Patients are often minimally engaged about their priorities or needs when seeking medical care, leading to treatment plans that may not be optimally designed to meet those needs. For example, patients may care more about their ability to participate in family events, while clinicians or investigators may be more interested in preventing hard medical outcomes and avoiding hospital readmissions. PCORI addresses this disconnect by encouraging the use of patient-centered outcomes for use in research; however, there is currently limited evidence for how best to identify what these patient-centered outcomes should be. One-on-one interviews and focus groups are most often used to engage patients. While these methods provide valuable information, they are often time consuming and may leave the final process of analyzing data and identifying outcomes in the hands of researchers instead of patients. Thus, patient-centered researchers would benefit from the development of additional methods for identifying individual patient-important outcomes.
We suggest that concept mapping—a method for participant engagement commonly used in nonhealthcare research settings—may be one such efficient and effective method. Concept mapping is a group process that takes place over multiple sessions in which participants: 1) brainstorm ideas, 2) organize ideas, and 3) analyze ideas to generate a final list of “outcome clusters.” In this proposal, we plan to test concept mapping and one-on-one interviews as two methods to elicit patient-important outcomes for management of diabetes mellitus. We will assess the comprehensiveness of the outcomes produced by each of the two methods and will then look at the efficiency of performing both methods (primarily an assessment of the time required from both patients and investigators). We will test our aims by engaging a population of patients with moderately to poorly controlled diabetes, as this is a population that has been identified by our institution as well as multiple national healthcare groups as having an especially high burden of disease. We are performing all of our work in close collaboration with our Patient and Key Stakeholder Advisory Board (PAKSAB), whose members are equal partners with the research team and have been involved with the proposal from inception. PAKSAB members will also conduct the aims and assist with all analysis and data interpretation. This work is patient-centered in the process as well as in the outcomes, engaging patient partners in the advisory board and research team, and patient participants in all data collection, and generating a list of patient-important outcomes for patients with diabetes in managing their chronic disease(s).