Survey: Public enthusiastic--but wary--about sharing personal health data

With the likes of Pfizer ($PFE) keen for clinical trial participants to track their personal health data--and Apple ($AAPL) and Google ($GOOG) readying to provide the technology--mobile and wearables look set to make an impact on research. But does the public want to give researchers access to their data?

The California Institute for Telecommunications and Information Technology (Calit2) has probed the question in a survey of 465 people. While acknowledging the pool of respondents is skewed towards wealthy early adopters, Calit2 draws some tentative conclusions from its poll. The headline takeaway is positive for researchers--almost four-fifths of people polled are willing to share their data. However, this figure hides variation in when people are willing to share their data and under what conditions.

As in the recent English patient database furor, privacy, anonymity and the use of data by businesses were all major issues for the respondents. While only 57% would want assurances about privacy before sharing data. more than 90% said it was important the information is anonymous. The identify of the the organization using the data is also significant. Respondents who will happily share data for the "public good" said they would be unhappy about their information being used for commercial gain.

Whether people perceive Big Pharma R&D as being for the public good or commercial gain is unclear from the survey. Researchers recognize the need to tread carefully, with many raising concerns about the informed consent process, but overall are excited about the potential of self-tracking. Almost 90% said it would help their work, but many still see lots of problems. More than one-quarter of research respondents said self-tracking data cannot be trusted, with some viewing the perceived shortcomings as insurmountable.

The mistrust stems, in part, from concerns that consumer tracking devices have never gone through a validation process. Some called for more studies into the validity and reliability of sensors, while others highlighted the need to ensure data from multiple sources can be aggregated. Initiatives like Mark Cuban-backed Validic are trying to standardize data from different devices, but are yet to allay the concerns of all researchers. "There's too much variability for effective data integration" a researcher told the pollsters.

- here's the report (PDF)
- read MobiHealthNews' take

Suggested Articles

The new solution aims to streamline the incorporation of human genomic data into clinical trial designs.

TriNetX's platform uses EHR data to help drug developers with clinical trial protocol design and study site and participant identification.

The $58 million financing round represents biopharma industry's growing interest in genomics data.