Objective

Use of patient reported outcomes (PROs) in the routine care of rheumatoid arthritis (RA) has been shown to improve health outcomes, However, integration of PROs into the clinical visit is inconsistent. We aimed to develop a "dashboard" for RA patients to display relevant PRO measures for discussion during a routine RA clinical visit.

Methods

Patients (N = 45) and providers (N = 12) were recruited from rheumatology clinics at a university center and a safety net hospital. Using a human-centered design process involving patients, clinicians, designers, and health-IT experts, we performed interviews, clinic observations, and focus groups, which subsequently guided an iterative phase of prototype testing.

Results

RA patients and their providers shared the goals of assessing wellbeing and developing a personalized treatment plan. We found conflicting views of which data were most important for guiding decision-making and for answering the patient's overarching question of "Am I OK?"

Conclusion

The final dashboard simplified the display of PRO data and correlated it longitudinally to the patient's medication regimen. It also included laboratory values relevant for RA care.

Practice implications

By presenting data graphically, the dashboard may provide a platform for patients and providers to communicate around PROs and shared goals.

Background

Poor patient-clinician communication around patient-reported outcomes (PROs) is a barrier to the effective management of rheumatoid arthritis (RA). We aimed to develop an RA 'dashboard' that could facilitate conversations about PROs and that would be acceptable to a wide range of patients, including English and Spanish speakers and patients with adequate or limited health literacy.

Methods

A diverse group of RA patients along with clinicians from two academic rheumatology clinics joined separate focus groups. We solicited feedback and made iterative changes to mock-ups of an RA dashboard that visualized PROs using a human-centred design process. We used the thematic analysis method to identify and characterize themes from the focus groups and used these insights to refine the dashboard.

Results

We conducted six focus groups involving 25 RA patients and three groups with 11 clinicians. Patients and clinicians agreed that the dashboard could enhance communication about PROs and RA disease activity and could promote patient self-management. Patients varied in their (a) comprehension, (b) preferences for the display and features of the dashboard, and (c) desired uses for the dashboard. Clinicians expressed significant concerns about the logistics of using the dashboard in clinical practice.

Conclusion

Using principles of human-centred design, we created an RA dashboard that was well-accepted among patients and clinicians. The ability to customize the data display is important for tailoring the dashboard to patients with diverse needs and preferences. Special attention should be given to feasibility concerns voiced by clinicians.