In our daily lives, we generate a trail of personal data. Dr. Andrea Hartzler is making sure we have a say in how our data are used.

by Andrea Hartzler, PhD, Group Health Research Institute assistant investigator

Are you one of the millions of people who track their steps with a Fitbit or other activity tracker? Do you use a smartphone app to improve your sleep habits or keep a food diary to count calories? The numbers you record are what health information technology experts call patient-generated health data (PGHD).

PGHD refers to :

• health history,
• symptoms,
• biometric data,
• treatments,
• lifestyle choices, and
• other information patients capture about their health.

PGHD can help us stay healthy and I’m excited about that prospect. But I also think we need to be thoughtful about how we share and use PGHD. That’s why, in my research, I ask people about their attitudes, perspectives, and preferences about their health data and other personal information.

I recently was invited to provide the federal Office of the National Coordinator (ONC) for Health Information Technology with input on best practices, gaps, and opportunities for PGHD in research and care delivery. The ONC staff members are talking with people like me who study the rapidly developing and ever-changing world of personal digital data. The ONC will use this expert input to draft national policy about securely using PGHD in ways that benefit health care providers and patients. This long-term policy solution could guide the use of PGHD with electronic health records and the Precision Medicine Initiative.

I told the ONC about my “Big Consumer Data” study with my Group Health Research Institute (GHRI) collaborators Evette Ludman, PhD, and James Ralston, MD, MPH, funded by the GHRI Development Fund. In this pilot study, we asked volunteers in focus groups to talk about their preferences for sharing their “personal data trail,” which includes PGHD, to improve health and health care. We had lively discussions around some provocative points.

Benefits and concerns about patient-generated data

Like many people, including me, many of our focus group participants said they use step-counting apps and wearable devices to spur them to move more. They also rely on online maps for directions, keep in touch with friends using social media, and make purchases with credit cards. In the focus groups, we all agreed that these technologies have their advantages. However, concerns about security, privacy, and control over our own data arose when we discussed how it might be shared and used.

People are understandably cautious about sharing health information that might affect how they are treated by their health care providers, employers, or insurers. Many people are also sensitive about sharing their shopping habits, which might be recorded by credit, debit, and loyalty cards. In fact, one of the topics I discussed with focus groups and the ONC was use of consumer data in health and health care analytics. This does not happen where I work, at Group Health, but some care systems and insurers have begun to mine these types of data in their analyses. Clearly, this is an area where we need to hear from patients and consumers about how they want their data to be used and we need to understand their preferences about being informed and providing consent.

Some points to ponder about your data

I don’t want to be alarmist—I think it’s wonderful that digital technologies give us so many opportunities to actively engage in our own health. For example, I also study online health communities that connect people with questions about an illness or condition with people who have answers because they have experienced the same situation. As a researcher, I’m grateful that so many people are open to sharing their views and values about digital data and sometimes their own PGHD for our studies.

My colleagues and I strongly feel that we must continue exploring the ethical, legal, and social implications of using PGHD.

However, my colleagues and I strongly feel that we must continue exploring the ethical, legal, and social implications of using PGHD. We want to help inform the design of technologies, as well as policies, guidelines, and best practices to make sure PGHD is used securely, accurately, and positively. We are now analyzing our findings from the focus groups so we can share them in a research publication. We hope they contribute to thoughtful use of PGHD in future research and care delivery.