Healthcare // Mobile & Wireless
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6/4/2014
09:06 AM
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Mobile Health Devices: Public Health Trend Spotters?

Health Data Exploration Project sees research gold in mining consumer health data from pedometers, fitness bands, and other gadgets.

Healthcare Dives Into Big Data
Healthcare Dives Into Big Data
(Click image for larger view and slideshow.)

All those wired pedometers, glucometers, heart rate and blood pressure monitors, winning adoption from either very ill or fitness-conscious consumers -- they could be a gold mine for public health researchers if the researchers could just get at the data.

At this week's Health Datapalooza conference in Washington, D.C., the Health Data Exploration Project announced it was forming a network of academics, scientists, and health IT companies interested in figuring out the logistical, practical, and ethical issues related to mining consumer health data to spot public health trends. This is a project of the California Institute for Telecommunications and Information Technology (Calit2), which operates out of two University of California campuses, UC San Diego and UC Irvine, and exists to accelerate innovative uses of telecom and IT.

Following the publication of its study on Personal Data for the Public Good, Calit2 secured a $1.9 million grant from the Robert Wood Johnson Foundation to work on the issues identified in the report.

"What we see is a huge increase in the number of devices, apps, and other ways we are generating person-level data," said Matthew Bietz, lead co-investigator for the project. "This is a huge, untapped resource for public health and our goal is to figure out how to take advantage of it in an appropriate, respectful, and feasible way."

[Big players are getting serious about mobile health products: Apple Partners With Epic, Mayo Clinic For HealthKit.]

Data collected by consumer devices tends to be lower quality than data collected by professional medical devices, but that might be outweighed by its other advantages, Bietz said. The data can be collected steadily, over a long period of time, in a more natural setting. For example, traditional hospital sleep tests result in "the most unnatural night of sleep you've ever had in your life," wired up to monitors in a hospital room, he said.

In contrast, a Fitbit or other monitoring wristband can capture data on how you sleep at home in your own bed, over a period of weeks or months, which might tell an entirely different story. Data aggregated from many patients, together with some journal entries of their habits, might be used to test prevailing theories about healthy and unhealthy lifestyles, such as the idea that it's not good to use your laptop in bed before going to sleep, he said.

Most consumers are willing to consider sharing their personal health data for research purposes (Source: Personal Data for the Public Good report)
Most consumers are willing to consider sharing their personal health data for research purposes (Source: Personal Data for the Public Good report)

Although consumer-generated data is not the best match for all research needs, "it has a huge amount of potential for filling in gaps in traditional kinds of data sets," Bietz said. "It lets us ask questions that we couldn't before."

After surveying both consumers and researchers, the institute found "relatively good alignment between the kind of data people are tracking and the data researchers would like to get their hands on," Bietz said. The privacy of healthcare data is a concern for consumers, so one challenge is figuring out what to promise them and how to keep those promises. Some consumers also realize the data they are generating might have value -- particularly if it feeds into research done by drug companies, as opposed to academic research -- and would like to be compensated for releasing it. Others are perfectly willing to give it away.

The companies that make the software and devices are a third wheel in the relationship whose motivations matter. The companies typically express some interest in the public health value of the data they are gathering, except that it's not really central to their business. On the other hand, they might be persuaded to act as intermediaries -- offering users of their products an option to participate in research studies -- if they saw it as a way to boost their brands and the reputation of their products, noted Bietz.

As an ethical matter, Bietz said he wants to ensure that opportunities for consumers to participate are distributed evenly. "What we don't want to do is create a new digital health divide," he said.

Has meeting regulatory requirements gone from high priority to the only priority for healthcare IT? Read Health IT Priorities: No Breathing Room, an InformationWeek Healthcare digital issue.

David F. Carr oversees InformationWeek's coverage of government and healthcare IT. He previously led coverage of social business and education technologies and continues to contribute in those areas. He is the editor of Social Collaboration for Dummies (Wiley, Oct. 2013) and ... View Full Bio

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Alison_Diana
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Alison_Diana,
User Rank: Author
6/4/2014 | 5:31:38 PM
Re: Would you share your personal health data for research?
I think I would -- but I'd prefer having the option of opting in or out than not knowing whether I was doing it or not. It's the lack of control or being taken for granted I don't like, that idea of 'ask forgiveness, not permission!'
Alison_Diana
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Alison_Diana,
User Rank: Author
6/4/2014 | 5:30:14 PM
Re: Garbage In...
That's interesting, @Gary_El. I'm no statistician and have no idea how that fascinating study works, but the theory makes sense. You'd imagine there's some kind of computerized model that could make even the most "off" numbers meaningful, at least en masse. And trend info must be valid - as in, people are walking more/less than in prior times, for example.
Gary_EL
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Gary_EL,
User Rank: Ninja
6/4/2014 | 4:45:48 PM
Re: Garbage In...
Way back in ancient times, when I took courses with statistics as part of the syllabus, I remember some commentary that in certain types of cases, even if each data point was itself invalid, there were advanced techniques available to "normalize" the data so some valid information could be gleaned from it. Computers were young in those days, and the amount of data available then was tiny compared to what these types of devices will make available now and in the future. And, more powerful computers means more powerful numerical methods can be employed today, also. So, there may be something of great worth here.
David F. Carr
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David F. Carr,
User Rank: Author
6/4/2014 | 10:55:17 AM
Would you share your personal health data for research?
Curious how many people would gladly share their personal health data for research. I think if that was a checkbox on the signup page for a Fitbit or a wireless blood pressure monitor, I'd check it without hesitation if I believed it would help somebody somewhere. No skin off my nose.
Alison_Diana
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Alison_Diana,
User Rank: Author
6/4/2014 | 10:36:52 AM
Privacy Implications
Britain's The Guardian has an interesting article on how wearable tech developers are using and selling our data for their APIs. This is an important issue and one that hasn't got enough attention, I don't believe. Some businesses make a sizable chunk of change from personal information users freely give, information that's very private. I don't believe wearers of these devices often recognize what happens to their data once some developers receive it and I want to see more clarity, contracts written in non-legalese, a way for users to freely and easily access their own data at will, and opt-out (or preferably opt in) to research/marketing/any other databases.
Alison_Diana
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Alison_Diana,
User Rank: Author
6/4/2014 | 10:08:57 AM
Garbage In...
From what I gather, some devices are notably incorrect in their data. While that may not matter if it encourages someone to walk -- does it really make a difference if they really walk 10,000 steps or 14,000 steps? -- I hope researchers take these big discrepancies into account.
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