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Top 5 Guidelines for Using mHealth Data Responsibly

The Vitality Institute has unveiled a checklist for mHealth developers and healthcare providers who gather, store and use data from consumer-facing technology.

By Eric Wicklund

- A global research organization is hoping a new set of guidelines for the development and use of personal health technologies will make them more palatable to healthcare.

The five guidelines for “responsible innovation and stewardship” were unveiled at HIMSS16 earlier this year in Las Vegas. Developed by the Vitality Institute with help from Microsoft, the Qualcomm Institute and the University of California at San Diego, they aim to create a framework for how wearables, apps, sensors and other consumer-facing mHealth tools are used.

“We want to make (mHealth developers and healthcare providers) accountable,” says Gillian Christie, health innovation analyst for the New York-based institute. “As consumers are taking more ownership of their own health data … they’re asking for transparency” on how that data is collected by mHealth devices and then stored and used.

“The guidelines promise to be an enormous step forward in using personal technologies to promote health,” Kevin Patrick, MD, MS, a professor at the University of California, San Diego, director at the Qualcomm Institute and one of the authors of the guidelines, said just prior to HIMSS16. “It is essential that consumer protections are in place and followed to ensure that consumers are confident in how corporations handle their personal health data.”

The guidelines:

  1. Build health technologies informed by science;
  2. Scale affordable health technologies;
  3. Guide interpretation of health data;
  4. Protect and secure health data; and
  5. Govern the responsible use of health technology and data.

The institute and its partners launched the first draft of guidelines in early 2015, opening them up to feedback from across the globe. Christie says that feedback included strong interest in the transparency and accountability of those using health data – in other words, making sure that developers and health systems gather, store and use health data responsibly, and that consumers always know where and how their data is being used.

“These personalized health technologies (PHTs) produce completely new categories of data that make precision medicine both a reality and potentially cost-effective,” Christie, Patrick and Dennis Schmuland, Microsoft’s chief health strategy officer for the U.S. Health and Life Sciences Division and a co-author of the guidelines, said in a 2015 submission to the Journal of Health Communication. “The voluminous data trails these smartphones, sensors, devices and wearables leave behind also open new doors for misuse and harm by well-intentioned innovators and malevolent characters. Innovation of PHT is several laps ahead of ethical, legal and social (ELS) considerations that are needed to allay legitimate concerns of prospective users and their healthcare providers.”

“It’s always tricky,” Christie said. “There’s always this balancing act with new technology” that pits innovation against regulation.

That the guidelines coming from the industry, rather than the government, might make developers and health systems more amenable to following them.

“We’re historically thought of the government as being the ones to introduce guidelines,” Christie said. But these are feedback-driven, industry-led and shared values.

The next step may very well be charting who’s talking about the guidelines, and how often. Christie said she hopes they’ll pop up in discussions around the world, and start figuring their way into best practices and case studies that explore how healthcare leaders use consumer health data. Eventually they may even be used in the drafting of mHealth policies or regulations.

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