Good research starts with setting good priorities and almost two decades of examples prove that patients and caregivers can help in that process.  There is often a mismatch between priorities set by researchers and what matters to patients and caregivers.  But by including them, patients and caregivers can play a key role in identifying which research questions may be most important and relevant for researchers to pursue. 
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Understanding What is Important to Patients and Caregivers

“An efficient system of research,” according to experts, “should address health problems of importance to populations and the interventions and outcomes considered important by patients and clinicians.”1  Inviting patients and caregivers to discuss what priorities matter to them can help refocus research toward areas that may have gone ignored but would greatly impact patients’ and caregivers’ lives.  For instance, a lot of research focuses on treatment to the exclusion of “burdens associated with living with the disease and coping with treatment.”2, do not focus on “the effects of interventions in terms of functional, social, and emotional wellbeing, or adverse reactions and long-term outcomes,” and may have “little relevance in real-world settings.”3

Recognizing that quality of life can be as important as treatment is essential to developing research, particularly which research outcomes to pursue.  By including patients and caregivers, researchers can reduce “some of the mismatches between research agendas and the needs of the users of research.”3 Additionally, patients and caregivers can help “identify a wider set of topics”4, suggest “ideas for new research areas”4, and address “a broader range of relevant research themes”5, while “helping to reshape and clarify the research.”4

A great example of the impact patients and caregivers can have on priority setting can be found in the work OMERACT (Outcome Measures in Rheumatology) underwent with “patient research partners” (PRPs).  In 2000, OMERACT consulted with patients on priority setting to discuss meaningful outcome measures for rheumatology.  Their PRPs identified fatigue as a priority, noting that “fatigue affects everyday life.”6  While it was not part of the core outcome set before the consultation, once researchers recognized the impact it had, OMERACT decided fatigue was of such importance that it “now endorses fatigue as a necessary assessment in all [rheumatoid arthritis] trials.”6

Similar to OMERACT, in 2007 a UK researcher conducted a study inviting cancer patients to take part in consultation groups on priorities in research.  They found that patients identified “practical, social and emotional issues as a higher priority” than “biological and treatment related aspects.”7  They felt that their study highlighted that “As the beneficiaries of discoveries and developments in cancer science, it cannot be assumed that [patient] views will automatically accord with those of the scientific community.”7  They also concluded “patients with cancer, regardless of their personal situation have clear views as to the most important priorities for research investment. Their highest ranked concerns are not currently being addressed.”7

In 2012, another researcher wrote a reflective case study where researchers completely abandoned an idea after hearing from patients and caregivers.8 The initial research idea was to have patients and caregivers help design a consent form.  This form would then be compared to one similarly developed by researchers.  The researcher pursuing this idea thought they had identified an important gap in the literature.  Only after consulting patients and caregivers did they realize the idea, though it had approval from other researchers, would not actually provide the benefit intended.8 The outcome of this case study was realizing that inviting patients and caregivers to discuss an idea can help “lessen the time that researchers spend developing research ideas of little interest to the public.”8

Currently, the James Lind Alliance (JLA) is the leader in involving patients and caregivers in priority setting in the UK.  Established in 2004 as part of the UK’s NIHR, the JLA recognizes,

“Research on the effects of treatments often overlooks the shared interests of patients, carers and clinicians. As a result, questions that they all consider important are not addressed and many areas of potentially important research are therefore neglected.”9

In this spirit, JLA has worked to establish Priority Setting Partnerships (PSPs) which bring together “clinicians, patients and carers to work together to identify and prioritise uncertainties about the effects of treatments that could be answered by research.”9 These PSPs span many different diagnoses and produce lists of “Top 10” priorities for researchers to pursue. The priorities chosen thus influence funding opportunities and, more importantly, the potential impact of research.

How The Research Loop Helps with Priority Setting

The Research Loop will work as an adjunct to endeavors like those above, recognizing the importance of including the patient and caregiver voice in setting priorities.  While not all patients and caregivers can serve on PSPs or may not be asked to comment on current research, their feedback after research publication can still be useful to researchers in the priority setting phase. 

By giving patients and caregivers the opportunity to provide feedback, The Research Loop helps researchers see if their work is in line with priorities that matter to patients and caregivers.  Patients and caregivers can simply relay whether the research was meaningful to them or not and why.  This can give researchers a sense of whether they have chosen the right priorities or if they need to consider new directions.  For example, a patient may read an article and reply to the researcher, “Why did you choose this topic?  Did you consider looking at this area?”  or simply, “I think this research is great and very important.”  Even this simple feedback can offer researchers a wealth of information that can encourage the researcher to retrospectively confirm their decisions and this reflection may improve future decisions or validate the researchers’ decisions, confirming their future endeavors. 

Help Set Priorities!

If you want to provide feedback 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 in setting good research priorities!


For more on why patients and caregivers should have a way to engage in research virtually including the concepts discussed above, see our White Paper, Section IV.

References:

  1. Chalmers I, Glasziou P. Avoidable waste in the production and reporting of research evidence. The Lancet. 2009;374(9683):86–9.
  2. Tong A, Crowe S, Chando S, Cass A, Chadban SJ, Chapman JR, et al. Research Priorities in CKD: Report of a National Workshop Conducted in Australia. American Journal of Kidney Diseases. 2015;66(2):212–22.
  3. 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.
  4. Briefing notes for researchers: public involvement in NHS, public health and social care research. INVOLVE: Eastleigh; 2012.
  5. Allard J, Durand C, Anthony SJ, Dumez V, Hartell D, Hébert M-J, et al. Perspectives of Patients, Caregivers and Researchers on Research Priorities in Donation and Transplantation in Canada. Transplantation Direct. 2017.
  6. Kirwan JR, Wit MD, Frank L, Haywood KL, Salek S, Brace-Mcdonnell S, et al. Emerging Guidelines for Patient Engagement in Research. Value in Health. 2017;20(3):481–6.
  7. 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.
  8. Boote JD, Dalgleish M, Freeman J, Jones Z, Miles M, Rodgers H. ‘But is it a question worth asking?’ A reflective case study describing how public involvement can lead to researchers’ ideas being abandoned. Health Expectations. 2012;17(3):440–51.
  9. James Lind Alliance. Available from: http://www.jla.nihr.ac.uk/