Involving patients and caregivers in research means working with them as experts who actively participate as part of a multidisciplinary team at all stages of the research process.  This means that researchers need to consider how to include patients and caregivers in new roles.  Though it may seem challenging to involve patients and caregivers at a higher level of engagement, working with them while keeping the following principles in mind can truly transform research.

With Patients

a. With not For

Most research is undertaken by researchers for patients and caregivers.  A fundamental concept of including patients and caregivers is orienting researchers to understand that “Instead of undertaking research on or about patients, research is undertaken jointly with them.”1  In other words, research should be “carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.”2

By inviting patients and caregivers to work with researchers, better research priorities can be selected, higher quality research can be undertaken, and a greater impact made by the completed project.

b. As active participants

Continuing with the thought of research being done for patients and caregivers we must recognize that in the past, patients and caregivers have merely been “passive subjects” of research3, essentially only used as data points.4  However, there is increasing recognition that they should be “active partners” in research.5,6  Such active participation recognizes the value of the patient and caregiver voice, including their expertise as consultants and collaborators. It also acknowledges that involvement of patients and caregivers should not be tokenistic.  Working with patients as active participants encourages patients and caregivers to propel research forward.

c. As experts

To work with patients and caregivers, researchers must first recognize the expertise patients and caregivers have through their lived experiences within the health system and as individuals with diverse backgrounds including various forms of education (both formal and informal) and work-related experience. Given this diversity, all forms of knowledge must be respected and valued, qualifying patients and caregivers as, in the least, experiential experts.  This however “requires a recognition that knowledge is produced in arenas other than academia.”1

Traditionally “Experience-based experts have…been excluded from knowledge sharing and decision making because their knowledge has been seen as inferior to certified expertise.”7 Many researchers and institutions continue to question whether patients and caregivers without advanced certifications through formal education can truly offer much to research.  But top researchers in this area encourage their colleagues to realize that patients’ and caregivers’ “abilities should not be undervalued” and in fact “challenges such as serious mental illness or lack of resources in developing countries have not prevented [patients] from understanding research foundations, giving feedback and strengthening research.”8  In other words, all can be involved in research; even those who some may think cannot add to research have valuable input to offer.

Coordinator of the James Lind Initiative, Sir Iain Chalmers, reminds us that “No one – and certainly not researchers – can claim a monopoly of relevant wisdom in discussions about what deserves attention in health research. Lay people can draw on kinds of knowledge and perspectives that differ from those of professional researchers.”9 Thus, the lead for Public and Patient Involvement in PRIME Centre Wales, Dr. Bridie Evans points out, when involving patients and caregivers in research, “Service users should have equal status with other research team members for the expertise they bring; all team members’ views should receive equal consideration.”10

The Research Loop recognizes the power of patient and caregiver expertise and works to elevate their voices to transform the research process.  While researchers will ultimately decide whether to accept the feedback offered by patients and caregivers, The Research Loop echoes INVOLVE in urging researchers to remember: “Members of the public might have personal knowledge and experience of your research topic or be able to provide a more general perspective. Even if you are an expert in your field, your knowledge and experience will be different to the experience of someone who is using the service or living with a health condition.”11 By including all expertise in research, including patient and caregiver expertise, we can add new perspectives and perhaps even new directions in research.

d. As consultants, advisers, and collaborators

Patients and caregivers may be asked to participate at varying levels of involvement and engagement – from passive participants in research, to consultants, to collaborators, or even leading their own research initiatives.  Consulting, advising, and collaboration allow patients and caregivers to bring their expertise to the table to influence various stages of research.5  In consulting and advising, patients and caregivers might be asked through focus groups or surveys to give their views on research with differing levels of engagement from focus groups to surveys to community meetings.  As patients and caregivers are seen more as partners, collaboration through panels and joint enterprises form to address research questions.  Ideally, patients and caregivers should be collaborators with researchers, making decisions together.  Short of that, having patients and caregivers act as consultants whose input researchers look to when making decisions is of great importance.12

e. As part of multidisciplinary team

Given patients’ and caregivers’ expertise, their input can be viewed as part of engagement on a multidisciplinary team.  As Natland et al. point out, including patients and caregivers in the research process takes them “From being an object of research, the patient can now become a co-researcher in a team that jointly formulates the goals and methods of the research project.”1  An approach that they say “emphasizes interdisciplinary, collaboration and a given context.”1 This kind of collaboration is increasingly encouraged.  In fact, to increase value and reduce waste, Chalmers and colleagues say it is important to encourage researchers “to work across traditional academic boundaries can lead to creative sharing of ideas…” and recognize the importance of multidisciplinary teams.13

f. At all stages of the research process

To have the greatest impact, patients and caregivers should be involved in all stages of research including priority setting, research design, data collection, analysis, interpretation, dissemination, and implementation. Many emphasize the importance of involving patients and caregivers at the earliest stages of research development.  In that way, patients and caregivers can perhaps influence research from the start.  However, as INVOLVE states, “it’s not too late to involve people” at any stage of research.11 At The Research Loop, we believe that involving patients and caregivers can provide valuable input at all stages, even after publication when many might think it is too late.  In fact, we see it as way to close the gap between when one research endeavor ends and the next begins, thus in a way ultimately involving patients and caregivers at both the earliest and latest stages, and all those in between.

How The Research Loop Involves Patients in Research

The Research Loop believes that research should be done with patients and caregivers.  The ability to offer feedback on research allows patients and caregivers to become active in research and act as consultants, advisers, and collaborators and as adjuncts to a multidisciplinary research team.  The feedback patients and caregivers offer as experts can drive researchers to see beyond the “traditional academic boundaries” by introducing researchers to new viewpoints and help shape future research just like feedback any co-researcher developing a study.

The Research Loop supports and facilitates patient and caregiver involvement in research.  We give patients and caregivers the opportunity to impact all stages of research by providing a platform to let them comment on all aspects of research.  Additionally, through educational materials posted on the site, patients and caregivers can learn more about research and other initiatives to involve patients and caregivers in research. 

With these principles in mind, we encourage researchers to continue to involve patients and caregivers in research and we hope to empower patients and caregivers in that process!

Offer Your Expertise!

If you want to offer your expertise on research, make sure to register with The Research Loop!  Whether you’ve read research on your own, or you review one of the papers we’ve posted on our site, your feedback can make a difference!


For more on how patients’ and caregivers’ feedback can have an impact, including the concepts discussed above, see our White Paper, Section X.

References:

  1. Natland S, Tveiten S, Knutsen IR. Hvorfor skal pasienten medvirke i forskning? Tidsskrift for Den norske legeforening. 2017;137(3):210–2.Translated to English on the site:  Why should patients participate in research?
  2. Gooberman-Hill R, Burston A, Clark E, Johnson E, Nolan S, Wells V, et al. Involving Patients in Research: Considering Good Practice. Musculoskeletal Care. 2013;11(4):187–90.
  3. Corner J, Wright D, Hopkinson J, Gunaratnam Y, Mcdonald JW, Foster C. The research priorities of patients attending UK cancer treatment centres: findings from a modified nominal group study. British Journal of Cancer. 2007Jun;96(6):875–81.
  4. Domecq JP, Prutsky G, Elraiyah T, Wang Z, Nabhan M, Shippee N, et al. Patient engagement in research: a systematic review. BMC Health Services Research. 2014;14(1).
  5. McKenzie A., Haines H. Consumer and Community Participation Fact Sheet Series, Second Edition. 2014.
  6. Mckenzie A, Alpers K, Heyworth J, Phuong C, Hanley B. Consumer and community involvement in health and medical research: evaluation by online survey of Australian training workshops for researchers. Research Involvement and Engagement. 2016Sep;2(1).
  7. Uhm S, Liabo K, Stewart R, Rees R, Sandy O. Patient and public perspectives shaping scientific and medical research: panels for data, discussions, and decisions. Patient Intelligence. 2012;4:1–10.
  8. Shippee ND, Garces JPD, Lopez GJP, Wang Z, Elraiyah TA, Nabhan M, et al. Patient and service user engagement in research: a systematic review and synthesized framework. Health Expectations. 2013Mar;18(5):1151–66.
  9. Chalmers I. What do I want from health research and researchers when I am a patient? BMJ. 1995May20;310(6990):1315–8.
  10. Evans B, Bedson E, Bell P, Hutchings H, Lowes L, Rea D, et al. Involving service users in trials: developing a standard operating procedure. Trials. 2013;14.
  11. Briefing notes for researchers: public involvement in NHS, public health and social care research. INVOLVE: Eastleigh; 2012.
  12. Stewart RJ, Caird J, Oliver K, Oliver S. Patients’ and clinicians’ research priorities. Health Expectations. 2010;14(4):439–48.
  13. Chalmers I, Bracken MB, Djulbegovic B, Garattini S, Grant J, Gülmezoglu AM, et al. How to increase value and reduce waste when research priorities are set. The Lancet. 2014;383(9912):156–65.