Examining the Needs of Patient Stakeholders as Research Partners in Health Data Networks for Translational Research

• Published in: AMIA Summits on Translational Science proceedings Vol. 2019; pp. 363 - 369
• Main Authors: Stephens, Kari A, Osterhage, Katie P, Fiore-Gartland, Brittany, Lovins, Terri L, Keppel, Gina A, Kim, Katherine K
• Format: Journal Article
• Language: English
• Published: United States American Medical Informatics Association 2019
• ISSN: 2153-4063; 2153-4063

Patient stakeholders are getting increasingly involved in research health data networks, particularly as research partners. However, tools do not exist to help effectively orient, educate, and engage patient stakeholders as they take on these roles. Using a human centered design approach, we conducted a patient stakeholder needs assessment qualitative study to identify key user needs to drive design recommendations for development of an online education and engagement tool for research health data networks. We found three key needs related to multiple role identities, motivations and expectations for participation on research teams, and patient journeys. Design recommendations derived from the needs assessment are discussed that can support future tool design and testing.