Background: Patient health data are used by an ever-expanding variety of stakeholders (e.g., health systems, payers, industry) to support healthcare decision making and generate evidence of patient preferences, behaviors, and comparative effectiveness. This proposal is based on the premise that a lack of knowledge prevents many patients from appreciating how their health data benefit the healthcare system and/or their own care decision making. Even patients who are engaged in research may struggle to understand what information is collected about them and their health condition, who uses and shares that information, and for what purpose.
Proposed Solution/Objectives: This proposal begins with activities to understand patients’ baseline knowledge about what health data is, who collects and uses it, and what barriers—technical, cognitive, emotional, behavioral, practical—deter patients from accessing it and harnessing it. With this enhanced understanding of the problem, the team will employ a user-centered design (UCD) process to visualize possible solutions and develop and refine a prototype for a patient-centered educational tool to address knowledge gaps. User testing and evaluation will narrow the design concepts, inform possible future steps of tool development, and identify other interventions that might be needed to achieve greater patient activation. The deliverables of the project will be made publicly available and publicized widely so they have broad impact beyond this project.
Activities: The team proposes three project phases: 1) gather information from patients and other stakeholders about what and how health data are collected and used in decision making and use the results to develop patient profiles related to their health data awareness; 2) develop a set of design principles, generate and refine design concepts, and create a working prototype for an educational tool; 3) conduct user testing and evaluation of the educational tool prototype to further refine it and guide next steps. In all three phases, the project will generate knowledge about patient needs and interests regarding their “personal health data awareness” that can be applied to other projects and initiatives.
Outcomes and Outputs (projected):
- Phase 1: Disseminate results from surveys with patients and interviews with stakeholders about what they consider health data, what they know about how they are collected and used (or not) for decision making.
- Phase 2: Develop a prototype of a patient-centered education tool, co-created with the advisory panel, individual patients, and a UCD firm. Publicize findings of the patient-user personal health data awareness profiles.
- Phase 3: Generate user feedback on a tool prototype to guide further refinement as well as information applicable to future activities to enhance patient engagement with their personal health data.
Patient and Stakeholder Engagement Plan/Project Collaborators: FasterCures will convene an advisory panel comprised of key opinion leaders from organizations with substantive patient engagement efforts. The advisory panel will contribute to: 1) development of and fielding surveys and interviews and interpretation of their results, 2) design concepts for the educational tool and identifying individual patients to provide feedback on the content and designs, 3) interpretation of the user testing of the tool prototype and next steps beyond the contract period.