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The SCTO is an independent organisation and is based on a joint initiative of the Swiss National Science Foundation and the Swiss Academy of Medical Sciences.

As of 2017, the SCTO is a research infrastructure of national importance funded by the State Secretariat of Education, Research and Innovation and the Swiss National Science Foundation.

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PPI Mapping

Local and national PPI initiatives and projects in academic clinical research

This figure shows the results of an online survey and mapping exercise 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.

The survey results show that there is a wide range of patient and public involvement (PPI) activities in the area of academic clinical research. The individual initiatives and projects, including the type of involvement, are summarised below on this page.

Through the survey, a total of 45 PPI initiatives and projects in the field of academic clinical research were identified (as of April 2022). They 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 at info@scto.notexisting@nodomain.comch.

Overview of identified PPI initiatives and projects

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  • 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
  • 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: Easier access to hearing tests after an illness in childhood or adolesence

    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
  • Lausanne coproduction hub (Groupe lausannois de coproduction)

    Unisanté - Center for Primary Care and Public Health

    Lausanne
  • MED-fLAG

    Lausanne University Hospital (CHUV)

    Lausanne
  • 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
  • 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 Lab

    IUFRS, FBM, UNIL, CHUV, Oncology Department CHUV

    UNIGE, HUG, Oncology Department HUG

    Geneva
    Lausanne
  • Patient Preferences Regarding Benefits and Harms of Advanced Prostate Cancer Treatments in Switzerland

    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
  • 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
  • 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
  • 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 proejct

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

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 proejct

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

Status of PPI activities

ongoing

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 proejct

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

ongoing

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 proejct

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 proejct

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
www.dayone.swiss/what-we-do/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 proejct

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

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 proejct

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 proejct

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

ongoing

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 proejct

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/de/Lehre-Forschung/Forschung/Forschung-Implementation-Science-in-Pflegewissenschaft/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: Easier access to hearing tests after an illness in childhood or adolesence
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 proejct

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

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 proejct

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

ongoing

Website's URL
www.immunaid.eu
Contact

Malena Vetterli - PAO partner
info@fmfandaid.notexisting@nodomain.comorg

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:

  1. To promote Unisanté’s role as an academic hub for creating knowledge and building capacity in coproduction in healthcare.
  2. 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

permanent

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 proejct

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

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 proejct

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

ongoing

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 proejct

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

Contact

Sandra Kohlmaier
sandra.notexisting@nodomain.comkohlmaier@usb.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 proejct

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 proejct

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/etre-partenaire/partenaire-contributeur-recherche
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 proejct

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 proejct

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 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 proejct

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 Benefits and Harms of Advanced Prostate Cancer Treatments in Switzerland
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 proejct

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 proejct

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.

  1. Presentation of the project, establishment of a coordination group and sensibilization of health care professionals to collaborate in identifying patients interested in the initiative.
  2. Preparation of training materials
  3. Identification with the help of health care professionals patients interested in the initiative and creation of a database.
  4. 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.
  5. 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 proejct

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

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 proejct

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

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 proejct

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 proejct

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

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 proejct

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://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 proejct

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 proejct

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 proejct

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@usb.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 proejct

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 proejct

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