Ponderings from the Podium: Big Data, Mobile Health & Information Exchange

Associations and federal agencies have been busy hosting meetings and webinars that address pressing issues facing healthcare organizations, including data analytics, privacy and security, health information exchange and innovation. Clinical Innovation + Technology was there and here’s your chance to listen in.

Tackling transparency

Speakers at the April TEDMED conference discussed the process of innovation, how to better use health data and advances in mobile health.

If health data are a valuable resource, why not donate them like blood?, posed Amy Abernethy, MD, director of the Center for Learning Health Care, Duke Clinical Research Institute. People should act as stewards of their own information, which they could share and distribute to enable scientific research. “We need a mechanism, something that we trust, that allows us to aggregate our health information and carefully share it onwards.”

The digital traces consumers leave behind in their mobile technology interactions offer clues to their well-being and can inform their healthcare, said Deborah Estrin, computer science professor at Cornell Tech in New York City and co-founder of Open mHealth.

“We are continually generating digital breadcrumbs, and those breadcrumbs together form digital traces,” Estrin said. Social networks, search engines, mobile operators, online games and e-commerce sites all aggregate and analyze these traces or “small data,” but no services are considering the value of returning this information back to the consumer, she noted.

A robust and sustainable privacy policy based on transparency could open the doors to consumers understanding more about themselves and their health, Estrin said. She currently is working on prototypes, or vehicles to repackage consumers’ small data that is digestible for the end user.

“We should be able to mine those digital traces for our own purposes,” Estrin said, noting that data-driven insights often detect early warnings to a health problem. For instance, digital traces can inform a patient whether a new medication or supplement is working. If someone begins taking a supplement for arthritis, his or her digital footprint would provide quantitative and objective measures showing whether that person is more or less sedentary.

Several representatives of consulting firm Booz Allen Hamilton addressed issues tied to the power of data to transform healthcare.

We can’t unleash the power of data if they are stuck in various stovepipes, said Executive VP Susan L. Penfield. “It’s only powerful if you can get at it.” Advances in EHR systems and personal health information becoming available on mobile devices are making that kind of access possible.

To better engage patients in their healthcare, providers must reframe the issue, said VP Chris Foster. Patients don’t want to be told what to do. “There’s been an interesting shift away from selling health and prevention to talking more about quality of life. We’ve changed the debate away from fear to quality of life as a motivator. Quality of life is very empowering.”

Patient engagement is “an opportunity to get people involved,” said VP Grant McLaughlin, “but it has to be in bite-size chunks and on their terms.” Community engagement is happening, he said, although “some are being dragged to the conversation and some come with open arms.” People are gravitating toward online communities because they are very niched communities that use storytelling aspects to connect people. “Some groups are persuaded by science and some are persuaded by the social.”

Expanding exchange

The Office of the National Coordinator of Health IT (ONC) released its Governance Framework for Trusted Electronic Health Information Exchange and more than 1,000 callers listened to a conference call on the topic, indicating a high level of interest among healthcare providers.

The framework covers four key categories of principles: trust, business, technical and organizational. While much progress has been made, said Farzad Mostashari, MD, ScM, national coordinator of health IT, several obstacles must be addressed.

“Software developers are working very hard to implement interoperability standards to reduce cost and complexity,” he said. “We need to improve the business case for information exchange so that it’s profitable to share information not hoard.”

Mostashari said the industry needs “mechanisms where the rules of the road, interoperability, privacy and business practices are standardized to the extent possible so that information can flow without the need for protracted, painful, expensive contract negotiations.”

Steven Posnack, MHS, MS, director of ONC’s federal policy division, said the agency chose to frame the trust principle from the patient perspective to help create an environment in which patients can do things such as access notice of data practices; receive explanations of privacy and security policies; be provided with meaningful choice; request exchange limits based on data type or source; access and request corrections to their information; and be assured their information is consistently and accurately matched when exchanged.

The business principles “are not necessarily to tell HIE governance entities how to run their business, but more to frame from their perspective of how exchange can take place with patients’ interests in mind, set standards of participation that promote collaboration, provide open access to exchange services, publish statistics, and maintain and disseminate information.”

Following the March announcement of a grant issued to two organizations to further HIE governance, David C. Kibbe, MD, MBA, president and CEO of DirectTrust, said there already is progress to report, including an accreditation program and a certification seal for plug-and-play products.