PPI Mapping

Local and national PPI initiatives and projects in academic clinical research

The basis for this PPI mapping exercise is an online survey conducted by the SCTO and a multistakeholder working group consisting of representatives from patient organisations and academic clinical research. This project was carried out with the help and financial support of the Swiss Personalized Health Network (SPHN), which is one of our partner organisations.

Our PPI mapping exercise revealed that numerous patient and public involvement (PPI) activities exist in academic clinical research in Switzerland. Individual initiatives and projects, including the type of involvement, are summarised below on this page.

The over 50 PPI initiatives and projects in the field of academic clinical research included in the mapping exercise are initiatives and projects that are governed by the Human Research Act (HRA) and its ordinances and that are funded by non-profit organisations (usually foundations) or receive public funding (e.g. university hospitals). The mapping data do not include PPI initiatives and projects that have a general focus on the healthcare system but no direct connection to clinical research. The following types of research, among others, are included:

randomised controlled clinical trials
research on personalised health
observational research in epidemiology
research with data and samples from humans
research on research

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The overview below provides a summary of the following information for each of the PPI initiatives and projects identified:

the role and scope of PPI (provide information, provide advice, contribute, lead)
at which stage PPI is included (before, during, after, or throughout the entire research project)
the status of the PPI activity (permanent, ongoing, completed).

This overview is neither complete nor comprehensive. It reflects the situation at the time of the mapping exercise and is regularly updated.

Contact

Are you involved in planning, conducting, evaluating, summarising, and/or disseminating the results of a research project or initiative? Or are you aware of another such PPI initiative or project? We would be happy to hear from you:

Submit your PPI initiative or PPI project online.
Send an e-mail to ppi@scto.notexisting@nodomain.comch.

Overview of identified PPI initiatives and projects

Name

Organisation

Region
Advisory to COVID-19 Study Protocol

University Hospital Basel

Basel
international
Advisory to Steering Committee Oncoplastic Breast Consortium (OPBC)-2 PREPEC

University Hospital Basel

Basel
COVID-19 in People with Primary Ciliary Dyskinesia (COVID-PCD)

The Institute of Social and Preventive Medicine (ISPM)

Bern
international
Collaborations between patients, family members, and researchers. A co-designed mixed-methods evaluation of user engagement and partnership in health research

Institute for Implementation Science in Health Care (IfIS), University of Zurich

German-speaking Switzerland
Communicating the results of genomic research

Lausanne University Hospital (CHUV)

Lausanne
Creation of a questionnaire on the perception of informal coercion

Lausanne University Hospital (CHUV), Department of Psychiatry

Lausanne
Creation of a self-stigma questionnaire (Paradox of Self-Stigma scale PaSS-24)

Lausanne University Hospital (CHUV), Department of Psychiatry

Lausanne
DayOne Health Hack

Basel Area Business & Innovation

EUPATI CH

Basel
Definition of upper airways exacerbations in Primary Ciliary Dyskinesia

The Institute of Social and Preventive Medicine (ISPM)

Bern
international
Drawing up recommendations for communicating the results of genomic analyses to research participants

Lausanne University Hospital (CHUV)

Lausanne
ECOS: Convergence space on knowledge about personalized health - A collaborative and participative research project

SantéPerSo - Personalized Health & Society

University of Lausanne (UNIL)

Lausanne
FICUS Trial - Supporting families during critical illness: A nurse-led family support intervention in intensive care

University of Zurich

Zurich
national
Giving patient representatives a seat on cantonal ethics committees

Cantonal ethic committees

Lausanne
Bern
Basel
Geneva
Zurich
Bellinzona
St. Gallen
HEAR trial: Improving access to screening for hearing loss after childhood cancer – a novel community based approach

The Institute of Social and Preventive Medicine (ISPM)

Bern
ImmunAID (Immunome Project Consortium for Autoinflammatory Disorders)

FMF & AID Global Association

University of Geneva (UNIGE)

Horizon2020 - European Commission

Geneva
Zurich
international
Involvement of persons with heart failure and their relatives in research on innovative nursing aftercare for persons suffering from heart failure

HES-SO, Institute of Applied Health Research, School of Health Sciences Fribourg

Basel
Bern
Fribourg
Lausanne coproduction hub (Groupe lausannois de coproduction)

Unisanté - Center for Primary Care and Public Health

Lausanne
MED-fLAG

Lausanne University Hospital (CHUV)

Lausanne
Meaningful Patient and Public Involvement in HIV research: A mapping review

University Hospital Basel, Division of Clinical Epidemiology

Swiss HIV Cohort Study

Basel
MultiSCRIPT - Treatment Optimisation in Multiple Sclerosis

University Hospital Basel

Basel
Open research colloquium

Lausanne University Hospital (CHUV), Department of Psychiatry

Lausanne
PASTA-trial

Inselspital (Universitätsspital) Bern

Bern
PPI Framework

University of Basel, Department of Clinical Research, Clinical Trial Unit

Basel
PPI Speed Dating event

Zurich
PRESENT project

Unisanté - Center for Primary Care and Public Health

Lausanne
Partenariat en recherche clinique - Group for the development and implementation of the clinical research partnership at HUG

Geneva University Hospitals (HUG)

University of Geneva (UNIGE)

Geneva
Patient Advocacy

Zoé4life

Lausanne
international
Patient Engagement in Research

Rising Tide Foundation for Clinical Cancer Research

Schaffhausen
international
Patient Involvement in Dentistry

Clinic of Reconstructive Dentistry / Center of Dental Medicine / University of Zurich

Zurich
Patient Lab

IUFRS, FBM, UNIL, CHUV, Oncology Department CHUV

UNIGE, HUG, Oncology Department HUG

Geneva
Lausanne
Patient Preferences Regarding Treatment of Advanced Prostate Cancer Treatments

University of Zurich, Epidemiology, Biostatistics and Prevention Institute (EBPI)

Zurich
Patient and Public Involvement (PPI) as part of the Investigator Initiated Clinical Trials (IICT) programme's evaluation process

Swiss National Science Foundation (SNSF)

Bern
Patient and Public Involvement Campus Stiftung Lindenhof Bern

Campus SLB (Stiftung Lindenhof Bern)

Bern
Patient involvement in clinical research

EOC - Ente Ospedaliero Cantonale

IOSI - Instituto Oncologico della Svizzera Italiana

Bellinzona
Ticino
Pilot Study for peer-led self-management program for Swiss breast cancer survivors

Lausanne University Hospital (CHUV)

University of Lausanne (UNIL)

Lausanne
Proactive Involvement of Patients and Public in Clinical Research at the USZ

Clinical Trials Center (University Hospital Zurich)

Zurich
Program for meaningful Patient and Public Involvement in Clinical Research

Department of Clinical Research (DCR), University of Bern

Bern
Research priorities in Primary Ciliary Dyskinesia - patient's persperctive

The Institute of Social and Preventive Medicine (ISPM)

Bern
international
RheumaCura Foundation

RheumaCura Foundation

Bern
international
SAKK Patient Advisory Board

Swiss Group for Clinical Cancer Research (SAKK)

Bern
SALuBRITY PPI project

University of Zurich, Epidemiology, Biostatistics and Prevention Institute (EBPI)

University Spine Center Zurich (UWZH), Balgrist University Hospital

Institute for Implementation Science in Health Care (IfIS), University of Zurich

Zurich
SCTO PPI Working Group

Swiss Clinical Trial Organisation (SCTO)

national
Bern
SPHN & PHRT National Data Streams

Swiss Personalized Health Network (SPHN)

ETH Personalized Health and Related Technologies (PHRT)

Bern
national
Zurich
SPHN (Swiss Personalized Health Network) ELSI (Ethical, Legal and Social Issues) Advisory Group (ELSlag)

Swiss Personalized Health Network (SPHN)

national
Bern
SYNERGIES Projects

Meeting for Minds

Bern
Lausanne
Zurich
Set-up and roll-out of patient participation in SCQM research

Swiss Clinical Quality Management in Rheumatic Diseases (SCQM) Foundation

Zurich
national
Swiss Cerebral Palsy Registry (Swiss-CP-Reg)

The Institute of Social and Preventive Medicine (ISPM)

Bern
national
Swiss Pediatric Inflammatory Brain Disease Registry (Swiss-Ped-IBrainD)

The Institute of Social and Preventive Medicine (ISPM)

Bern
national
Swiss Rare Disease Registry

The Institute of Social and Preventive Medicine (ISPM)

Bern
national
Swiss Transplant Cohort Study (STCS) Patient Advisory Board

University Hospital Basel

Basel
Swissmedic’s working group with patient and consumer organisations

Swissmedic

Bern
The Swiss Childhood Cancer Survivor Study

University of Bern

Bern
national
Timing of Revascularization in Patients With Diabetic Foot Ulcer and Non-critical Peripheral Artery Disease (DIFU)

Inselspital (Universitätsspital) Bern

Bern
Together for research that moves us forward

University Hospital Basel

Basel
Training in research partnerships

Geneva University Hospitals (HUG)

Geneva
Treatment of lymphedema after breast cancer therapy

University Hospital Basel

Basel
No result found.

                    Advisory to COVID-19 Study Protocol
                
                    Official title of the study
                
                    Efficacy and safety of remdesivir in hospitalized patients with COVID-19: Systematic review and individual patient data meta-analysis of randomized trials
                
                    Type
                
                        Project
                    
                    Organisation
                
University Hospital Basel

                    Region
                
                                    Basel
                                
                                    international
                                
                    Role of PPI
                
Outcome

                    Before the actual beginning of the research project
                
Review the design of the clinical study protocol, with a focus on primary endpoints

                    Status of PPI activities
                
                        completed
                    
                        Contact
                    
Matthias Briel

matthias.notexisting@nodomain.combriel@usb.notexisting@nodomain.comch

                    Advisory to Steering Committee Oncoplastic Breast Consortium (OPBC)-2 PREPEC
                
                    Type
                
                        Project
                    
                    Organisation
                
University Hospital Basel

                    Region
                
                                    Basel
                                
                    Role of PPI
                
                    Respond to specific questions and provide general advice
                
Review of protocol and informed consent, including amendments

                    Before the actual beginning of the research project
                
                    Provide input on a clinical study's design (study protocol)
                
                    Give advice on the information to be provided to study participants
                
                    Throughout the entire research project
                
                    Support the communication of research results
                
                    Give advice as a member of an advisory board, committee or panel
                
                    Status of PPI activities
                
                        completed
                    
                        Contact
                    
Prof. Walter Weber

walter.notexisting@nodomain.comweber@usb.notexisting@nodomain.comch

                    COVID-19 in People with Primary Ciliary Dyskinesia (COVID-PCD)
                
                    Official title of the study
                
                    COVID-19 in People with Primary Ciliary Dyskinesia (COVID-PCD)
                
                    Type
                
                        Project
                    
                    Brief description
                
                    COVID-PCD is an online participatory study initiated by people with primary ciliary dyskinesia (PCD) who have an essential vote in all stages of the research from the design of the study to interpretation and communication of the study results. COVID-PCD aims to collect epidemiological data from people with PCD to describe incidence of COVID-19, symptoms, and course of disease and to answer research questions related to PCD such questions on lifestyle, healthcare and prognosis. COVID-PCD exists in five languages and includes more than 700 people with PCD from 48 countries. 
                
                    Organisation
                
The Institute of Social and Preventive Medicine (ISPM) 

                    Region
                
                                    Bern
                                
                                    international
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
                    Contribute at decision-making level
                
                    Before the actual beginning of the research project
                
                    Identify relevant research questions or unmet medical needs
                
                    Provide input on a clinical study's design (study protocol)
                
                    Give advice on the information to be provided to study participants
                
Advise on content of particpant-questionnaires
Translation of study material

                    During the course of the research project
                
                    Give advice on the information provided to study participants
                
                    Participate in internal meetings as a member
                
Recruitment of study participants
Provide ideas for research questions to cover in extra questionnaires

                    After the completion of the research project
                
                    Support the communication of research results to study participants and the general public
                
                    Support the publication of the research results
                
                    Throughout the entire research project
                
                    Support the research project's leaders
                
                    Support the communication of research results
                
                    Give advice as a member of an advisory board, committee or panel
                
                    Status of PPI activities
                
                        ongoing
                    
                    Website's URL
                
                    https://covid19pcd.ispm.ch/en/
                
                        Contact
                    
Eva Pedersen

eva.notexisting@nodomain.compedersen@ispm.notexisting@nodomain.comunibe.notexisting@nodomain.comch

Claudia Kuehni

claudia.notexisting@nodomain.comkuehni@ispm.notexisting@nodomain.comunibe.notexisting@nodomain.comch

                    Collaborations between patients, family members, and researchers. A co-designed mixed-methods evaluation of user engagement and partnership in health research
                
                    Type
                
                        Project
                    
                    Brief description
                
In Switzerland, involving patients, family members, and the public (users) in health research, which is also known as patient and public involvement (PPI), is becoming more common. However, evaluating how users and researchers collaborate within research studies itself has not yet received much attention. This project is part of the FICUS study (Family Support Intervention in Intensive Care Units), which is funded by the Swiss National Science Foundation, and investigates the ability of a family support program in intensive care units to increase quality of care, strengthen family coping with serious illness and trauma, and reduce negative impact on family members’ mental health.
The goal is to learn about the collaboration experience within the FICUS study. To achieve this, a mixed-methods evaluation will be co-designed and co-conducted to examine the impact and experience of the user-researcher collaboration from both their perspectives. In addition, the team aims to develop practical recommendations to aid user-researcher collaboration and PPI in future health research.
Funder of this project is the "Citizen Science Zurich Seed Grant 2023"

                    Organisation
                
Institute for Implementation Science in Health Care (IfIS), University of Zurich

                    Region
                
                                    German-speaking Switzerland
                                
                    Role of PPI
                
                    Respond to specific questions and provide general advice
                
                    Contribute at decision-making level
                
                    Take over or lead specific parts of an initiative or a project
                
Co-Design of the research project and the application.
Collaboration in data collection and data analysis as well as study report.

                    Before the actual beginning of the research project
                
                    Identify relevant research questions or unmet medical needs
                
Co-application.
Provide input on the study design.

                    During the course of the research project
                
Co-project management and collaboration in the project team incl. data collection and evaluation.

                    After the completion of the research project
                
Contribution to the evaluation of the study and the communication of the research results to the study participants and the general public.
Collaboration in the publication of the research results.
Development of recommendations for the collaboration between patients, family members, and researchers.

                    Throughout the entire research project
                
Co-project management.
Project member.
Collaboration in the communication of research results.

                    Status of PPI activities
                
                        ongoing
                    
                    Website's URL
                
                    https://www.citizenscience.uzh.ch/en/projects/ficus.html
                
                        Contact
                    
Rahel Naef, Judith Safford

rahel.notexisting@nodomain.comnaef@uzh.notexisting@nodomain.comch
https://www.ifis.uzh.ch/en/News/Seed-Grants-Citizen-Science-2023--two-of-the-six-funded-projects-were-applied-by-IfIS.html

                    Communicating the results of genomic research
                
                    Type
                
                        Project
                    
                    Brief description
                
                    Understanding the «personal value» of communicating the results: the perspective of the research participant
                
                    Organisation
                
Lausanne University Hospital (CHUV)

                    Region
                
                                    Lausanne
                                
                    Role of PPI
                
                    Provide information
                
                    Before the actual beginning of the research project
                
                    Provide input on a clinical study's design (study protocol)
                
A co-researcher patient, a member of the «Citizen college of co-researchers in healthcare» (Collège citoyen de cochercheur·e·s en matière de santé)

                    During the course of the research project
                
Qualitative interviews with patients

                    After the completion of the research project
                
The results of the study will be presented to the patients taking part in the project

                    Status of PPI activities
                
                        completed
                    
                    Website's URL
                
                    https://www.chuv.ch/fr/ihm/ihm-home/recherche/toutes-les-recherches/a-c/gaia-barazzetti
                
                        Contact
                    
Gaia Barazzetti

                    Creation of a questionnaire on the perception of informal coercion
                
                    Type
                
                        Project
                    
                    Brief description
                
                    This research aims to assess the "informal" coercion that can be experienced in connection with psychiatric care. Informal coercion is the term used to describe all the inducements, persuasions, pressures, and even threats, presented to individuals in order to encourage them to accept therapeutic measures. The aim is to validate a psychometric tool in a paper and pencil format, as well as an adapted computer-based version. The items for this tool have been developed in collaboration with psychiatric patients. A test phase is currently in progress. 
                
                    Organisation
                
Lausanne University Hospital (CHUV), Department of Psychiatry

                    Region
                
                                    Lausanne
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
Discussion and drafting of the questionnaire items, discussion of the hypothesis and feasibility

                    Before the actual beginning of the research project
                
                    Identify relevant research questions or unmet medical needs
                
                    Support funders with the evaluation of concepts for patient and public involvement in specific projects
                
                    Provide input on a clinical study's design (study protocol)
                
                    Give advice on the information to be provided to study participants
                
                    During the course of the research project
                
                    Participate in internal meetings as a member
                
                    After the completion of the research project
                
                    Provide input on the evaluation of the study
                
                    Support the communication of research results to study participants and the general public
                
                    Support the publication of the research results
                
                    Throughout the entire research project
                
                    Give advice as a member of an advisory board, committee or panel
                
                    Status of PPI activities
                
                        completed
                    
                        Contact
                    
Philippe Golay

philippe.notexisting@nodomain.comgolay@chuv.notexisting@nodomain.comch

                    Creation of a self-stigma questionnaire (Paradox of Self-Stigma scale PaSS-24)
                
                    Type
                
                        Project
                    
                    Brief description
                
                    Exposure to public stigma can lead to the endorsement of negative stereotypes and associated self-stigma. This phenomenon has well-documented deleterious consequences for people living with mental illness. Paradoxically, it can also lead to reactions of righteous anger and pride. The "Paradox of Self-Stigma scale" is a self-assessment tool that can be used to measure self-stigma in psychiatric patients. It consists of 24 items divided into three subscores: Stereotype endorsement, righteous anger, non-disclosure.
This tool has been developed by the Community Psychiatry Service in collaboration with psychiatric patients.
                
                    Organisation
                
Lausanne University Hospital (CHUV), Department of Psychiatry

                    Region
                
                                    Lausanne
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
Discussion and drafting of the questionnaire items
Discussion of the hypothesis and feasibility

                    Before the actual beginning of the research project
                
                    Identify relevant research questions or unmet medical needs
                
                    Support funders with the evaluation of concepts for patient and public involvement in specific projects
                
                    Provide input on a clinical study's design (study protocol)
                
                    Give advice on the information to be provided to study participants
                
                    During the course of the research project
                
                    Participate in internal meetings as a member
                
                    After the completion of the research project
                
                    Provide input on the evaluation of the study
                
                    Support the communication of research results to study participants and the general public
                
                    Support the publication of the research results
                
                    Throughout the entire research project
                
                    Give advice as a member of an advisory board, committee or panel
                
                    Status of PPI activities
                
                        completed
                    
                        Contact
                    
Philippe Golay

philippe.notexisting@nodomain.comgolay@chuv.notexisting@nodomain.comch

                    DayOne Health Hack
                
                    Type
                
                        Project
                    
                    Brief description
                
The DayOne Health Hack is designed as a patient-centric innovation journey. It is te first of its kind in Switzerland, reaching out to patients who want to assume an active role in finding new, digital-driven-solutions. During the hackathon, mentors and coaches will be present to help the teams

                    Organisation
                
Basel Area Business & Innovation
EUPATI CH

                    Region
                
                                    Basel
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
                    Contribute at decision-making level
                
                    Take over or lead specific parts of an initiative or a project
                
co-organiser and member of Steering Board

                    Before the actual beginning of the research project
                
                    Identify relevant research questions or unmet medical needs
                
                    Provide input on a clinical study's design (study protocol)
                
                    During the course of the research project
                
                    Participate in internal meetings as a member
                
                    After the completion of the research project
                
                    Support the communication of research results to study participants and the general public
                
                    Support the publication of the research results
                
                    Throughout the entire research project
                
                    Support the communication of research results
                
                    Give advice as a member of an advisory board, committee or panel
                
                    Status of PPI activities
                
                        ongoing
                    
                    Website's URL
                
                    https://www.dayone.swiss/community/dayone-events/health-hack/
                
                        Contact
                    
Frank Kumli

frank.notexisting@nodomain.comkumli@baselarea.notexisting@nodomain.comswiss

                    Definition of upper airways exacerbations in Primary Ciliary Dyskinesia
                
                    Official title of the study
                
                    Upper respiratory exacerbations in patients with Primary Ciliary Dyskinesia (PCD): an expert consensus definition (multi-national project)
                
                    Type
                
                        Project
                    
                    Brief description
                
Selection of appropriate outcome measures for clinical studies and particularly trials is an important factor for successful research. Exacerbations from the nose, sinuses and ears have an important effect in the daily life of people with PCD and have been identified as a potential outcome measure for trials in this field. However, there is still no standardised definition. This project aims to develop a consensus definition for upper airways exacerbation in people with PCD from an experts panel in collaboration with PCD patients and parents of children with PCD.

                    Organisation
                
The Institute of Social and Preventive Medicine (ISPM) 

                    Region
                
                                    Bern
                                
                                    international
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
                    Contribute at decision-making level
                
                    Before the actual beginning of the research project
                
                    Identify relevant research questions or unmet medical needs
                
                    During the course of the research project
                
                    Participate in internal meetings as a member
                
This is an expert consensus group study and the involved patients are members of the expert group e.g. participate in the e-Delphi surveys

                    After the completion of the research project
                
                    Support the communication of research results to study participants and the general public
                
                    Support the publication of the research results
                
                    Throughout the entire research project
                
                    Support the research project's leaders
                
                    Support the communication of research results
                
                    Give advice as a member of an advisory board, committee or panel
                
                    Status of PPI activities
                
                        completed
                    
                        Contact
                    
Myrofora Goutaki

myrofora.notexisting@nodomain.comgoutaki@ispm.notexisting@nodomain.comunibe.notexisting@nodomain.comch

                    Drawing up recommendations for communicating the results of genomic analyses to research participants
                
                    Type
                
                        Project
                    
                    Organisation
                
Lausanne University Hospital (CHUV)

                    Region
                
                                    Lausanne
                                
                    Role of PPI
                
                    Provide information
                
                    After the completion of the research project
                
To enable participants to give their opinion on various key points of the recommendations on communicating the results of genetic analysis conducted in connection with research projects.

                    Status of PPI activities
                
                        completed
                    
                        Contact
                    
Jacques Fellay

                    ECOS: Convergence space on knowledge about personalized health - A collaborative and participative research project
                
                    Type
                
                        Project
                    
                    Brief description
                
The project addresses the visions of personalized health of three groups of stakeholders: researchers whose work opens up new prospects, primary care physicians who have to deal with the repercussions of this research on their daily practice, and members of the public as future «users»

                    Organisation
                
SantéPerSo - Personalized Health & Society
University of Lausanne (UNIL)

                    Region
                
                                    Lausanne
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
                    Contribute at decision-making level
                
                    Take over or lead specific parts of an initiative or a project
                
Participation in an immersive laboratory workshop conducted in collaboration with L'éprouvette (public laboratory of the University of Lausanne)
The objective of the workshop is to enable members of the public participating in the project familiarize themselves with the basic concepts of genomics and discuss the ethical and social issies raised by research on genomics and personalized health.

                    Before the actual beginning of the research project
                
                    Identify relevant research questions or unmet medical needs
                
                    During the course of the research project
                
                    Participate in internal meetings as a member
                
                    After the completion of the research project
                
                    Provide input on the evaluation of the study
                
                    Support the communication of research results to study participants and the general public
                
                    Support the publication of the research results
                
                    Throughout the entire research project
                
                    Support the communication of research results
                
                    Give advice as a member of an advisory board, committee or panel
                
                    Status of PPI activities
                
                        completed
                    
                    Website's URL
                
                    https://www.santeperso.ch/ 
                
                        Contact
                    
Gaia Barazzetti, Alain Kaufmann

alain.notexisting@nodomain.comkaufmann@unil.notexisting@nodomain.comch

                    FICUS Trial - Supporting families during critical illness: A nurse-led family support intervention in intensive care
                
                    Official title of the study
                
                    FICUS Trial: A multi-centre, cluster-randomized superiority trial of a guideline-based Family Support Intervention in Intensive Care Units 
                
                    Type
                
                        Project
                    
                    Brief description
                
Family members are important to the well-being and recovery of critically ill people yet are themselves profoundly affected by the critical illness. During a close other’s treatment in an intensive care unit (ICU), families experience high levels of stress and uncertainty, particularly in the event of surrogate decision-making and loss. About one third experience adverse mental health. The FICUS trial tests the effect of a nurse-led, interprofessional family support intervention in ICU on the quality of family care, family management, and individual mental health compared to usual care provided to family members

                    Organisation
                
University of Zurich

                    Region
                
                                    Zurich
                                
                                    national
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
                    Contribute at decision-making level
                
                    Take over or lead specific parts of an initiative or a project
                
                    Before the actual beginning of the research project
                
                    Identify relevant research questions or unmet medical needs
                
                    Provide input on a clinical study's design (study protocol)
                
                    Give advice on the information to be provided to study participants
                
Coordinate between patient/public and researchers

                    During the course of the research project
                
                    Give advice on the information provided to study participants
                
                    Participate in internal meetings as a member
                
Advise on recruitment strategy
Support communication to the public

                    After the completion of the research project
                
                    Provide input on the evaluation of the study
                
                    Support the communication of research results to study participants and the general public
                
                    Support the publication of the research results
                
                    Throughout the entire research project
                
                    Support the research project's leaders
                
                    Support the communication of research results
                
                    Give advice as a member of an advisory board, committee or panel
                
                    Status of PPI activities
                
                        ongoing
                    
                    Website's URL
                
                    https://www.ifis.uzh.ch/en/Lehre-Forschung/Forschung/Projekt-FICUS-Trial.html
                
                        Contact
                    
Project lead:

Prof. Dr. Rahel Naef

Institut für Implementation Science in Health Care, Medizinische Fakultät der Universität Zürich & Centre of Clinical Nursing Science, Universitätsspital Zürich

Universitätstrasse 84

8006 Zurich

rahel.notexisting@nodomain.comnaef@uzh.notexisting@nodomain.comch

+41 44 634 37 49
PPI facilitator:

Dr. Judith Safford

judith@saffordconsulting.notexisting@nodomain.comch

                    Giving patient representatives a seat on cantonal ethics committees
                
                    Type
                
                        Initiative
                    
                    Brief description
                
                    This initiative incorporates the patient’s perspective into the review and approval processes for research projects involving humans (see the cantonal ethics committees’ main tasks)
                
                    Organisation
                
Cantonal ethic committees

                    Region
                
                                    Lausanne
                                
                                    Bern
                                
                                    Basel
                                
                                    Geneva
                                
                                    Zurich
                                
                                    Bellinzona
                                
                                    St. Gallen
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
                    Status of PPI activities
                
                        permanent
                    
                    Website's URL
                
                    https://swissethics.ch/en/ethikkommissionen

                    HEAR trial: Improving access to screening for hearing loss after childhood cancer – a novel community based approach
                
                    Type
                
                        Project
                    
                    Brief description
                
In this trial, young adults are offered a free hearing test near where they live. The hearing tests are carried out at local business that provides hearing aids. Trial participants are given a printed result of their test, which can be discussed with their physician if necessary. Participants are also asked if a copy of their test results can be used for research in childhood cancer. An advisory group consisting of former childhood cancer patients, physicians, and hearing experts is actively involved in this project.

                    Organisation
                
The Institute of Social and Preventive Medicine (ISPM) 

                    Region
                
                                    Bern
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
                    Contribute at decision-making level
                
                    Before the actual beginning of the research project
                
                    Identify relevant research questions or unmet medical needs
                
                    Support funders with the evaluation of concepts for patient and public involvement in specific projects
                
                    Provide input on a clinical study's design (study protocol)
                
                    Give advice on the information to be provided to study participants
                
                    During the course of the research project
                
                    Give advice on the information provided to study participants
                
                    Participate in internal meetings as a member
                
                    After the completion of the research project
                
                    Provide input on the evaluation of the study
                
                    Support the communication of research results to study participants and the general public
                
                    Support the publication of the research results
                
                    Throughout the entire research project
                
                    Support the research project's leaders
                
                    Support the communication of research results
                
                    Give advice as a member of an advisory board, committee or panel
                
                    Status of PPI activities
                
                        completed
                    
                        Contact
                    
Claudia Kuehni

claudia.notexisting@nodomain.comkuehni@ispm.notexisting@nodomain.comunibe.notexisting@nodomain.comch

                    ImmunAID (Immunome Project Consortium for Autoinflammatory Disorders)
                
                    Type
                
                        Project
                    
                    Brief description
                
ImmunAID is a large 5-year duration research project that aims to optimize the diagnostic, classification, and clinical management of patients with autoinflammatory disorders.

                    Organisation
                
FMF & AID Global Association
University of Geneva (UNIGE)
Horizon2020 - European Commission

                    Region
                
                                    Geneva
                                
                                    Zurich
                                
                                    international
                                
                    Role of PPI
                
                    Provide information
                
                    Contribute at decision-making level
                
Dissemination of information to the patient community

                    Before the actual beginning of the research project
                
                    Give advice on the information to be provided to study participants
                
                    During the course of the research project
                
Keep patients informed of the project's achievements, trying to get them involved in the study

                    After the completion of the research project
                
                    Support the communication of research results to study participants and the general public
                
                    Throughout the entire research project
                
                    Support the communication of research results
                
help recruit suitable patients

                    Status of PPI activities
                
                        completed
                    
                    Website's URL
                
                    www.immunaid.eu
                
                        Contact
                    
Malena Vetterli - PAO partner

info@fmfandaid.notexisting@nodomain.comorg

                    Involvement of persons with heart failure and their relatives in research on innovative nursing aftercare for persons suffering from heart failure
                
                    Type
                
                        Project
                    
                    Brief description
                
Involvement of persons with heart failure and their relatives in the preparation of an application to be submitted to the SNSF.
Ongoing involvement if the application is funded. French- and German-speaking persons with heart failure and their relatives from the cantons of Fribourg, Basel, Bern.

                    Organisation
                
HES-SO, Institute of Applied Health Research, School of Health Sciences Fribourg

                    Region
                
                                    Basel
                                
                                    Bern
                                
                                    Fribourg
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
                    Before the actual beginning of the research project
                
                    Identify relevant research questions or unmet medical needs
                
                    Provide input on a clinical study's design (study protocol)
                
                    Give advice on the information to be provided to study participants
                
                    Throughout the entire research project
                
                    Support the communication of research results
                
The involvement in the preparation of the application has been completed. If the application is funded, the involvement will continue.

                    Status of PPI activities
                
                        completed
                    
                        Contact
                    
Petra Schäfer-Keller

petra.notexisting@nodomain.comschaefer-keller@hefr.notexisting@nodomain.comch

                    Lausanne coproduction hub (Groupe lausannois de coproduction)
                
                    Type
                
                        Initiative
                    
                    Brief description
                
The mission of the Lausanne coproduction hub is to strengthen research and implementation of patient centeredness and coproduction of healthcare services in primary care. It is part of the International Coproduction in Health Network (ICoHN). The Hub is run out of Unisanté, the Center for Primary Care and Public Health in Lausanne.
The Hub’s objectives are:
To promote Unisanté’s role as an academic hub for creating knowledge and building capacity in coproduction in healthcare.
To enhance multi-stakeholder collaborations in coproduction-focused research and implementation activities spanning multiple clinical areas and target populations.

                    Organisation
                
Unisanté - Center for Primary Care and Public Health

                    Region
                
                                    Lausanne
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
                    Contribute at decision-making level
                
                    Throughout the entire research project
                
                    Support the research project's leaders
                
Establish the group’s aims, identity and activities. 
Give advice to group members doing research or launching initiatives

                    Status of PPI activities
                
                        completed
                    
                        Contact
                    
Marie-Anne Durand, Kevin Selby, Christian von Plessen

marie-anne.notexisting@nodomain.comdurand@unisante.notexisting@nodomain.comch

                    MED-fLAG
                
                    Official title of the study
                
                    MEDfLAG - MEDication Literacy Assessment in Geriatric patients 
                
                    Type
                
                        Project
                    
                    Brief description
                
Older people are faced with increasingly complex drug prescriptions, and the inappropriate use of medicines is common. Access to a standardised scale for assessing the skills in the self-management of medicines, i.e. medication literacy, is an essential step in enabling clinicians to propose customised actions. This project has initiated the development of a standardised scale for assessing medication literacy specifically in the elderly – the MEDication Literacy Assessment in Geriatric patients (MED-fLAG).

                    Organisation
                
Lausanne University Hospital (CHUV)

                    Region
                
                                    Lausanne
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
Sharing experience on questions specifically related to medication (key informant) Designing a new instrument in the form of a patient-reported outcome measure
Recruitment tool 
Tool for interpreting the data (qualitative research)
Help disseminate the results as co-author

                    Before the actual beginning of the research project
                
                    Give advice on the information to be provided to study participants
                
                    During the course of the research project
                
                    Give advice on the information provided to study participants
                
Leading a working sub-group on a specific subject: discussion of the relevance, comprehensibility and comprehensiveness of the MED-fLAG items, response modalities, instructions
Participation in conducting interviews
Participation in data analysis/interpretation (qualitative research)
Advice for reviewing MED-fLAG

                    After the completion of the research project
                
                    Support the communication of research results to study participants and the general public
                
                    Support the publication of the research results
                
Proofreading

                    Throughout the entire research project
                
                    Give advice as a member of an advisory board, committee or panel
                
Designing a new instrument in the form of a patient-reported outcome measure Supporting the research approaches
Enhance the credibility of the interpretations and the scientific approach

                    Status of PPI activities
                
                        completed
                    
                        Contact
                    
Jenny Gentizon

jenny.notexisting@nodomain.comgentizon@chuv.notexisting@nodomain.comch

                    Meaningful Patient and Public Involvement in HIV research: A mapping review
                
                    Official title of the study
                
                    Meaningful Patient and Public Involvement in HIV research: A mapping review
                
                    Type
                
                        Project
                    
                    Brief description
                
To systematically search and summarize already existing empirical evidence on PPI guidance and case examples in HIV research, their level of involvement and reported impact.
Additional information/comment: Study protocol of the mapping review: https://osf.io/md37a.
This mapping review is the first part of a larger PPI research project to establish meaningful PPI in HIV research specifically for the Swiss HIV Cohort Study (led by Dr Julia Notter, Kantonsspital St. Gallen).

                    Organisation
                
University Hospital Basel, Division of Clinical Epidemiology
Swiss HIV Cohort Study 

                    Region
                
                                    Basel
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
                    Contribute at decision-making level
                
                    Take over or lead specific parts of an initiative or a project
                
                    Before the actual beginning of the research project
                
                    Identify relevant research questions or unmet medical needs
                
                    Support funders with the evaluation of concepts for patient and public involvement in specific projects
                
                    Provide input on a clinical study's design (study protocol)
                
                    During the course of the research project
                
                    Participate in internal meetings as a member
                
                    After the completion of the research project
                
                    Provide input on the evaluation of the study
                
                    Support the communication of research results to study participants and the general public
                
                    Support the publication of the research results
                
including co-authorship and reporting according to GRIPP2 checklist

                    Throughout the entire research project
                
                    Support the research project's leaders
                
                    Support the communication of research results
                
                    Give advice as a member of an advisory board, committee or panel
                
                    Status of PPI activities
                
                        ongoing
                    
                    Website's URL
                
                    https://osf.io/md37a
                
                        Contact
                    
Alain Amstutz

a.notexisting@nodomain.comamstutz@usb.notexisting@nodomain.comch

                    MultiSCRIPT - Treatment Optimisation in Multiple Sclerosis 
                
                    Official title of the study
                
                    MultiSCRIPT trial – Personalised medicine MULTIple SCLerosis a pRagmatic Platform Trial embedded within the Swiss Multiple Sclerosis Cohort (SMSC)
                
                    Type
                
                        Project
                    
                    Brief description
                
Pragmatic multicentre 1:1 randomised-controlled parallel group, superiority, platform study embedded in the Swiss Multiple Sclerosis Cohort (SMSC).
The MultiSCRIPT study investigates how intensive monitoring of biomarkers improves patient-relevant outcomes as well as the care of MS patients.

                    Organisation
                
University Hospital Basel

                    Region
                
                                    Basel
                                
                    Role of PPI
                
Review of the proposal and patient-facing material, part of the delphi process of the study, support of patients/patient organisations in the communication of study results.

                    Before the actual beginning of the research project
                
Review of the proposal and patient-facing material

                    During the course of the research project
                
                    Participate in internal meetings as a member
                
                    After the completion of the research project
                
                    Support the communication of research results to study participants and the general public
                
                    Throughout the entire research project
                
Support of patients/patient organisations in the communication of study results.

                    Status of PPI activities
                
                        ongoing
                    
                    Website's URL
                
                    https://dkf.unibas.ch/en/competencies/iict/multiscript/ 
                
                        Contact
                    
PD Dr Özgür Yaldizli
oezguer.notexisting@nodomain.comyaldizli@usb.notexisting@nodomain.comch

                    Open research colloquium
                
                    Type
                
                        Project
                    
                    Brief description
                
                    Research colloquium with the participation of the indviduals concerned, peer practitioners and representatives of patient associations
                
                    Organisation
                
Lausanne University Hospital (CHUV), Department of Psychiatry

                    Region
                
                                    Lausanne
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
Discussion and drafting of the questionnaire items
Discussion of the hypothesis and feasibility

                    Before the actual beginning of the research project
                
                    Identify relevant research questions or unmet medical needs
                
                    Support funders with the evaluation of concepts for patient and public involvement in specific projects
                
                    Provide input on a clinical study's design (study protocol)
                
                    Give advice on the information to be provided to study participants
                
                    During the course of the research project
                
                    Participate in internal meetings as a member
                
                    After the completion of the research project
                
                    Provide input on the evaluation of the study
                
                    Support the communication of research results to study participants and the general public
                
                    Support the publication of the research results
                
                    Throughout the entire research project
                
                    Give advice as a member of an advisory board, committee or panel
                
                    Status of PPI activities
                
                        completed
                    
                        Contact
                    
Philippe Golay

philippe.notexisting@nodomain.comgolay@chuv.notexisting@nodomain.comch

                    PASTA-trial
                
                    Official title of the study
                
                    High Dose Steroids in Children With Stroke and Unilateral Focal Arteriopathy: A Multicentre Randomized Controlled Trial PASTA (Paediatric Arteriopathy Steroid Aspirin) Trial
                
                    Type
                
                        Project
                    
                    Organisation
                
Inselspital (Universitätsspital) Bern

                    Region
                
                                    Bern
                                
                    Role of PPI
                
                    Respond to specific questions and provide general advice
                
                    Contribute at decision-making level
                
                    Before the actual beginning of the research project
                
                    Identify relevant research questions or unmet medical needs
                
                    Provide input on a clinical study's design (study protocol)
                
                    Give advice on the information to be provided to study participants
                
Survey and consultancy for document and procedure development, in particular with regard to informed consent

                    After the completion of the research project
                
Plan to engage participants in strategy and decision making for future projects (loop idea, using input from former study participants when moving forward)

                    Status of PPI activities
                
                        ongoing

                    PPI Framework
                
                    Type
                
                        Initiative
                    
                    Brief description
                
Advice and support for researchers in the active implementation of appropriate measures

                    Organisation
                
University of Basel, Department of Clinical Research, Clinical Trial Unit

                    Region
                
                                    Basel
                                
                    Role of PPI
                
Support of PPI for academic clinical research

                    Status of PPI activities
                
                        permanent
                    
                    Website's URL
                
                    https://dkf.unibas.ch/en/competencies/patient-and-public-involvement/patient-and-public-involvement-why-and-how/
                
                        Contact
                    
Sandra Kohlmaier

sandra.notexisting@nodomain.comkohlmaier@usb.notexisting@nodomain.comch

                    PPI Speed Dating event
                
                    Brief description
                
This PPI Speed Dating event, which will take place on 17 June 2024 at the Clinical Trial Center Zürich, University Hospital Zürich.
The Speed Dating event is an opportunity for patients and researchers to meet, ask questions, exchange ideas and be inspired. Researchers have the opportunity to present research ideas and get feedback (e.g. on relevance or feasibility) from (affected) patients.
As researchers from the following research areas will also be attending the event, the organisers are specifically looking for interested patients with a corresponding/similar condition.
Neurology: Stroke / Epilepsy
Psychiatry and psychotherapy: Depression and psychosis
Infectiology: Hospital-acquired infections
Chronic kidney disease
Of course, interested patients with any disease and their relatives are also welcome.
When: Monday, 17 June 2024

Where: Clinical Trials Center Zürich (USZ); Moussonstrasse 2, 8044 Zürich

Remuneration: CHF 60.00 and travelling expenses
The Speed Dating event will be held in German.
 
                    Region
                
                                    Zurich
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
                    Status of PPI activities
                
                        ongoing
                    
                        Contact
                    
Silke Ludwig

silke.notexisting@nodomain.comludwig@usz.notexisting@nodomain.comch
Annina Bauer

annina.notexisting@nodomain.combauer@usz.notexisting@nodomain.comch

                    PRESENT project
                
                    Official title of the study
                
                    Colorectal cancer screening decisions based on predicted risk: the PREcision ScreENing randomized controlled Trial (PRESENT)
                
                    Type
                
                        Project
                    
                    Brief description
                
The PREcision ScreENing randomized controlled Trial, or PRESENT, will see if providing participants in colorectal cancer screening with their own risk score can improve the use of screening tests like colonoscopy and fecal immunochemical tests (FIT, which looks for blood in your stool invisible to the naked eye).

                    Organisation
                
Unisanté - Center for Primary Care and Public Health

                    Region
                
                                    Lausanne
                                
                    Role of PPI
                
                    Respond to specific questions and provide general advice
                
We have a citizen advisory committee with 6 members that is accompanying the project. It meets monthly to give feedback on materials and advice on study procedures.

                    Before the actual beginning of the research project
                
                    Provide input on a clinical study's design (study protocol)
                
                    Give advice on the information to be provided to study participants
                
Test study materials and case report forms

                    During the course of the research project
                
                    Give advice on the information provided to study participants
                
                    Participate in internal meetings as a member
                
Give advice on the interpretation of study data (quantitative and qualitative)

                    After the completion of the research project
                
                    Provide input on the evaluation of the study
                
                    Support the communication of research results to study participants and the general public
                
                    Support the publication of the research results
                
                    Throughout the entire research project
                
                    Support the research project's leaders
                
                    Support the communication of research results
                
                    Give advice as a member of an advisory board, committee or panel
                
                    Status of PPI activities
                
                        ongoing
                    
                        Contact
                    
Dr Kevin Selby

                    Partenariat en recherche clinique - Group for the development and implementation of the clinical research partnership at HUG
                
                    Official title of the study
                
                    Partenariat en recherche clinique - PartnerREC

                    Type
                
                        Initiative
                    
                    Brief description
                
This group, which is comprised of patients, doctors, nurses, specialists in partnerships, law and research, has met every month since 2019. Its objectives are to develop the thinking about the strategies for promoting the partnership between researchers, patients and the public in the HUG research projects, to advise research groups on these issues and bring patients and researchers together. One training focus involves the research partnership in progress. A web page describing the various types of partnership can be used for contact purposes.

                    Organisation
                
Geneva University Hospitals (HUG)
University of Geneva (UNIGE)

                    Region
                
                                    Geneva
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
Advice to researchers, putting patients and researchers in contact with each other 

                    Before the actual beginning of the research project
                
                    Identify relevant research questions or unmet medical needs
                
                    Provide input on a clinical study's design (study protocol)
                
                    Give advice on the information to be provided to study participants
                
On request: consultations with research teams to reflect together on the possibilities of partnerships in research, which includes the identification of a relevant research issue, an acceptable study design, comprehensible information, etc… 

                    During the course of the research project
                
                    Give advice on the information provided to study participants
                
                    Participate in internal meetings as a member
                
Management (follow-up) of the patients-researchers collaboration in the research team
Support for the patients involved in a research team

                    After the completion of the research project
                
                    Provide input on the evaluation of the study
                
                    Support the communication of research results to study participants and the general public
                
                    Support the publication of the research results
                
Evaluation of the participation of the patients in the project

                    Throughout the entire research project
                
Management (follow-up) of the patients-researchers collaboration in the research team
Support for the patients involved in a research team

                    Status of PPI activities
                
                        permanent
                    
                    Website's URL
                
                    https://recherche.hug.ch/reseau-partenariat-en-recherche-clinique
                
                        Contact
                    
Nadia Elia

nadia.notexisting@nodomain.comelia@hcuge.notexisting@nodomain.comch
Tourane Corbière

tourane.corbière@gmail.notexisting@nodomain.comcom

                    Patient Advocacy
                
                    Type
                
                        Initiative
                    
                    Brief description
                
Zoé4life is involved on a national and international level in patient advocacy for childhood cancer research

                    Organisation
                
Zoé4life

                    Region
                
                                    Lausanne
                                
                                    international
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
                    Contribute at decision-making level
                
                    Take over or lead specific parts of an initiative or a project
                
Participate in a leadership role in international multi-stakeholder consortiums which seek to address overarching issues in paediatric cancer drug development as well as develop clinical trials for childhood cancer (ACCELERATE, ITCC, SIOPEN).
Represent paediatric cancer patients, parents and survivors on a European and International level as board member of Childhood Cancer International, speaking in EU Parliamentary Meetings as well as large medical Paediatric Oncology Conferences (SIOP and SIOPE scientific committee member).
Provide patient advocate view including identifying relevant research questions and unmet medical need.
Present patient advocate view in multistakeholder paediatric strategy forums where specific drug classes or disease types are discussed, and strategic planning of drug development is addressed.
Participate on Trial Steering Committees in:
    - Preparing relevant information
    - Consulted on specific questions and provide advice
    - Involved when decisions are made
    - Lead a working group on International Collaboration in Paediatric Cancer Drug Development (ACCELERATE working group)

                    Before the actual beginning of the research project
                
                    Identify relevant research questions or unmet medical needs
                
                    Support funders with the evaluation of concepts for patient and public involvement in specific projects
                
                    Provide input on a clinical study's design (study protocol)
                
                    Give advice on the information to be provided to study participants
                
                    During the course of the research project
                
                    Give advice on the information provided to study participants
                
                    Participate in internal meetings as a member
                
                    After the completion of the research project
                
                    Provide input on the evaluation of the study
                
                    Support the communication of research results to study participants and the general public
                
                    Support the publication of the research results
                
Participate as co-author in manuscript writing

                    Throughout the entire research project
                
                    Support the research project's leaders
                
                    Support the communication of research results
                
                    Give advice as a member of an advisory board, committee or panel
                
                    Status of PPI activities
                
                        ongoing
                    
                    Website's URL
                
                    https://zoe4life.org/en/
                
                        Contact
                    
Nicole Scobie

nicole@zoe4life.notexisting@nodomain.comorg

                    Patient Engagement in Research
                
                    Type
                
                        Initiative
                    
                    Brief description
                
                    The decision to focus on patient engagement stems from an expressed focus area established by the Rising Tide Foundation for Clinical Cancer Research (RTFCCR) board of directors. In conducting this work, RTFCCR partnered with Patvocates, a patient advocacy and engagement network, to create a set of guiding documents and resources aimed at public and private health research funders within various national, international, and therapeutic settings. This effort included a landscape assessment, interviews with experts, and an iterative development process.
                
                    Organisation
                
Rising Tide Foundation for Clinical Cancer Research

                    Region
                
                                    Schaffhausen
                                
                                    international
                                
                    Role of PPI
                
                    Contribute at decision-making level
                
                    Take over or lead specific parts of an initiative or a project
                
                    Before the actual beginning of the research project
                
                    Identify relevant research questions or unmet medical needs
                
                    Support funders with the evaluation of concepts for patient and public involvement in specific projects
                
                    Provide input on a clinical study's design (study protocol)
                
                    Give advice on the information to be provided to study participants
                
                    During the course of the research project
                
                    Participate in internal meetings as a member
                
                    After the completion of the research project
                
                    Support the communication of research results to study participants and the general public
                
                    Throughout the entire research project
                
                    Support the research project's leaders
                
                    Status of PPI activities
                
                        permanent
                    
                    Website's URL
                
                    https://www.risingtide-foundation.org/clinical-cancer-research/patient-engagement#start
                
                        Contact
                    
Alexandre Alencar

alexandre.notexisting@nodomain.comalencar@risingtide.notexisting@nodomain.comch

                    Patient Involvement in Dentistry
                
                    Official title of the study
                
                    PPI in Reconstructive Dentistry (Oral Rehabilitation)
                
                    Type
                
                        Initiative
                    
                    Brief description
                
The paradigm shift in decision-making has enabled patients and clinicians to collaborate and arrive at a mutually agreeable course of action (shared-decision making). By involving patients in dentistry, we aim to define what really matters to patients, thereby assisting clinicians and patients in the decision making in day-to-day clinical practice.  
Consultation and support to researchers for integrating PPI into our research projects with a focus on reconstructive dentistry (Dental Implants, Crowns, Bridges, Dentures)
Establishment of a PPI Panel consisting of members of the public who can be consulted for research projects
Education in PPI for clinicians, researchers, members of the public, grant panels and committees

                    Organisation
                
Clinic of Reconstructive Dentistry / Center of Dental Medicine / University of Zurich

                    Region
                
                                    Zurich
                                
                    Role of PPI
                
Gather and provide information relevant to the public.
Address specific patient questions and provide general advice from patients' perspective.

                    Before the actual beginning of the research project
                
                    Identify relevant research questions or unmet medical needs
                
                    Provide input on a clinical study's design (study protocol)
                
                    Give advice on the information to be provided to study participants
                
                    During the course of the research project
                
                    Participate in internal meetings as a member
                
                    After the completion of the research project
                
                    Provide input on the evaluation of the study
                
                    Support the communication of research results to study participants and the general public
                
Having patients/members of the public support the dissemination and publication of study results

                    Throughout the entire research project
                
                    Support the research project's leaders
                
                    Support the communication of research results
                
                    Give advice as a member of an advisory board, committee or panel
                
                    Status of PPI activities
                
                        ongoing
                    
                    Website's URL
                
                    in preparation
                
                        Contact
                    
Dr.scient.med. Franz Josef Strauss (franz.notexisting@nodomain.comstrauss@zzm.notexisting@nodomain.comuzh.notexisting@nodomain.comch)

PD Dr.med.dent. Nadja Naenni (nadja.notexisting@nodomain.comnaenni@zzm.notexisting@nodomain.comuzh.notexisting@nodomain.comch)

Prof. Dr.med.dent. Daniel Thoma (daniel.notexisting@nodomain.comthoma@zzm.notexisting@nodomain.comuzh.notexisting@nodomain.comch)

                    Patient Lab
                
                    Type
                
                        Initiative
                    
                    Brief description
                
The Patient Lab innovates and promotes a transdisciplinary partnership with cancer patients, caregivers and public at all stages of research and development of new or improved models of support and care in Suisse romande.

                    Organisation
                
IUFRS, FBM, UNIL, CHUV, Oncology Department CHUV
UNIGE, HUG, Oncology Department HUG

                    Region
                
                                    Geneva
                                
                                    Lausanne
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
                    Contribute at decision-making level
                
                    Take over or lead specific parts of an initiative or a project
                
Provide a specific PPI framework for research, adapted to the local context

                    Before the actual beginning of the research project
                
                    Identify relevant research questions or unmet medical needs
                
                    Support funders with the evaluation of concepts for patient and public involvement in specific projects
                
                    Provide input on a clinical study's design (study protocol)
                
                    Give advice on the information to be provided to study participants
                
Provide training program for patients and researchers

                    During the course of the research project
                
                    Give advice on the information provided to study participants
                
                    Participate in internal meetings as a member
                
Provide coaching and mediation for both patient partners and researchers (participate in meetings upon demand)

                    After the completion of the research project
                
                    Provide input on the evaluation of the study
                
                    Support the communication of research results to study participants and the general public
                
                    Support the publication of the research results
                
Provide evaluation on how PPI was applied

                    Throughout the entire research project
                
                    Support the research project's leaders
                
                    Support the communication of research results
                
                    Give advice as a member of an advisory board, committee or panel
                
Support the project's patient partner(s) and researchers

                    Status of PPI activities
                
                        permanent
                    
                    Website's URL
                
                    https://patientlab.ch/en/
                
                        Contact
                    
Prof. Manuela Eicher

manuela.notexisting@nodomain.comeicher@chuv.notexisting@nodomain.comch

Dr. Alfredo Addeo

alfredo.notexisting@nodomain.comaddeo@hcuge.notexisting@nodomain.comch

                    Patient Preferences Regarding Treatment of Advanced Prostate Cancer Treatments
                
                    Official title of the study
                
                    Patient Preferences Regarding Benefits and Harms of Advanced Prostate Cancer Treatments in Switzerland
                
                    Type
                
                        Project
                    
                    Organisation
                
University of Zurich, Epidemiology, Biostatistics and Prevention Institute (EBPI)

                    Region
                
                                    Zurich
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
                    Before the actual beginning of the research project
                
Review the design of the preference study (study protocol)

                    During the course of the research project
                
Pilot testing of the questionnaire and survey platform

                    After the completion of the research project
                
Patients may be consulted to support the analysis/interpretation or communication of results. This is currently not yet determined.

                    Status of PPI activities
                
                        ongoing
                    
                    Website's URL
                
                    https://www.ebpi.uzh.ch/en/translational_research/chronic_conditions_health/patient_preferences_adv_prostate_cancer_treat.html
                
                        Contact
                    
Milo A Puhan

Dominik Menges

dominik.notexisting@nodomain.commenges@uzh.notexisting@nodomain.comch

                    Patient and Public Involvement (PPI) as part of the Investigator Initiated Clinical Trials (IICT) programme's evaluation process
                
                    Type
                
                        Initiative
                    
                    Brief description
                
                    Patient representatives are involved in the evaluation of submitted projects and assess the PPI aspects of proposed clinical trials. Applicants are required to actively involve PPI representatives in all phases of their trials, especially in the preparation of the grant application.
                
                    Organisation
                
Swiss National Science Foundation (SNSF)

                    Region
                
                                    Bern
                                
                    Role of PPI
                
                    Contribute at decision-making level
                
Evaluate grant applications
Further develop the initaitive
Actively participate in evaluation meetings with the same voting rights as all other members of the evaluation panel

                    Throughout the entire research project
                
Participate in the evaluation process as a PPI expert 
Provide researchers with feedback on the quality of PPI in their clinical trial proposals

                    Status of PPI activities
                
                        permanent
                    
                    Website's URL
                
                    https://www.snf.ch/en/hyaJhBlfsmd618fO/funding/programmes/iict
                
                        Contact
                    
Deborah Studer

deborah.notexisting@nodomain.comstuder@snf.notexisting@nodomain.comch

                    Patient and Public Involvement Campus Stiftung Lindenhof Bern
                
                    Type
                
                        Initiative
                    
                    Brief description
                
                    Establish an expert group (consisting of patients) that can be involved in research activities
                
                    Organisation
                
Campus SLB (Stiftung Lindenhof Bern)

                    Region
                
                                    Bern
                                
                    Role of PPI
                
                    Respond to specific questions and provide general advice
                
                    Contribute at decision-making level
                
Share experience 
Evaluate study documents

                    Before the actual beginning of the research project
                
                    Give advice on the information to be provided to study participants
                
Share experience
Evaluate the benefit that research projects and clinical studies have for patients 
Review study documents (particularly patient information)
Assess the risks and effort involved for patients

                    During the course of the research project
                
Respond to specific questions and provide general advice 
Contribute at a decision-making level
Share experience and evaluate study documents (particularly patient information)

                    After the completion of the research project
                
                    Support the communication of research results to study participants and the general public
                
Share experience
Support the communication of results in lay language
Evaluate the benefit for patients after a project is completed

                    Throughout the entire research project
                
Respond to specific questions and provide general advice 
Contribute at a decision-making level
Share experience 
Evaluate study documents

                    Status of PPI activities
                
                        permanent
                    
                    Website's URL
                
                    https://campusslb.ch/
                
                        Contact
                    
Janine Antonov

campus.notexisting@nodomain.comslb@lindenhofgruppe.notexisting@nodomain.comch

                    Patient involvement in clinical research
                
                    Official title of the study
                
                    Patient involvement in clinical cancer research (Il coinvolgimento del paziente nella ricerca clinica nei tumori)
                
                    Type
                
                        Initiative
                    
                    Brief description
                
The primary objective of this initiative is to educate cancer patients, followed at IOSI, but not exclusively, to play an active role in research, similar to what is done by EUPATI in patients with different diseases, but not only in cancer. The pursuit of this objective takes place through successive operational phases, each with an objective.
Presentation of the project, establishment of a coordination group and sensibilization of health care professionals to collaborate in identifying patients interested in the initiative.
Preparation of training materials
Identification with the help of health care professionals patients interested in the initiative and creation of a database.
Training of IOSI patients who are willing to play a role in raising awareness with other patients and/or representatives within research-related boards. Creation of IOSI patient representatives who are empowered to respond to certain requests.
Activation of patient Request to play an advocacy/active role towards other patients such as explanation/dissemination of research results to other patients and to the public, active role in patient informed consent development, in protocol schedules, ...

                    Organisation
                
EOC - Ente Ospedaliero Cantonale
IOSI - Instituto Oncologico della Svizzera Italiana

                    Region
                
                                    Bellinzona
                                
                                    Ticino
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
                    Contribute at decision-making level
                
                    Before the actual beginning of the research project
                
                    Identify relevant research questions or unmet medical needs
                
                    Provide input on a clinical study's design (study protocol)
                
Provide input on informed consent

                    During the course of the research project
                
Participation in the discussion of the development of the study
Participation to the discussion and evaluation of the study results 

                    After the completion of the research project
                
                    Support the communication of research results to study participants and the general public
                
                    Throughout the entire research project
                
                    Support the communication of research results
                
                    Status of PPI activities
                
                        permanent
                    
                    Website's URL
                
                    not yet available
                
                        Contact
                    
Angela Tolotti

angela.notexisting@nodomain.comtolotti@eoc.notexisting@nodomain.comch
Cristiana Sessa

cristiana.notexisting@nodomain.comsessa@eoc.notexisting@nodomain.comch

                    Pilot Study for peer-led self-management program for Swiss breast cancer survivors
                
                    Type
                
                        Project
                    
                    Organisation
                
Lausanne University Hospital (CHUV)
University of Lausanne (UNIL)

                    Region
                
                                    Lausanne
                                
                    Role of PPI
                
                    Respond to specific questions and provide general advice
                
                    Contribute at decision-making level
                
                    Take over or lead specific parts of an initiative or a project
                
Providing the patient perspective in evaluating clinical trials on human subjects, protocols, consent forms

                    Before the actual beginning of the research project
                
                    Provide input on a clinical study's design (study protocol)
                
                    Give advice on the information to be provided to study participants
                
                    Throughout the entire research project
                
                    Support the research project's leaders
                
                    Give advice as a member of an advisory board, committee or panel
                
                    Status of PPI activities
                
                        completed

                    Proactive Involvement of Patients and Public in Clinical Research at the USZ
                
                    Official title of the study
                
                    Proactive Involvement of Patients and Public in Clinical Research at the USZ
                
                    Type
                
                        Initiative
                    
                    Brief description
                
For a long time, there was a clear separation of roles in which researchers actes as experts and patients were merely regarded as participants in studies. Wth our project at the University Hospital Zurich (USZ), we want to promote the paradigm shift in which patients are increasingly recognized as experts.

Our goal is close, interdisciplinary cooperation with patients as well as various directorates and departments within the USZ in order to establish PPI sustainably at the USZ and to offer further training and consulting opportunities for researchers. 

                    Organisation
                
Clinical Trials Center (University Hospital Zurich)

                    Region
                
                                    Zurich
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
                    Contribute at decision-making level
                
                    Take over or lead specific parts of an initiative or a project
                
                    Before the actual beginning of the research project
                
                    Identify relevant research questions or unmet medical needs
                
                    Support funders with the evaluation of concepts for patient and public involvement in specific projects
                
                    Provide input on a clinical study's design (study protocol)
                
                    During the course of the research project
                
                    Give advice on the information provided to study participants
                
                    Participate in internal meetings as a member
                
Development of new concepts to publicize PPI (homepage, videos, information material).
Development and implementation of training courses for patients and researchers.

                    After the completion of the research project
                
                    Support the communication of research results to study participants and the general public
                
                    Throughout the entire research project
                
                    Support the research project's leaders
                
                    Support the communication of research results
                
                    Give advice as a member of an advisory board, committee or panel
                
                    Status of PPI activities
                
                        permanent
                    
                    Website's URL
                
                    https://www.usz.ch/forschung/ppi/patient-and-public-involvement/
                
                        Contact
                    
Silke Ludwig

                    Program for meaningful Patient and Public Involvement in Clinical Research
                
                    Type
                
                        Initiative
                    
                    Brief description
                
Implementing a comprehensive program to facilitate meaningful Patient and Public Involvement in Clinical Research for University of Bern and University Hospital:
Consultation and support to researchers for integrating PPI into their research projects.
Establishment of a PPI Panel consisting of patient representatives who can be consulted for research projects.
Provision of internal training programs and materials aimed at educating researchers and patient representatives to facilitate meaningful PPI and enabling patient representatives to effectively fulfil their role.
Education in PPI for participants, researchers, grant panels and committees, utilising publicly available materials and customising as required.

                    Organisation
                
Department of Clinical Research (DCR), University of Bern

                    Region
                
                                    Bern
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
                    Throughout the entire research project
                
The DCR PPI program provides personalized consultations, resources, and tools to help researchers integrate PPI into their research. This includes assisting in identifying opportunities and methods for patient involvement and formulating project-specific PPI plans. 

The DCR establishes the "DCR Patient:innen Gremium," a panel of trained patient representatives available for consultation on a diverse range of clinical research matters. Researchers can consult the panel members and seek information, advice, and collaboration from the panel, benefiting from the patient and public perspective throughout the entire project lifecycle, including development, implementation, and dissemination. The panel members have received internal training in PPI.

The project delivers education and training on PPI to researchers, patients, and the public. It equips patients with knowledge of trials, ethics, and effective participation, while helping researchers engage with patients and utilize their insights effectively.

                    Status of PPI activities
                
                        permanent
                    
                    Website's URL
                
                    https://www.dcr.unibe.ch
                
                        Contact
                    
Kristin Bivens

ppi.notexisting@nodomain.comdcr@unibe.notexisting@nodomain.comch

                    Research priorities in Primary Ciliary Dyskinesia - patient's persperctive
                
                    Official title of the study
                
                    Investigating the Perspective of Patients with Primary Ciliary Dyskinesia (PCD) on Health Services and Research Priorities
                
                    Type
                
                        Project
                    
                    Brief description
                
Patients can provide important perspectives for health research that may differ from those of health care professionals. This is particulary important for a rare disease with many knowledge gaps like PCD. With this project, we aim to identify research priorities in PCD from the patient's perspective in a mixed-methods study, which includes semi-structured interviews and an online survey.

                    Organisation
                
The Institute of Social and Preventive Medicine (ISPM) 

                    Region
                
                                    Bern
                                
                                    international
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
                    Contribute at decision-making level
                
                    Before the actual beginning of the research project
                
                    Identify relevant research questions or unmet medical needs
                
                    Support funders with the evaluation of concepts for patient and public involvement in specific projects
                
                    Provide input on a clinical study's design (study protocol)
                
                    Give advice on the information to be provided to study participants
                
                    During the course of the research project
                
                    Give advice on the information provided to study participants
                
                    Participate in internal meetings as a member
                
                    After the completion of the research project
                
                    Support the communication of research results to study participants and the general public
                
                    Support the publication of the research results
                
                    Throughout the entire research project
                
                    Support the research project's leaders
                
                    Support the communication of research results
                
                    Give advice as a member of an advisory board, committee or panel
                
                    Status of PPI activities
                
                        completed
                    
                        Contact
                    
Myrofora Goutaki

Myrofora.notexisting@nodomain.comgoutaki@ispm.notexisting@nodomain.comunibe.notexisting@nodomain.comch

                    RheumaCura Foundation
                
                    Type
                
                        Initiative
                    
                    Brief description
                
                    RheumaCura is a non-profit, tax-exempted Swiss foundation dedicated to improving the care of people affected by rheumatic and musculoskeletal diseases through supporting scientific research.
It is led by patients and citizens who believe that the knowledge and experiences of those affected should be considered in medical research, and that the involvement of patients and the public in the design and conduct of research will help to find better treatment and cures.
We raise awareness and informs patients and the public about research, new treatments, and knowledge about how to best manage disease and will work cooperatively and transparently with others who share our vision.
                
                    Organisation
                
RheumaCura Foundation

                    Region
                
                                    Bern
                                
                                    international
                                
                    Before the actual beginning of the research project
                
                    Identify relevant research questions or unmet medical needs
                
                    During the course of the research project
                
Initiate
Co-design
Consult and cooperate with researchers
Inform the public

                    After the completion of the research project
                
                    Support the communication of research results to study participants and the general public
                
                    Support the publication of the research results
                
                    Status of PPI activities
                
                        ongoing
                    
                    Website's URL
                
                    https://www.rheumacura.ch/en/
                
                        Contact
                    
Judith Safford, President

judith.notexisting@nodomain.comsafford@rheumacura.notexisting@nodomain.comch

                    SAKK Patient Advisory Board
                
                    Type
                
                        Initiative
                    
                    Brief description
                
The SAKK Patient Advisory Board offers advice on research projects, communications, and strategic matters

                    Organisation
                
Swiss Group for Clinical Cancer Research (SAKK)

                    Region
                
                                    Bern
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
                    Contribute at decision-making level
                
Help prepare medical information that is patient-friendly and easy to understand

                    Before the actual beginning of the research project
                
                    Identify relevant research questions or unmet medical needs
                
                    Support funders with the evaluation of concepts for patient and public involvement in specific projects
                
                    Provide input on a clinical study's design (study protocol)
                
                    Give advice on the information to be provided to study participants
                
                    During the course of the research project
                
                    Give advice on the information provided to study participants
                
                    Participate in internal meetings as a member
                
                    After the completion of the research project
                
                    Support the communication of research results to study participants and the general public
                
                    Throughout the entire research project
                
                    Support the communication of research results
                
                    Give advice as a member of an advisory board, committee or panel
                
                    Status of PPI activities
                
                        permanent
                    
                    Website's URL
                
                     https://www.sakk.ch/en/about-us/patient-advisory-board#tab-motivations-for-engagement
                
                        Contact
                    
Christine Aeschlimann

christine.notexisting@nodomain.comaeschlimann@sakk.notexisting@nodomain.comch

                    SALuBRITY PPI project
                
                    Official title of the study
                
                    Involving patients and clinicians in a pilot randomised clinical trial of spinal manual therapy versus nerve root injection for lumbar radiculopathy: the SALuBRITY randomised clinical trial patient and public involvement project
                
                    Type
                
                        Project
                    
                    Brief description
                
A PPI project will be embedded within the SALuBRITY pilot trial, a two parallel group, double sham controlled, randomised clinical trial. The study aims to compare the effectiveness of spinal manual therapy and corticosteroid nerve root injections, two methods commonly used to treat patients with lumbar radiculopathy. We aim to gather patients’ and clinicians’ perspectives and involve them in decisions related to the research question and objectives, proposed trial recruitment processes and methods, and proposed outcome measures.

                    Organisation
                
University of Zurich, Epidemiology, Biostatistics and Prevention Institute (EBPI)
University Spine Center Zurich (UWZH), Balgrist University Hospital
Institute for Implementation Science in Health Care (IfIS), University of Zurich

                    Region
                
                                    Zurich
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
                    Contribute at decision-making level
                
                    Before the actual beginning of the research project
                
                    Identify relevant research questions or unmet medical needs
                
                    Provide input on a clinical study's design (study protocol)
                
                    Give advice on the information to be provided to study participants
                
Participate in a kick-off event for preparation and empowerment

                    During the course of the research project
                
Give advice on the recruitment process

                    After the completion of the research project
                
                    Support the communication of research results to study participants and the general public
                
                    Throughout the entire research project
                
                    Give advice as a member of an advisory board, committee or panel
                
                    Status of PPI activities
                
                        ongoing
                    
                        Contact
                    
Principal Investigator: Dr. Cesar A. Hincapié DC PhD

Senior Scientist and Head of EBPI-UWZH Musculoskeletal Epidemiology Research

Epidemiology, Biostatistics and Prevention Institute (EBPI), University of Zurich

University Spine Centre Zurich (UWZH), Balgrist University Hospital and University of Zurich

cesar.notexisting@nodomain.comhincapie@uzh.notexisting@nodomain.comch
Project Partner: Prof. Dr. Lauren Clack PhD

Professor of Implementation Science in Health Care

Institute for Implementation Science in Health Care

University of Zurich

lauren.notexisting@nodomain.comclack@uzh.notexisting@nodomain.comch

                    SCTO PPI Working Group
                
                    Type
                
                        Initiative
                    
                    Brief description
                
The Swiss Clinical Trial Organisation (SCTO) PPI Working Group is composed of representatives from academia, clinical research, funding organisations, university hospitals, the CTU Network as well as patients and their organisations. Its primary purpose is to support the SCTO in their efforts related to patient and public involvement (PPI) activities and to lay the groundwork for the establishment of the Swiss PPI Forum for academic clinical research in Switzerland.
The key responsibilities of this multistakeholder working group include, but are not limited to, the following activities:
Facilitating the exchange of information and sharing valuable lessons learnt.
Disseminating regular updates from working group members and their networks to foster alignment in local and national PPI projects and initiatives.
Providing guidance and input on specific topics, projects, templates, and documents related to PPI.

                    Organisation
                
Swiss Clinical Trial Organisation (SCTO)

                    Region
                
                                    national
                                
                                    Bern
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
                    Contribute at decision-making level
                
                    Take over or lead specific parts of an initiative or a project
                
                    Status of PPI activities
                
                        ongoing
                    
                    Website's URL
                
                    https://www.scto.ch/en/patient-and-public-involvement.html
                
                        Contact
                    
ppi@scto.notexisting@nodomain.comch

                    SPHN & PHRT National Data Streams 
                
                    Type
                
                        Initiative
                    
                    Brief description
                
                    National Data Streams (NDS) are funded by the Swiss Personalized Health Network (SPHN) and Personalized Health and Related Technologies (PHRT; ETH Domain). NDS projects run from June 2022 for 3 years. NDS are multidisciplinary, national consortia of clinical and science partners. NDS encompass clinical and analytical (e.g., multiomics) data, conduct and host research projects, and should serve the research and healthcare community long-term. Involving patients and/or the public is a mandatory requirement for NDS. 
                
                    Organisation
                
Swiss Personalized Health Network (SPHN)
ETH Personalized Health and Related Technologies (PHRT)

                    Region
                
                                    Bern
                                
                                    national
                                
                                    Zurich
                                
                    Role of PPI
                
                    Respond to specific questions and provide general advice
                
                    Contribute at decision-making level
                
                    Before the actual beginning of the research project
                
                    Support funders with the evaluation of concepts for patient and public involvement in specific projects
                
PPI experts are part of the expert panel evaluating NDS project proposals. 
Involving patients and/or the public and elaborating a PPI concept is a mandatory requirement for NDS proposals.

                    Throughout the entire research project
                
Proactive involvement of patients and/or the public, e.g. including:
•	Advise as a member of an advisory board/committee/panel
•	PPI experts involved in the monitoring procedure of NDS projects 
•	Various roles in the funded NDS projects 

                    Status of PPI activities
                
                        permanent
                    
                    Website's URL
                
                    https://sphn.ch/services/funding/nds/
                
                        Contact
                    
Sarah Vermij

nds@sphn.notexisting@nodomain.comch

                    SPHN (Swiss Personalized Health Network) ELSI (Ethical, Legal and Social Issues) Advisory Group (ELSlag)
                
                    Type
                
                        Initiative
                    
                    Brief description
                
                    The ELSlag is an advisory body to the entire SPHN. It is tasked to address key ethical, legal and societal challenges that are relevant to SPHN's activities. At the same time, the ELSlag aims to sensitize all stakeholders about the latest developments, regulations and frameworks in order to deal with research data in a unified and ethically legal manner
                
                    Organisation
                
Swiss Personalized Health Network (SPHN)

                    Region
                
                                    national
                                
                                    Bern
                                
                    Role of PPI
                
                    Respond to specific questions and provide general advice
                
                    Contribute at decision-making level
                
                    Throughout the entire research project
                
A patient representative is a full member of the ELSIag, elaborating policies and guidelines for the SPHN initiative. 
A patient representative is a full member of the SPHN National Steering Board deciding on the strategy of the overall SPHN initiative and the funding of specific projects.  

                    Status of PPI activities
                
                        permanent
                    
                    Website's URL
                
                    https://sphn.ch/organisation/governance/elsi-advisory-group/
                
                        Contact
                    
Prof. Effy Vayena, Institute of Translational Medicine, ETH Zurich,

chairperson of the SPHN ELSlag

info@sphn.notexisting@nodomain.comch

                    SYNERGIES Projects
                
                    Type
                
                        Project
                    
                    Brief description
                
                    Meeting for Minds is a not-for-profit organisation dedicated to research of the brain and disorders of the brain in partnership with people living with mental illness.
Meeting for Minds = SYNERGIES is not a scientific project per se but is designed to enhance the research process by introducing a “Co-operative Inquiry” programme involving people with lived experience of mental illness into specific brain research projects as partners and not subjects for research.
                
                    Organisation
                
Meeting for Minds

                    Region
                
                                    Bern
                                
                                    Lausanne
                                
                                    Zurich
                                
                    Role of PPI
                
                    Provide information
                
                    Before the actual beginning of the research project
                
The interactions are “open” and the content defined by the participants and their willingness and capacity to explore combinations of all possible scenarios

                    During the course of the research project
                
                    Participate in internal meetings as a member
                
                    After the completion of the research project
                
                    Provide input on the evaluation of the study
                
                    Support the communication of research results to study participants and the general public
                
                    Support the publication of the research results
                
                    Throughout the entire research project
                
                    Support the research project's leaders
                
                    Support the communication of research results
                
                    Give advice as a member of an advisory board, committee or panel
                
                    Status of PPI activities
                
                        completed
                    
                    Website's URL
                
                    https://meetingforminds.com/synergies/

                    Set-up and roll-out of patient participation in SCQM research
                
                    Type
                
                        Initiative
                    
                    Brief description
                
                    In 2021 SCQM elected two patient representatives into the Board of Trustees. The SCQM managing director is also has patient expertise and is enrolled in the SCQM database.
SCQM has been collecting annual PROMS Patient-reported outcome measures) data for over 20 years, and since 2016 it collects monthly PROMS data from patients using the App MySCQM. 
First initiatives to involve patients directly in research have started and the intention is to develop these in the next years and become a leading expert in patient involvement.

                    Organisation
                
Swiss Clinical Quality Management in Rheumatic Diseases (SCQM) Foundation

                    Region
                
                                    Zurich
                                
                                    national
                                
                    Role of PPI
                
Board members with specific responsibility to bring in the patient voice to SCQM

                    Status of PPI activities
                
                        permanent
                    
                    Website's URL
                
                    https://www.scqm.ch/
                
                        Contact
                    
Judith Safford, Managing Director

                    Swiss Cerebral Palsy Registry (Swiss-CP-Reg)
                
                    Official title of the study
                
                    Swiss Cerebral Palsy Registry (Swiss-CP-Reg)
                
                    Type
                
                        Initiative
                    
                    Brief description
                
Swiss-CP-Reg collects and exchanges national data on people living with CP to answer clinically and socially relevant questions. Its structure enables retrospective and prospective data collection and knowledge exchange between experts to optimise and standardise treatment and to improve the health and quality of life of those diagnosed with CP in Switzerland.

                    Organisation
                
The Institute of Social and Preventive Medicine (ISPM) 

                    Region
                
                                    Bern
                                
                                    national
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
                    Take over or lead specific parts of an initiative or a project
                
The involvement can vary between subprojects.

                    Before the actual beginning of the research project
                
                    Identify relevant research questions or unmet medical needs
                
                    Give advice on the information to be provided to study participants
                
Support development of questionnaires and interviews for research projects
The involvement can vary between subprojects.

                    During the course of the research project
                
                    Give advice on the information provided to study participants
                
                    Participate in internal meetings as a member
                
The involvement can vary between subprojects.

                    After the completion of the research project
                
                    Support the communication of research results to study participants and the general public
                
The involvement can vary between subprojects.

                    Throughout the entire research project
                
                    Support the communication of research results
                
                    Give advice as a member of an advisory board, committee or panel
                
The involvement can vary between subprojects.

                    Status of PPI activities
                
                        permanent
                    
                    Website's URL
                
                    https://www.swiss-cp-reg.ch/
                
                        Contact
                    
swiss-cp-reg@ispm.notexisting@nodomain.comunibe.notexisting@nodomain.comch

                    Swiss Pediatric Inflammatory Brain Disease Registry (Swiss-Ped-IBrainD)
                
                    Official title of the study
                
                    Swiss Pediatric Inflammatory Brain Disease Cohort Study
                
                    Type
                
                        Initiative
                    
                    Brief description
                
                    The Swiss Pediatric Inflammatory Brain Disease Cohort Study has a registry at its core. In the registry we systematically collect medical data on pediatric patients with inflammatory brain diseases (IBrainDs).
Our focus is on collecting extensive information on the diagnosis, disease course, and treatment of the included diseases.
However, the registry is not just a simple data collection, it is a dynamic structure that promotes the communication and collaboration of the participating centers and specialists.
We aim to improve the medical care and quality of life of children with IBrainDs.
                
                    Organisation
                
The Institute of Social and Preventive Medicine (ISPM) 

                    Region
                
                                    Bern
                                
                                    national
                                
                    Role of PPI
                
                    Respond to specific questions and provide general advice
                
                    During the course of the research project
                
Planned to involve patients in the development of a questionnaire for a nested survey study

                    Status of PPI activities
                
                        ongoing
                    
                    Website's URL
                
                    https://www.swiss-ped-ibraind.ch/en/swiss-pediatric-inflammatory-brain-disease-registry-swiss-ped-ibraind/
                
                        Contact
                    
swiss-ped-ibraind@ispm.notexisting@nodomain.comunibe.notexisting@nodomain.comch

                    Swiss Rare Disease Registry
                
                    Official title of the study
                
                    Schweizer Register für seltene Krankheiten (SRSK)
                
                    Type
                
                        Initiative
                    
                    Brief description
                
                    The Swiss Rare Disease Registry (SRDR) is a national registry for rare diseases. The SRDR collects data on people with a rare disease who live and/or receive treatment in Switzerland. Their personal information as well as information about their disease, examinations they have undergone, and the institutions where they have been treated are collected in the SRDR. The objective of the SRDR is to inform people with a rare disease about planned studies and surveys and to invite them to participate. Another important objective is to establish contact between people with a rare disease.
                
                    Organisation
                
The Institute of Social and Preventive Medicine (ISPM) 

                    Region
                
                                    Bern
                                
                                    national
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
                    Contribute at decision-making level
                
                    Take over or lead specific parts of an initiative or a project
                
                    Before the actual beginning of the research project
                
                    Identify relevant research questions or unmet medical needs
                
                    Support funders with the evaluation of concepts for patient and public involvement in specific projects
                
                    Provide input on a clinical study's design (study protocol)
                
                    Give advice on the information to be provided to study participants
                
                    During the course of the research project
                
                    Give advice on the information provided to study participants
                
                    Participate in internal meetings as a member
                
                    After the completion of the research project
                
                    Provide input on the evaluation of the study
                
                    Support the communication of research results to study participants and the general public
                
                    Support the publication of the research results
                
                    Throughout the entire research project
                
                    Support the research project's leaders
                
                    Support the communication of research results
                
                    Give advice as a member of an advisory board, committee or panel
                
                    Status of PPI activities
                
                        permanent
                    
                    Website's URL
                
                    www.raredisease.ch
                
                        Contact
                    
Michaela Fux

srdr@ispm.notexisting@nodomain.comunibe.notexisting@nodomain.comch

                    Swiss Transplant Cohort Study (STCS) Patient Advisory Board
                
                    Type
                
                        Initiative
                    
                    Brief description
                
Patient advisory board to better integrate the patient's perspective and to incorporate the needs of transplanted persons into research projects (studies)

                    Organisation
                
University Hospital Basel

                    Region
                
                                    Basel
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
                    Contribute at decision-making level
                
                    Before the actual beginning of the research project
                
                    Identify relevant research questions or unmet medical needs
                
                    Provide input on a clinical study's design (study protocol)
                
                    Give advice on the information to be provided to study participants
                
                    During the course of the research project
                
                    Give advice on the information provided to study participants
                
                    Participate in internal meetings as a member
                
                    After the completion of the research project
                
                    Support the communication of research results to study participants and the general public
                
                    Support the publication of the research results
                
                    Throughout the entire research project
                
                    Give advice as a member of an advisory board, committee or panel
                
                    Status of PPI activities
                
                        permanent
                    
                    Website's URL
                
                    https://www.stcs.ch/about/participants-and-community
                
                        Contact
                    
Sonja Beckmann

sonja.notexisting@nodomain.combeckmann@unibas.notexisting@nodomain.comch

                    Swissmedic’s working group with patient and consumer organisations
                
                    Type
                
                        Initiative
                    
                    Brief description
                
This working group aims to provide patient and consumer organisations in Switzerland with a platform where they can exchange information and experiences.
The following objectives are at the forefront of this initiative:
Listen to and note patients’ and consumers’ experiences regarding issues related to medicinal products and medical devices so that they may be included in Swissmedic’s processes where appropriate.
Provide information in a form suitable for the target audience in order to improve patients’ and consumers’ understanding of Swissmedic’s tasks and responsibilities.

                    Organisation
                
Swissmedic

                    Region
                
                                    Bern
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
Involve patient and consumer representatives in defined areas of Swissmedic’s activities

                    Status of PPI activities
                
                        permanent
                    
                    Website's URL
                
                    https://www.swissmedic.ch/swissmedic/en/home/about-us/nationale-zusammenarbeit/collaboration-with-patient-and-consumer-organisations.html
                
                        Contact
                    
networking@swissmedic.notexisting@nodomain.comch

                    The Swiss Childhood Cancer Survivor Study
                
                    Official title of the study
                
                    The Swiss Childhood Cancer Survivor Study (SCCSS)
                
                    Type
                
                        Project
                    
                    Brief description
                
The SCCSS is a population-based, long-term follow-up study including all children diagnosed with cancer before age 20 years, registered in the Childhood Cancer Registry Switzerland (ChCR; available from: www.childhoodcancerregistry.ch), who survived at least 5 years after initial cancer diagnosis. This study is registered at clinicaltrials.gov as NCT03297034. We trace all addresses of potential participants and send them a questionnaire. The main domains covered by the questionnaire are quality of life, physical health, treatments and healthcare, psychological distress, behaviours and lifestyle, and socio-economic aspects of life. Detailed information of the study design is published: Kuehni et al. Int J Epidemiol 2012;41(6):1553–64.

                    Organisation
                
University of Bern

                    Region
                
                                    Bern
                                
                                    national
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
information on health outcomes, behaviours, and needs
Consulted on questionnaire design

                    Before the actual beginning of the research project
                
Personal interviews with survivors, caregivers, and representatives of patient and family support groups to ensure questionnaires and information letters are understandable and include all relevant information
Discussion about important topics for inclusion into the questionnaire
Interaction with support groups to invite participants
Design of a website that describes the study for participants and the public

                    During the course of the research project
                
Phone contacts in case of questions or comments to the study 

                    After the completion of the research project
                
                    Support the publication of the research results
                
Feedback from participants on the questionnaire, study set-up, and results
Dissemination of lay-language summaries of the published results on 1) our website, 2) to funding bodies, and 3) to patient support groups

                    Throughout the entire research project
                
                    Support the communication of research results
                
                    Status of PPI activities
                
                        ongoing
                    
                    Website's URL
                
                    https://www.swiss-ccss.ch
                
                        Contact
                    
Claudia Kuehni

claudia.notexisting@nodomain.comkuehni@ispm.notexisting@nodomain.comunibe.notexisting@nodomain.comch

                    Timing of Revascularization in Patients With Diabetic Foot Ulcer and Non-critical Peripheral Artery Disease (DIFU)
                
                    Official title of the study
                
                    Timing of revascularization in patients with diabetic foot ulcer and non-critical peripheral artery disease: a randomized, controlled trial
                
                    Type
                
                        Project
                    
                    Brief description
                
                    Due to lower extremity arterial disease, diabetic patients with foot ulcers often require lower limb amputation. Restoring arterial supply to the ulcer is the most important factor in healing the diabetic foot ulcer and reduces the risk of amputation. The aim of this study is to demonstrate that in patients with non-critical lower extremity arterial disease and diabetic foot ulcers, immediate revascularization on top of standard wound care results in fewer cardiovascular problems and amputations, as well as improved ulcer healing, compared to the current standard of care.
                
                    Organisation
                
Inselspital (Universitätsspital) Bern

                    Region
                
                                    Bern
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
Provide information about patient facing documentation (flyers, questionnaire, etc.) Feedback on recruitment flow 
Support with ideas its improvement 

                    Before the actual beginning of the research project
                
                    Give advice on the information to be provided to study participants
                
Review the patient questionnaire on weighting of clinical outcome

                    During the course of the research project
                
                    Give advice on the information provided to study participants
                
Questionnaire development
Provide feedback on the operations/logistics of the clinical study (e.g. recruitment improvement)

                    After the completion of the research project
                
not yet decided 

                    Throughout the entire research project
                
                    Support the research project's leaders
                
                    Support the communication of research results
                
                    Give advice as a member of an advisory board, committee or panel
                
                    Status of PPI activities
                
                        ongoing
                    
                        Contact
                    
Györgyi Hamvas

gyoergyi.notexisting@nodomain.comhamvas@insel.notexisting@nodomain.comch

                    Together for research that moves us forward
                
                    Type
                
                        Project
                    
                    Brief description
                
In this free course, researchers and patients learn together what PPI is and how suitable measures can be practically implemented in clinical research. There is also the opportunity to network directly for future research projects. The course is held in German.
The course consists of:
Part 1: Online course (approx. 1-4 hours depending on prior knowledge in self-study)  
Part 2: Workshop on 25 June 2024, 9.00-13.00, at the Department of Clinical Research in Basel
Please register using the registration form.

                    Organisation
                
University Hospital Basel

                    Region
                
                                    Basel
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
                    Status of PPI activities
                
                        ongoing
                    
                    Website's URL
                
                    https://dkf.unibas.ch/de/aus-weiterbildung/patient-and-public-involvement-ppi/gemeinsam-fuer-forschung-die-uns-weiterbringt/
                
                        Contact
                    
Sandra Kohlmaier, University of Basel, Department of Clinical Research

sandra.notexisting@nodomain.comkohlmaier@usb.notexisting@nodomain.comch

                     Training in research partnerships
                
                    Type
                
                        Project
                    
                    Brief description
                
In October 2023, researchers and patients met in Geneva for the very first training course in French-speaking Switzerland dedicated to patient partnerships in clinical research. The course is the result of a fruitful collaboration between the PartnerRec Network and the Patients Partenaires +3P Programme at the HUG and Le Laboratoire des Patient-e-s de l'UNIL-CHUV/SCCL.
Based on the belief that partnership in healthcare should be experienced at the training stage, this course is aimed at researchers and patients alike.
Two sessions are offered each year, in spring and autumn, alternating between Geneva and Lausanne.
Information on registration can be found here. (in French)

                    Organisation
                
Geneva University Hospitals (HUG)

                    Region
                
                                    Geneva
                                
                    Role of PPI
                
                    Provide information
                
                    Respond to specific questions and provide general advice
                
                    Status of PPI activities
                
                        ongoing
                    
                    Website's URL
                
                    https://recherche.hug.ch/reseau-partenariat-en-recherche-clinique
                
                        Contact
                    
Clinical Research Partnership Network

Nadia Elia

nadia.notexisting@nodomain.comelia@hug.notexisting@nodomain.comch

                    Treatment of lymphedema after breast cancer therapy
                
                    Official title of the study
                
                    Surgical versus Conservative Complex Physical Decongestion Therapy (CDT) for Chronic Breast Cancer-Related Lymphedema (BCRL): A Pragmatic, Randomised, Multicentre Superiority Trial
                
                    Type
                
                        Project
                    
                    Brief description
                
Prospective randomised-controlled intervention study.

The study evaluates whether surgical treatment of chronic breast cancer-related lymphedema is superior to conservative Complex Physical Decongestive Therapy alone.

                    Organisation
                
University Hospital Basel

                    Region
                
                                    Basel
                                
                    Role of PPI
                
                    Respond to specific questions and provide general advice
                
                    Contribute at decision-making level
                
Concerns, opinions, and wishes in the form of interviews.

                    Before the actual beginning of the research project
                
                    Provide input on a clinical study's design (study protocol)
                
                    Give advice on the information to be provided to study participants
                
Concerns, opinions, and wishes in the form of interviews.

                    During the course of the research project
                
                    Give advice on the information provided to study participants
                
                    Participate in internal meetings as a member
                
                    After the completion of the research project
                
                    Support the communication of research results to study participants and the general public
                
                    Support the publication of the research results
                
                    Throughout the entire research project
                
                    Support the communication of research results
                
                    Give advice as a member of an advisory board, committee or panel
                
                    Status of PPI activities
                
                        ongoing
                    
                    Website's URL
                
                    https://dkf.unibas.ch/en/competencies/iict/treatment-of-breast-cancer-related-lymphedema/
                
                        Contact
                    
PD Dr. Elisabeth A. Kappos

elisabeth.notexisting@nodomain.comkappos@usb.notexisting@nodomain.comch

Conducting clinical research across borders?
We promote international collaboration.

Conducting clinical research across borders?
We promote international collaboration.

Members

Associate member

PPI Mapping

Local and national PPI initiatives and projects in academic clinical research

Overview of identified PPI initiatives and projects

Members

Associate member

Conducting clinical research across borders? We promote international collaboration.

PPI Mapping

Local and national PPI initiatives and projects in academic clinical research

Overview of identified PPI initiatives and projects

Members

Associate member

Conducting clinical research across borders?
We promote international collaboration.