Patients are increasingly involved in shaping research in health care, especially since the advent of the federal Patient-Centered Outcomes Research Institute (PCORI). PCORI actively promotes the engagement of patients and other stakeholders (clinicians, caregivers, purchasers, etc.) in the research process. As we discussed in an earlier entry on this blog, research terminology alone can be a barrier to engagement because of the confusion and differing expectations it creates. A 2011 review of 148 studies on patient and clinician engagement in research by Stewart and colleagues found that few of them (9) engaged patients and clinicians collaboratively to generate research questions. The additional time it takes to arrange in-person meetings for a collaborative group might be one reason, along with the greater difficulty of developing a process where group members can feel on equal footing to contribute.
In a recent Medical Care article, Haynes and colleagues demonstrated how patients and clinicians could be collaboratively engaged in generating and prioritizing research questions. The study was a part of the Research Action for Health Network (REACHnet). Because of their high morbidity burden [pdf], the topics of diabetes and obesity were the foci for four multi-stakeholder research advisory groups in Louisiana.
REACHnet investigators nominated researchers and clinicians to the advisory groups; patients were recruited during clinic visits and from active support groups. Patients formed more than half of each advisory group. Two groups for diabetes (made up of 12 and 16 people) and two groups for obesity (17 and 19 people) each met several times. The first meeting familiarized participants with research, terminology, an overview of REACHnet and the main principles of patient-centered outcomes research. Additional meetings used a focus group technique to allow group members to generate and prioritize research topics. Members had an opportunity to give anonymous feedback at the end of each meeting.
Participants identified themes, synthesized and revised research topics devised from those themes, and then completed a ranking activity among the top 10 topics for obesity and 12 topics for diabetes. Similar to PCORI’s standards for prioritizing patient-centered research questions, only patients took part in the ranking activity. There were a handful of topics that more than half of the respondents selected as “important,” shown in the figure below.
Nearly all of these topics fall into the spectrum of translation to practice (T3) and translation to communities (T4) research. Patient education features prominently, particularly for diabetes. Effectiveness and comparative effectiveness are highlighted as important for the obesity-related topics. Haynes and colleagues take the next step in their paper by comparing the priorities from their advisory groups to research priorities at the national level. The authors found that the finalized topics for obesity and diabetes lined up with 34 and 23 national priorities respectively. Whether those priorities are supported by funding and investigator time is still an open question. Similar efforts to engage patients in prioritizing research on other health conditions might help guide national priorities and generate scientific evidence that is more useful to patients, clinicians, and policymakers.
Jess Williams