'quantified self' in 7- DATA, DATA,& MORE DATA IN HEALTHCARE by PHARMAGEEK

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Data for health - Blog by Susannah Fox | 7- DATA, DATA,& MORE DATA IN HEALTHCARE by PHARMAGEEK | Scoop.it

From susannahfox.com - November 7, 2014 1:40 AM

Last week I was part of the first community meeting for Data for Health, a program sponsored by the Robert Wood Johnson Foundation. It was held in Philadelphia on October 30 [..].

You can catch up on the #data4health tweets thanks to Symplur — and there were some good ones [..]

Once again I was struck by how wide open the definition of “data” can be. I shared the following data points, based on a Pew Research study I led:

7 in 10 U.S. adults track a health indicator for themselves or someone else.
Half track regularly, half track when something comes up.
Technology plays a minor role — about 1 in 5 trackers use a medical device, an app, or any other digital tool.
1 in 3 trackers uses paper and pencil to take notes.
Fully half of trackers say they do so in their heads (and that includes me).
1 in 3 trackers share their data with family members or clinicians, but many do not. They are asking secret questions and we must not only respect that, but build it into our planning.
45% of U.S. adults live with a chronic health condition; of those, 8 in 10 track some aspect of health.
Tracking data is not a hobby for this group, but rather a way to see themselves more clearly. This might be true of public health in general — data is a mirror we try to use to make good decisions, based on facts.

[..]

My favorite insight of the day came from someone who, when discussing who should be part of the design process for health data systems, said that front desk workers are the ones who know the community best.

Read the full blog here !

ALso be sure to see the Pew study here

Via rob halkes

Health researchers see unique opportunity in self-tracker data | 7- DATA, DATA,& MORE DATA IN HEALTHCARE by PHARMAGEEK | Scoop.it

From mobihealthnews.com - September 12, 2014 1:17 AM

As the number of self-tracking health and fitness tools available to consumers continues to climb, a persistent question has been whether the data they collect might be useful to health researchers. Along with that: Are people who self-track comfortable sharing their data with researchers?

A new, must-read report from San Diego’s California Institute for Telecommunications and Information Technology (Calit2), funded by the Robert Wood Johnson Foundation, explores these and other questions.

Based on a survey with hundreds of self-trackers, a majority — 57 percent — said one critical assurance they would need before agreeing to make their self-tracked, personal health data available to researchers was that their privacy would be protected. More than 90 percent also said it was important that their data remained anonymous. Respondents said they’d be more comfortable sharing data if they knew it was only going to be used for “public good” research.

One open-ended survey that the report’s researchers posed to self-trackers found that 13 percent of respondents specifically mentioned an aversion to commercial or profit-making use of their data, according to the report. One respondent wrote: “It depends who gets it. Research using these data will be instrumental in the future of personal predictive services, but also for that reason are likely to be exploited by marketers and the politically short-sighted. Thus I would like transparency for who has access to my data.”

Among the almost 100 health researchers interviewed for the report, 46 percent said that they had already used self-tracking data in their research previously. Some 23 percent reported that they had already worked with digital health companies that offer apps or devices to consumers to track their health.

Overall, the researchers interviewed for the report were “generally enthusiastic” about the prospect of using self-tracking data in the future — 89 percent agreed or strongly agreed that such data would prove useful to their research efforts. Almost all of those researchers surveyed said that kind of data could answer questions that other data could not.

more at http://mobihealthnews.com/30979/health-researchers-see-unique-opportunity-in-self-tracker-data/

Via nrip

rob halkes's curator insight, November 6, 2014 12:44 PM

Indeed, so many people do track some health parameters themselves: the "ground" for many interest in health apps. But when it comes to relate with these data to their "formal" health care providers, .. we get into a complete other realm. It seems even to be so that patients try to avoid this exchange. .. So many things need to be accommodated at the site of the ...

indeed, the providers, of course.
One of the implications of ehealth.
(see for instance here )

Data for health - Blog by Susannah Fox

Health researchers see unique opportunity in self-tracker data