Good research starts with setting good priorities and decades of examples prove that patients and caregivers can help in that process. Research priorities are selected for a variety of reasons. Some institutions, funders, and even researchers may have their own biases and assumptions that influence what they believe is important to study. Other researchers may decide based solely on literature review, which is inevitably separated from reality. Researchers may also focus on areas that they think will get them more funding, a result of funding biases discussed above. For these and other reasons – including “commercial, political and academic interests” – there is often a mismatch between priorities set by researchers and what matters to patients and caregivers, a mismatch that can lead to research waste.23 By including patients and caregivers though, better priorities can be pursued which may also improve relevancy.
a. Understanding What is Important to Patients and Caregivers
“An efficient system of research,” according to Chalmers & Glasziou, “should address health problems of importance to populations and the interventions and outcomes considered important by patients and clinicians.”24 Inviting patients and caregivers to discuss what priorities matter to them can call attention to incorrect assumptions.25 They can also help refocus research toward areas that may have gone ignored but would greatly impact patients’ and caregivers’ lives. For instance, much research focuses on treatment to the exclusion of “burdens associated with living with the disease and coping with treatment.”16 Furthermore, as Chalmers et al. write, “researchers often do not assess the effects of interventions in terms of functional, social, and emotional wellbeing, or adverse reactions and long-term outcomes,” and their clinical trials may have “little relevance in real-world settings.”23 The result is a continued mismatch between patient and caregiver priorities.
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.”23 Additionally, patients and caregivers can help “identify a wider set of topics”12, suggest “ideas for new research areas”12, and address “a broader range of relevant research themes”26, while “helping to reshape and clarify the research.”12
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). 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.”17 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.”17
Similar to the OMERACT example, Corner et al. 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.”22 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.” And furthermore, they 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.
Boote et al. wrote a reflective case study where researchers completely abandoned an idea after hearing from patients and caregivers.27 The initial research idea was to have patients and caregivers as part of the NIHR Stroke Research Network 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.27 As a result, Boote suggests 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.”27
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. This may reduce research waste and affect implementation, both discussed below.
b. James Lind Alliance
The James Lind Alliance (JLA) is the leader in involving patients and caregivers in priority setting. 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.”3
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.”3 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.
The Research Loop will work as an adjunct to endeavors like JLA, also recognizing the importance of including the patient and caregiver voice in setting priorities. While not all patients and caregivers can serve on PSPs, their feedback can still be useful to researchers in the priority setting phase. Using the web-application, patients and caregivers submit feedback to help researchers identify focus areas, including areas that are under-researched or ignored. 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 ask the researcher to retrospectively confirm their decisions which may improve future decisions or validate the researchers’ decisions, confirming their future endeavors.
c. Systematic Reviews in Priority Setting
According to Moher et al., “Over 50%f studies are designed without reference to systematic reviews of existing evidence.”28 In other words, researchers are unaware of work that may already be out there on a topic. Systematic reviews are important because, as Glasziou & Chalmers noted, “unidentified studies can help to inform decisions about whether further research is needed, which questions are unanswered, and how additional research can be designed to take account of the lessons from relevant previous research.”29 Patients and caregivers can help with systematic reviews.
In Corner et al.’s study with cancer patients described above, the authors explain that “patients are well aware of the significant activity underway in research into new cancer treatments.” 22 So too are patients and caregivers across the healthcare spectrum. Patients and caregivers who are actively engaged in research may have read and studied much of the existing work on a topic and be a resource to researchers, informing them of what has already been done or what is not being done. This information can help researchers set better priorities and reduce waste.
Through the platform provided by The Research Loop, patients and caregivers can identify where the research they read falls in line with other research they have encountered. They might note in feedback that a similar study was done and ask the researcher if they knew about it or whether those research ideas would be considered in tandem in the future.
The Research Loop gives patients and caregivers a platform where they can provide feedback including comments relating to research that has already been conducted. For example, in one research study a researcher chose to outline new subtypes of a disorder. A patient with that disorder wrote back to the researcher asking why she did not validate or expand upon existing subtypes outlined in previous research. Once this feedback was provided to the researcher, the researcher noted that these ideas ran “somewhat parallel and that it might be “a good thing if all these findings would be bundled” in the future. In this case, the patient was able to provide a systematic review of the information out there to inform future endeavors the researcher may consider.
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