Your Lifestyle Data Could Drive Improvement in Healthcare

Every day we share health-related information about ourselves. Digital devices count our steps, measure the quality of our sleep, assess our workout intensity, and even track how safely we drive. Our credit card purchase history documents where we spend money and what we buy. Was it fast food? Running shoes? Cigarettes? A pregnancy test? 

Privacy advocates share concerns about the flow of data and lack of transparency regarding its use, says Erin Williams, a bioethicist and biomedical innovation expert at MITRE. Consumers may have little knowledge or control over what information about them is collected or who sees it. 

At the same time, she adds, attitudes appear to be changing, lowering barriers to data sharing. By now, most customers recognize that companies collect data based on our activity and use it for a range of purposes. It has been the cost of incorporating digital technology so broadly in our lives.

And sharing can have positive benefits. A sports tracker message might prompt us to walk those final steps to hit 10,000. We may brake more gradually at stop signs or opt for a salad instead of fries.

 “There is a lot of promise from good data sharing,” Williams notes. “Thanks to shared data, we’re moving closer to a health environment where patients get the right treatment at the right time at the right dose for them. Patient data is driving this, but data from other sources, like consumers themselves, also plays a role.”

Changing Attitudes, Changing Approaches

Who thinks about consumer health data as something with commercial value? And how does that square with the idea that our health data is private?

There’s a distinction between consumer health data and patient data, which is protected under privacy laws, including the federal Health Insurance Portability and Accountability Act (HIPAA). Williams says many businesses that aren't covered by HIPAA collect and sell the data we generate for its marketing and analytics value. Chances are, we gave those businesses permission to do so when we agreed to the terms of service for devices, software, loyalty programs, and more. 

An emerging trend in the population is what Williams describes as a move toward "data altruism"—the idea that people want to share data because it can benefit the whole. They, and others, are becoming more open about health conditions that in a different time would have put them in a negative light. The volume of health data and information in the public conversation has taught these individuals that they’re not alone and made them less guarded. 

“The whole idea of data altruism is based on a lovely concept that maybe as society shifts, the reason that you might want privacy in the first place is diminished, and I think that’s good. It’s a healthy thing.”

Thought Leadership that’s Making Data Count 

Williams notes that every evolving domain follows a common story arc: Trends surface. Issues get raised. A community coalesces and action begins. Either industry decides to self-regulate or legislation requires compliance. MITRE has a long history influencing these arcs where many types of health data are concerned.

Our experts contribute to the standards, algorithms, and perspective that enables analysts to improve our lives. For example, Eldesia Granger led a team of researchers from MITRE and the University of Maryland to develop An Ethical Framework for the Use of Consumer-Generated Data in Health Care. The framework guides companies through a hierarchy of values, principles, and user-specific, actionable guidelines that enable the beneficial use of consumer-generated data. It also helps safeguard patients—the sources of the data—from negative consequences.

Another MITRE effort gives patients more power over the data in their health records. Kathy Mikk developed a draft Patient Data Use Agreement that contractually requires patient data managers to act on the patient’s behalf.

Mikk notes that in some cases, they can’t access their complete records. They don’t know when the data custodians share it or use it in a study, and they lack the leverage to opt out. With limited access to healthcare data, patients may not have the information they need to make the best decisions about their own healthcare. The Patient Data Use Agreement provides opportunities for redress if the data managers fail to meet their obligations.

Some healthcare consumers, like MITRE’s Kristina Sheridan, take a proactive approach. Sheridan’s passion for healthcare and patient engagement grew from documenting her daughter’s multi-year battle with Lyme Disease. Sheridan tracked her daughter's symptoms and recorded each doctor visit, medical test, bill, home treatment, and medication. As a systems engineer and organizational transition management expert, she developed a Patient Toolkit, which offers an easy way for patients to electronically record their own medical journey and share the information with doctors.

In treating chronic illness, tracking system information over time enables the care team to evaluate how effective therapies have been. The Patient Toolkit that Sheridan and a MITRE research team developed also has the promise of reducing costs by eliminating duplicate testing and treatment trials and identifying new concerns before they required additional treatment.

We're All in This Together

Many innovative advances rely on the data collected from multiple sources—commercial companies, health records, and patients themselves. MITRE is positioned to work with multiple data sets in an ethical manner to spark innovation. Data fuels work in analytics, modeling, predicting, artificial intelligence, and more. Data enables us to identify where the gaps exist in healthcare and research environments and then apply the discoveries that our efforts uncover.

“We are uniquely positioned for this role,” Williams says. “We are not making medical devices or creating Fitbits or things that are going to compete with industry. We are not commercializing solutions.  We are an honest broker. 

"We have a long history of creating standards, best practices, and secure spaces for sharing data to derive meaningful insights. Now we are bringing that power into the health space.”

—by Molly Manchenton