Guides

Guides to involve stakeholders in your research and promote openness and collaboration

PPIE Guide

Patient and Public Involvement and Engagement in research – A “How to” Guide for researchers

This guide is for learning why and how to meaningfully involve patients and the public in your research. In Chapter 1, you find a detailed description of what PPIE stands for, why it is necessary to get involved, and how we co-created this ‘How to’ guide together with a multi-stakeholder group consisting of researchers from multiple disciplines, citizen scientists, youth and patient advocates. In Chapter 2, you will find the main outcomes from all co-creation workshops regarding PPIE principles. This includes patient and public interaction, relevant governance structures (including budget and project oversight) and the organizational framework that facilitates PPIE activities. In chapter 3, we provide self-assessment checklists and present self-assessment PPIE tools. Chapter 4 covers suggestions on how to monitor PPIE activities, followed by additional resources such as key papers, databases or other important guides (Chapter 5).

 
 
 

Are you looking for support on how to implement PPIE activities in your research? Have a look at our support services.

PPIE Guide (EN and DE)

Checklist for the submission of research projects with public involvement (DE)

Public engagement and involvement in research can take place at several levels, this checklist is intended to help applicants and ethics committees to classify their public engagement and involvement activities and to reflect on the relevant ethical aspects. However, this checklist does not replace the requirements of the ethics committee to which the application is submitted.

Checklist (DE)

A short guide on patient partnerships in rare disease research projects

This guide has been developed with the help of a working group comprising of patient representatives and research funders and has been submitted for review by independent academic researchers. Its main goal is to encourage fruitful, sustainable and enduring partnerships between scientists and patient organizations, co-leading the way for systematic patient-centered research.

Guide (EN)
a. (c) URORDIS-Rare Diseases Europe

innOsci – Future Skills for Openness/ A framework for promoting openness in science and business

This paper focuses on the question of which mindset, skills and tools academics in business (Open Innovation) and science (Open Science) as well as in their working environments in companies, universities and research institutions need, in order to promote a culture of openness. It sheds light on which competencies organizations can promote so that people in the above-mentioned institutions can successfully (co-) create the desired change towards more openness.

innOsci Framework

Quadruple helix collaborations in innovation

Quadruple Helix Collaborations (QHCs) is a form of collaboration in research and development between the four major sectors of society: academia, business, government, and civil society.

Our center has been a partner of the European Horizon 2020 project “RiConfigure”, which aimed at making such cross-sectoral collaborations thrive and overcoming the challenges that the actors might face by gathering practical advice on how to make these collaborations a success.

RiConfigure guides

Guides from external sources

Guide for Engagement and Dissemination recognition payments for public contributors

The NIHR Centre for Engagement and Dissemination (CED) is committed to promoting equality, diversity and inclusion in all areas of our work. Their short Guide gives an orientation on how to reimburse public contributors.

Access: Recognition payments for public contributors (short version)

Access: Recognition payments for public contributors (long version)

A Field Guide to Public Engagement and Culture Change

“A Field Guide to Public Engagement and Culture Change” of the Bath University is for anyone who is working to raise the profile of public engagement with research within their institution. These could be public engagement professionals, researchers with departmental responsibility for public engagement, or professionals who have public engagement as part of their broader remit within higher education institutions.

Access: Field Guide

Other guides

How to publish Patient & Public Involvement activities

GRIPP2- Form:

GRIPP2 represents the first international evidence-based, consensus-informed guidance for reporting patient and public involvement in research.  GRIPP2 aims to improve the quality, transparency, and consistency of the international PPI evidence base, to ensure PPI practice is based on the best evidence.

Access: 

GRIPP2 long form (en)

Support and contacts

Do you have questions or comments about our resources or are you looking for support on how to implement involvement activities in your research? Contact us or have a look at our support services!

In particular, you can contact Thomas Palfinger for questions on public and patient involvement in research, Christiane Grill for questions on innOsci – Future Skills for Openness, and Laura Soyer for quadruple helix collaborations.