Pioneering the Use of Personal Health Data

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The Evolution of Our Approach

New technologies make it possible for patients, providers, and policymakers to access an abundance of health data that has the potential to help them make better decisions about medical care and improve health behaviors.

In the mid-2000s, the Pioneer Portfolio set out to explore the ways data and information could help people take a more active role in their health care. We discovered that people didn't necessarily need more data about their medical lives. Instead, they needed more information about how their everyday actions influence their health.

Looking Outside the Medical Context

This led to a series of projects that looked at what happens when people collect information about their day-to-day lives—data about their mood, sleep, diet, pain, and physical activity.

Project HealthDesign examined whether these "observations of daily living” can inform better understanding of people’s conditions and ultimately lead to improved treatments and health behaviors. Through Project HealthDesign, we learned how data that typically wouldn’t be available in the health care environment can start to make a difference in the care people receive and can provide important insights to health care providers. For example, there were cases in which providers changed patients' asthma diagnoses and adjusted patients' medications based on the data patients collected about themselves. 

Around the same time, the Quantified Self movement began to take hold, with more and more people using self-tracking data to improve their health. These efforts contributed to a growing mass of data generated by people in the real world, offering an alternative to data generated by the doctor’s office, medical trials or public health surveys.

Even with all these new data, some of the more traditional records remain important. OpenNotes, a Pioneer grantee, enables patients to see their doctors' visit notes and has demonstrated the importance of gaining access to your own medical records. Initiatives like the Blue Button movement have helped allow patients to download their own health data.

Exploring 'Real-World' Patient Data 

In recent years, we’ve seen an explosion of tools that help us record and share information about our day-to-day lives.

Activity-tracking devices and smartphones generate data on our movements, location and behavior, while apps help us record our moods, pain, diet, sleep, and exercise. Online patient communities, along with devices like Internet-connected scales and blood pressure cuffs, can also create valuable information.

We find ourselves with new opportunities. This “real-world” data, collected in real-time, could give researchers a new window into how people experience health in everyday life, and lead to improvements in health care and public health.

We're exploring how patient-generated data can help researchers develop health outcome measures that better reflect patients’ experiences with a disease. Using the Open Research Exchange, researchers will be able to design and test health outcome measures with real patients from PatientsLikeMe’s 200,000-member community. The measures could aid development of new treatments that better meet patients’ needs. If you’re a researcher interested in piloting the new platform, let us know.

We've also launched the Health Data Exploration project with Kevin Patrick and Jerry Sheehan at Calit2 to investigate these possibilities. We're excited about the possibilities that breaking down barriers and bridging fields could create. We're working to bring companies who collect this real-world, real-time health data together with researchers who can mine them for new insights.

Would you be willing to share the data that you or your customers track for purposes of research? What barriers prevent this type of data from being used in research? 

Learn about the evolution of RWJF Pioneer's approach to personal health data

Datapalooza Dispatches

Pioneer team members, as well as Entrepreneur in Residence Thomas Goetz, shared their experiences from Health Datapalooza, which took place June 3 and 4. Follow their conversation: 

For more perspectives, read the New Public Health blog.

RWJF & Datapalooza

RWJF is a sponsor of Health Datapalooza and the Health Data Consortium. RWJF has supported the creation of the Health Data Consortium because we see the potential for this data to drive broad changes on systems of care, policy, sectors of the economy, consumer behavior, researchers, resulting in significant improvements in our health and increased efficiencies in our care.

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