More resources and links on Patient & Stakeholder Engagement
Here we present documents and tools for the planning, implementing and evaluating of patient and stakeholder engagement in health research.
Tools for Stakeholder Engagement in health research
Cochrane (accessed on Nov. 20, 2019): 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.
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
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
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.
INVOLVE (2012). Briefing notes for researchers: public involvement in NHS, public health and social care research. Eastleigh: INVOLVE.
The briefing notes “are for researchers new to public involvement in research and just starting to consider how best to involve members of the public in their work”. They are intended to help to plan, resource and support public involvement in their research work. INVOLVE also provides an extensive collection of resources on public involvement.
Hickey, G., Brearley, S., Coldham, T., Denegri, S., Green, G., Staniszewska, S., Tembo, D., Torok, K., and Turner, K. (2018). Guidance on co-producing a research project. Southampton: INVOLVE.
About the organisation: “INVOLVE was established in 1996 and is part of, and funded by, the National Institute for Health Research [NIHR, UK], to support active public involvement in NHS, public health and social care research. It is one of the few government funded programmes of its kind in the world.” The NIHR also published “National Standards for Public Involvement”.
James Lind Alliance (2018). The James Lind Alliance Guidebook.
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.
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.
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)
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.
About the organisation: PFMD “aims to transform the way in which we understand, engage, and partner with patients globally in the design and development of research and medicines by focusing on unmet patient needs. We are bringing together and synergizing disparate but complementary efforts that integrate the voice of the PATIENT across the lifecycle of medicine. PFMD was established in October 2015 as an open, independent global coalition of health stakeholders.“ (partners)
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.
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.