This study is part of a larger study that was conducted to compare the methods of individual interviews and GCM for engaging patients to identify patient-important outcomes related to seeking care [9]. For this study, we report findings from direct research team observations of participant involvement during the GCM sessions, as well as results from a telephone-administered patient survey administered after completion of GCM activities. The entire study was conducted in close collaboration with our Patient Advocate and Key Stakeholders Advisory Board (PAKSAB). The study received institutional IRB approval [9, 10].
Study setting and participants
We recruited adult, English-speaking patients with a history of type 1 or 2 DM from a large urban academic healthcare system in Philadelphia (USA). Patients were eligible to participate if, within the past 3 months, they 1) had presented to the emergency department (ED) with a DM-related problem (acute), 2) were admitted to the hospital for a DM-related problem (post-acute), or 3) had a primary care visit and had 2 or more HbA1c labs > 7.5% in the prior year (primary care). Patients were excluded if they had a new diagnosis of DM, had significant complications related to DM (end stage renal disease, amputation, or blindness), were undergoing medical clearance for a detox center, were in police custody, had major communication barriers (visual or hearing impairment or dementia), or were determined unable to provide informed consent.
We convened three distinct GCM iterations, each of which included a mix of patients representing each of the three care settings. Participants were recruited from these three distinct periods on the care continuum to allow for capturing any potential variation in patient goals and preferences related to current health status. Patients were identified from the electronic medical record and were contacted by telephone in a random order for screening to assess interest in participation. We recruited for a target participation of 16–20 patients in each GCM iteration. Final participation ranged from 14 to 24 in each group. Written informed consent was obtained prior to the start of any GCM activities.
Each GCM iteration was scheduled to begin on a Saturday and had three in-person sessions: brainstorming, sorting and rating, and idea refinement. We collected demographic and patient-reported clinical information with a survey before initiation of GCM activities. Brainstorming occurred in the morning and lasted approximately 90 min. We used the following prompt, developed by our PAKSAB, for brainstorming: “You’re here as a person with diabetes; when people with diabetes seek care, what are they hoping to improve or make happen?” Participants were invited to write down responses for several minutes, then shared ideas verbally. The research team recorded all responses on a list at the front of the room; participants were encouraged to continue providing responses until the group felt that no new ideas were emerging. Similar ideas were then combined to produce the final list of patient-important outcomes.
The sorting and rating tasks occurred after a lunch break and took between 45 and 140 min. Upon returning from lunch, each participant sat at a computer with the brainstormed statements loaded into Concept Systems Global Software [2]. The research team provided an overview of the sorting and rating tasks and a demonstration of the software. Participants were instructed to individually sort the brainstormed statements into piles based on perceived similarity by dragging and dropping statements into piles in the software. Once the statements were sorted, they named each of their piles. For the rating activity, participants each read and rated every brainstormed statement on importance and achievability: “How important is this goal to you personally when thinking about your diabetes care?” (1 = “not at all important” to 5 = “very important”) and “How achievable is this goal for you personally?” (1 = “not at all achievable” to 5 = “very achievable”). The final session (idea refinement) took place the following Monday evening. In this session, participants reviewed and refined the draft concept maps and named the final clusters as a group. This session took two to two-and-a-half hours. Concept mapping participants were compensated $125 for completing all three sessions associated with a single GCM iteration.
To assess participant challenges and experiences with GCM, we recorded the research team’s real-time observations during the sorting and rating phase of GCM (step 2). Sorting and rating is the only part of the process that is done individually, and thus the only time that input from and computer use by each participant is required. We tracked the frequency of requests to the research team for assistance from the participants and the types of assistance provided. Assistance requests were categorized as brief questions regarding software use, conceptual difficulties with the sorting and/or rating, computer literacy (difficulty with using the software, keyboard, or mouse), visual impairment, and literacy challenges. Brief questions were resolved quickly with research staff (less than 1–2 min) and extended assistance was recorded when participants required help from staff for most or all of the sorting and rating phases.
To gain patient perspectives regarding their experiences and challenges participating in GCM, we also developed a 17-question survey (referred to in the following as the “engagement survey”) that included questions about overall patient experience with GCM, comfort with various steps in the process, and suggestions for improvement. The survey format employed 16 questions with defined Likert scales, two of which had open-ended follow-up questions. Additionally, the final survey question was open-ended (“Is there anything else you think would be helpful for us to know?”). Whenever possible, Likert-scale questions used balanced wording (e.g., “How easy or hard was it to …”). For all Likert items, equal numbers of negative and positive response options were provided to avoid bias. After the last GCM session, we administered the survey to GCM participants via telephone and, as a result, the time between GCM participation and survey completion ranged from 1.5 weeks to 3 months. We analyzed patient responses to 13 questions specifically related to the patient experience with GCM. The survey study received approval from the Thomas Jefferson University Institutional Review Board.
Data analysis
Descriptive statistics were calculated for survey participants (and non-participants) characteristics including ranges for relevant variables. Categorical counts of research team interactions with GCM participants were reported with a breakdown of types of assistance provided.