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Engagement is King: Will Data Sharing Concerns Prevent Healthcare Progress?


Dr. Kvedar of Partners HealthCare asks his audience if 2015 will be the year of mobile health. Photo via @PartnersNews.

As we wrote yesterday, the 11th Annual Connected Health Symposium, presented by Partners HealthCare, was an exciting meeting of hospital clinicians, researchers, policymakers, innovators and thought leaders. These participants shared patient-focused best practices but also expressed concerns about some of the problems associated with data sharing in healthcare.

As healthcare transitions from fee for service to a pay for value model, providers are being asked to control costs while remaining profitable. These providers must also remain competitive to stay afloat, performing within value-based contracts like Accountable Care Organizations (ACOs), Bundled Payments and CMS measured programs like Medicare Advantage. It’s not surprising, then, that the focus of this year’s Symposium was Engagement – a recipe for staying afloat and current. A number of personal health monitoring solutions have recently come to market, but patients must be active participants for this technology to find success.

On a practical level, experts reiterated that engaging products must be more user-focused so patients can utilize the products as part of their daily routines. Payers and providers must adapt these frictionless product workflows to fit seamlessly into people’s lives, the experts said, and the activities patients perform should be intrinsically motivating, promoting camaraderie, visibility, personalization, and/or competitive rewards.

“We need ways of making the activity itself rewarding. We need to bring mindfulness or awareness to the behavior so people can intrinsically enjoy the activity itself,” said Nir Eyal, author of the forthcoming book “Hooked: How to Build Habit Forming Products.”

Beth Israel Deaconess Medical Center CIO John Halamka agreed. “There are three ways to influence a clinician – pay them more, save them time or help them avoid public humiliation – like the public release of quality measures,” he said. “Patients want quality, safety and efficiency.  I help them partner with care teams using unique tools that enable the patient to be an equal partner in their treatment.”

By engaging patients in activities and data-tracking apps, providers will be able to gather usable data on a number of diseases. However, before this health data can be truly shared across enterprises and organizations, government policymakers, payers and providers must work together to establish a patient-generated health data policy that balances data security and patient safety.

“We take privacy very seriously. It’s our number one priority. Once your data gets to me, I have legal obligations to keep it private,” said Dr. Joe Kvedar. Kvedar is the Founder and Director of the Center for Connected Health with Partners HealthCare. “What I usually like to say regarding this question is how refreshing and cool and exciting is it to use Google Maps. It is better than the navigation system in your car, because you give them so much information, and everyone else does too. We are comfortable in other sectors with privacy tradeoffs. There is some work to do in healthcare to address these tradeoffs.”

The patient-focused approach and privacy tradeoffs were echoed throughout the Symposium as innovators shared insights about what drives engagement and the adoption of digital health products.

“You have to ask the patient ‘what do you want out of your care?’’ said attendee Nick Dougherty, CEO of VerbalCare. “The only continuous component of the system is the patient, but they feel like outsiders. They don’t realize they can be and are the arbiters of their health.”

“As for the Ethics of data sharing – it worries people on Capitol Hill, worries some stakeholders, but for the general population they don’t care. There are more teenagers in Scandinavia who are worried about the Snapchat breach,” said Claus Nielsen, Vice Chair for Continua Europe and special advisor to the Danish government’s Advisory Council on Telemedicine. Nielsen spoke on a panel titled International Perspectives on Scaling Connecting Health.

“The balance is about data security and patient safety,” Nielsen said. “If you get better treatment from patient data, that is more interesting. We have had mobile phones for so long, and yet I can’t see my son’s glucose data while he’s in school. We need to establish some kind of trust. In Denmark and Scandinavia, most people trust their public system.  They are in it for their mission. It costs half the amount of the U.S. system, the quality is high, it’s for everybody and people are satisfied.”

Eyal closed his lecture with an intriguing warning: “We need to be very thoughtful about how we use the psychology of habit design for good. If we are not careful, these are the products that people take to bed at night, the first thing they grab when they wake up in the morning. We have a very special responsibility to use the psychology of habit design for good.”


Nir Eyal challenges his audience to consider the ramifications of addictive technology. Photo via @CRICOtweet.

Robert Schultz

Robert Schultz

    Robert Schultz has an MBA in Information Systems from University of Massachusetts-Boston and a BS in International Business from Northeastern University, where he served as Business Manager for the university’s largest student publication, The Northeastern News. Schultz is an experienced healthcare technology startup enthusiast who was involved with the patient monitoring company Aware Engineering through the MassBio MassCONNECT program.

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