Do you know where your health data live?
The Office of the National Coordinator for Health Information Technology estimates that 41 percent of Americans have never viewed their health data, but when they do, the majority finds the information helpful. FasterCures’ work with patient organizations in The Research Acceleration and Innovation Network (TRAIN) identified a knowledge gap between a relatively small number of highly motivated participants and the large majority of others who are not informed about the way health data is used, transmitted, and stored in the complex R&D system and often don’t know where to begin to engage with the system and learn more about their data.
There is also a gap between what people understand about the R&D system and what the system is asking them to do. The average person might feel that the health-care system collects an immense amount of information from them. So, they wonder, what more does my care team need me to do? What are they doing with the data they already have?
To help bridge the gap, FasterCures is developing a tool to help people understand what makes up their health data, how they are collected and shared, and who uses them, so they have the basic knowledge needed to use these data when making decisions about their health. This “Health Data Basics” project is funded through a $250,000 Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (#4202-MI). The work is led by our Patients Count program team that is building a science of patient input. We will draw on user-centered design principles, the expertise of Involution Studios, and an advisory panel to keep participants’ educational needs as a focal point. Surveys, in-depth interviews, and user testing with participants will inform the design and refinement of a tool that is brief, easy to access, and aligned with users’ educational needs.
We recently completed 15 discussions with key opinion leaders and analyzed survey responses from more than 700 patients and caregivers across the U.S. Despite barriers that can impede getting access to health data, most patients and caregivers report a high level of satisfaction with the health data they have obtained, which aligns with the ONC data mentioned above. The results of the information we gathered highlighted educational gaps and themes that are top priorities for our educational tool to address. The major gaps include: individuals not being able to track down who their information has been shared with, individuals being unaware of protections and security surrounding their health data, and a lack of trust of users of health data who are further from the clinical encounter (especially insurance and pharma/medical device companies). Additionally, the interviews revealed the need for a high level of “grit” or perseverance required by individuals to gain access to their health information
The interviews also highlighted a lack of consensus of what health data encompass. The health-care system is at a crossroads of transitioning from paper records to digitally capturing and presenting patient data, creating increased complexities for patients. New sources of patient-generated data are also expanding the concept of what comprises health data. We also heard about the need for greater transparency from the system to build trust with patients and evolve to a more patient-centered system with actionable insights arising from patient health data.
Our interviewees also struggled to determine where, how, and when it is appropriate to help educate patients about these issues. Addressing them at the point of care is not ideal due to clinician time constraints and the potential for patient stress or greater concern with their immediate health needs. However, accessing and organizing health data are not currently high priority or routine tasks for most individuals.