“Am I OK?” using human centered design to empower rheumatoid arthritis patients through patient reported outcomes
Open accessAbstract
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.
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Methods for Human-Centered eHealth Development: Narrative Scoping Review
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- Authors
- Ragouzeos, D., Gandrup, J., Berrean, B., Li, J., Murphy, M., Trupin, L., Yazdany, J., & Schmajuk, G.
- Affiliations
- University of California, San Francisco (US)
- San Francisco VA Medical Center (US)
- Corresponding author
- Schmajuk, Gabriela
- Venue
- Patient Education and Counseling
- Publisher
- Elsevier BV
- Published
- 2019-03
- Volume
- 102
- Issue
- 3
- Pages
- 503-510
- ISSN
- 0738-3991 (ISSN-L)
- PMC
- PMC6421089
- OpenAlex
- W2898536708
- Cited by
- 40
- References
- 25
- Citations by year
- 2026: 2 · 2025: 2 · 2024: 6 · 2023: 1 · 2022: 12 · 2021: 6 · 2020: 8 · 2019: 3
- FWCI
- 3.62
- Type
- journal article
- Language
- en
- Open access
- green
- www.ncbi.nlm.nih.gov
- Locations
- Patient Education and Counseling (publishedVersion)
- PubMed (publishedVersion)
- Europe PMC (PubMed Central) (acceptedVersion)
- PubMed Central (acceptedVersion)
- eScholarship (California Digital Library) (submittedVersion)
- Research Explorer (The University of Manchester) (submittedVersion)
- Funders
- Pfizer (20827665)
- National Institute of Arthritis Musculoskeletal and Skin Disease at the National Institutes of Health (P30 AR070155)
- Topics
- Health Sciences › Medicine › Rheumatology › Rheumatoid Arthritis Research and Therapies
- Health Sciences › Health Professions › Health Information Management › Electronic Health Records Systems
- Health Sciences › Health Professions › General Health Professions › Mobile Health and mHealth Applications
- Keywords
- rheumatoid arthritis, patient-reported outcomes, human-centered design, shared decision-making, patient-provider communication, patient empowerment, health information technology, well-being assessment, personalized treatment planning, safety-net hospitals
- MeSH terms
- Clinical Decision-Making, Patient Reported Outcome Measures, Adult, Aged, Arthritis, Rheumatoid, Communication, Decision Making, Female, Humans, Interviews as Topic, Male, Middle Aged, Patient Participation, Patients, Professional-Patient Relations, Quality of Life, Focus Groups, Patient-Centered Care, Qualitative Research, Health Literacy
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