More resources and tools on Patient & Stakeholder Engagement
Here we present documents and tools for the planning, implementing and evaluating of patient and stakeholder engagement in health research.
COVID-19: Patient & Stakeholder Engagement resources
We provide information on studies and initiatives that deal with COVID-19 and Patient & Stakeholder Engagement. In addition, we show opportunities how Patient & Stakeholder Engagement can be realized in the current situation.
Tools for Stakeholder Engagement in health research
Cochrane (accessed on July 16, 2021): Dissemination Essentials: The Checklist.
This checklist can help researchers to improve the communication of their finding to non-experts. It was primarily created to support researchers in presenting review findings. The full guidance document is accessible here.
Cochrane also published a Statement of Principles for Consumer Involvement.
COMET (Core Outcome Measures in Effectiveness Trials) Initiative
The COMET Initiative was founded in 2010 to bring together researchers and other stakeholders who are interested in the development and application of agreed standardized sets of outcomes (“Core Outcome Sets”, COS) which – as a minimum – should be measured and reported in all clinical trials. To ensure patient relevance it is recommended to include patients and other relevant stakeholders in the development of COS.
A comprehensive guideline on the development, implementation, evaluation and updating of COS has been published:
Williamson, P.R., Altman, D.G., Bagley, H. et al. (2018). The COMET Handbook: version 1.0. Trials, 18, 280. doi:10.1186/s13063-017-1978-4
More resources are accessible here.
This article focuses on the involvement of patients in the development of COS:
Young, B. & Bagley, H. (2016). Including patients in core outcome set development: issues to consider based on three workshops with around 100 international delegates. Research Involvement and Engagement, 2, 25. doi:10.1186/s40900-016-0039-6
Standards for reporting on COS studies can be found here:
Kirkham, J.J., Gorst, S., Altman, D.G., Blazeby, J.M., Clarke, M., et al. (2016). Core Outcome Set–STAndards for Reporting: The COS-STAR Statement. PLOS Medicine 13(10): e1002148. doi: 10.1371/journal.pmed.1002148
Crohn’s & Colitis UK (accessed on Nov. 4, 2019): Toolkit for Healthcare Professionals.
This toolkit presents different methods of patient engagement in health care. Although it was originally not created for health research, it provides a good overview on various methods – from questionnaires to co-production – of patient engagement.
About the organisation: Crohn’s & Colitis UK is “the leading patient charity for Crohn’s Disease and Ulcerative Colitis” in the UK. The organisation was founded in 1979, and focuses on the improvement of lives of people with Crohn's Disease, Ulcerative Colitis, and other kinds of Inflammatory Bowel Disease.
GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research (2017)
"GRIPP2 (short form and long form) is the first international guidance for reporting of patient and public involvement in health and social care research. This paper describes the development of the GRIPP2 reporting checklists, which aim to improve the quality, transparency, and consistency of the international patient and public involvement (PPI) evidence base, to ensure that PPI practice is based on the best evidence."
Full reference: Staniszewska, S., Brett, J., Simera, I., Seers, K., Mockford, C., Goodlad, S. et al. (2017). GRIPP2 reporting checklists: tools to improve reporting of patient and public involvement in research. BMJ 358:j3453. doi:10.1136/bmj.j3453
INVOLVE & NHS (2009). Patient and public involvement in research and research ethics committee review. Eastleigh: INVOLVE.
“This statement has been developed by the National Research Ethics Service (NRES) and INVOLVE to provide clarity and guidance on patient and public involvement in research and the requirements of research ethics review.”
James Lind Alliance (2021). The James Lind Alliance Guidebook, Version 10.
The guidebook explains how to set up and manage “Priority Setting Partnerships” (PSP) to identify the most important unanswered research questions for a specific disease or condition from the perspective of patients, their carers and clinicians.
About the organisation: The James Lind Alliance wants “to raise awareness of research questions which are of direct relevance and potential benefit to patients and the clinicians who treat them.” For this purpose, the alliance brings patients, careers and clinicians together in PSP.
Jilani, H., Rathjen, K.I., Schilling, I., Herbon, C., Scharpenberg, M., Brannath, W. & Gerhardus, A. (2020). Handreichung zur Patient*innenbeteiligung an klinischer Forschung, Version 1.0, Universität Bremen.
Diese Handreichung wurde entwickelt, um die Patient*innenbeteiligung an klinischen Studien im deutschsprachigen Raum zu stärken und Forschende bei der aktiven Beteiligung von Patient*innen zu unterstützen. Unter Beteiligung wird die aktive Einbindung von Patient*innen in die Planung, Durchführung und Translation klinischer Studien verstanden. Die Handreichung richtet sich an klinisch Forschende, die an einer aktiven Patient*innenbeteiligung interessiert sind und diese umsetzen möchten.
Ludwig Boltzmann Gesellschaft (2019). A “How To” Guide for Researchers. Patient and Public Involvement and Engagement in Research.
People working in research are the target audience for this guideline. It is intended to give background information and practical support to researchers who want to include meaningful patient and public engagement in their research. A German translation of the “How To” guide is available here.
About the organisation: “The Ludwig Boltzmann Gesellschaft (LBG) is a non-profit research organization that covers a variety of different fields (medicine, life sciences, humanities, social sciences, and cultural sciences) and specifically targets innovative research topics in Austria. Together with partners from academic and applied research, the LBG is currently running 19 research units and develops and tests new forms of collaboration between science and society (LBG Open Innovation in Science Center).” (p. 9)
National Institute for Health Research (NIHR) ARC West and People in Health West of England (2020). A map of resources for co-producing research in health and social care.
About the document: “This document provides a map of practical resources that can help when co-producing research in health and social care. […] It is not a review of academic papers, nor is it a comprehensive or exhaustive guide to co-production. It provides a selection of resources, toolkits and guidance to help you through the process of thinking about what co-production means in your project. It contains practical information and links which our team and the people who worked with us thought could be useful. We chose resources that seemed helpful for the kind of research we do.” (p.3)
This up-to-date document also contains a chapter on “Remote co-production during (and beyond) Covid-19 pandemic” addressing the issue that physical meetings with research partners cannot take place at the moment.
About the organisation: The NIHR Applied Research Collaboration (ARC) West conducts applied health research with partners from the health and care sector, alongside patients and members of the public.
Parkinson’s UK et al. (2020). A practical guide to patient and public involvement in lab-based research (Website).
“This website offers practical guidance about how to involve patients and the public in laboratory based research. A lot of guidance has been written about how to actively involve patients and the public in clinical research, and evidence is growing about the value of this. But there’s very little that is specifically aimed at researchers who work mainly in a laboratory, with very little or no contact with people affected by the condition they are studying.”
Patient Focused Medicines Development (PFMD) (2018): Patient Engagement Quality Guidance.
Different stakeholders created this tool for patient advocates, clinical investigators, researchers, or sponsors to plan or assess patient engagement activities in research or medicines development. They also published a short checklist of “DOs” and “DON’Ts” in patient engagement. The complete patient engagement framework is available here.
About the organisation: “PFMD’s goal is to improve global health by co-designing the future of healthcare for patients WITH patients. Its mission is to bring together initiatives and best practices that integrate the voice of the patient thereby speeding up the creation and implementation of an effective, globally standardized framework – that involves patients as partners – as well as the necessary tools, services and support to allow the adoption of the framework by various stakeholders.” PFMD was established in 2015, and it includes now (2021) 35 partners (patient organizations, industry, regulators, hospitals and others).
Patient-Centered Outcomes Research Institute (PCORI) (2016). Engagement Rubric for Applicants.
This document is intended to provide guidance on how to include input from patients and other relevant stakeholders into the entire health research process.
PCORI also provides an extensive engagement tool and resource repository for patient-centered outcomes research and web-based learning tools for effective multi-stakeholder research teams.
About the organisation: PCORI funds research that focuses on outcomes important to patients. They work with “healthcare stakeholders to identify critical research questions and answer them through comparative clinical effectiveness research”. The results can help patients and their caregivers make better-informed healthcare decisions.