PE-2: The Value of Public and Patient Involvement in Health Research

By Carolyn Shimmin

Origins of the Movement

Public and patient involvement in health research grew out of a sense of democratic purpose — that people who are affected by research have a right to have a say in what and how publicly funded research is carried out.

One example of this was the HIV/AIDS movement in the 1980s. To address the epidemic that was taking so many innocent lives, people living with the health condition (as well as informal caregivers and communities affected) began working with researchers to identify pressing research priorities. There are also examples from the disability movement, which coined the phrase ‘Nothing about us without us’. And, of course, Indigenous methodologies have always foregrounded the importance of involving communities in the act of knowledge production and exchange.

Evolving Goals of Public and Patient Engagement

When framed through a democratic lens, patient and public involvement is an upstream endeavour driven by the desire for social justice and health equity. It gives people, informal caregivers, and communities with lived experience of health conditions an equal say in decisions around research processes.

However, over time, the underlying goals of patient and public engagement in health research have shifted to a considerably more downstream focus that gives research top billing. Firstly, there was a move towards the idea of better health decision-making (i.e. the notion that involving patients, informal caregivers, and the public will increase their understanding of health research which, in turn, will strengthen their ability to make good health decisions for themselves and their families). A subsequent shift positioned public involvement as a means of enhancing research (i.e. by involving patients, informal caregivers, and communities in health research, we stand to improve the quality, transparency, relevance and accountability of research).

For me, the principles of democracy, social justice and health equity are at the core of why we need to involve people and communities with lived experience — especially if our aim is to facilitate meaningful social change. This upstream approach also speaks to the democratic principles of accountability and transparency in research. But I recognize that in the world of health research, the reasons for why we involve patients and the public are varied, complex and not without merit. As mentioned above, enhancing research quality and relevance are sensible aims as well.

Why should we involve people with lived experience in research?

• To help identify research priorities that matter most to people living with the health condition being researched
• To help shape and clarify research questions so they reflect the needs and concerns of patients and informal caregivers
• To help ensure the methods proposed for the study are appropriate, acceptable and sensitive to the very real context in which patients and informal caregivers live, work and play
• To help ensure research uses outcomes that have true meaning to the lives of patients, informal caregivers and communities
• To help ensure that the language and content of the information provided to participants in studies is appropriate and accessible (e.g. questionnaires and patient/participant leaflets)
• To help increase participation in a research study by: making sure the research is appropriate and acceptable to potential participants; improving the information provided so people can make informed choices; and helping to include voices that are traditionally less heard in research
• To identify a wider set of research topics or new areas of research
• To interpret research findings from the perspective of people with lived experience and informing recommendations that will help improve the lives of patients and caregivers
• To help ensure research reflects the concerns, interests and values of the public and that money and resources are used efficiently

What are some other reasons why you think it is important to involve patients and/or the public in health research?

This is the second in a series of posts by Carolyn specifically addressing public and patient engagement. Find links to the rest of the series below:

• PE-1: What is Patient Engagement in Health Research?
• PE-3: The Levels of Public and Patient Involvement
• PE-4: Are you Ready for Patient Engagement? Assessing Expectations
• PE-5: Purpose of Engaging Patients and the Public
• PE-6: What Influences Someone’s Motivation to Get Involved in Health Research?
• PE-7: How do I Find People to Involve in My Health Research?
• PE-8: Five Point Checklist When Planning for Patient Engagement

About the Author

Carolyn Shimmin (@CarolynShimmin) is the Public and Patient Engagement Lead at the George & Fay Yee Centre for Healthcare Innovation (CHI). Her experience includes stakeholder engagement, research, writing and reporting on various health policy issues including mental health, addictions, trauma and the sexual exploitation of children and youth. Areas of interest include patient engagement, lived experience research, knowledge translation, trauma-informed approaches, intersectional analysis, and poststructuralist queer theory.