Paper: Big Desire to Share Big Health Data

health-data-sharing-model

Today I presented this paper about sharing personal health data at the 2014 AAAI Spring Symposium Series, hosted at Stanford University. The paper, co-authored with Melanie Swan, summarized the results of an online survey to gauge consumer attitudes toward sharing health information. Here’s the abstract:

Sharing personal health information is essential to create next generation healthcare services. To realize preventive and personalized medicine, large numbers of consumers must pool health information to create datasets that can be analyzed for wellness and disease trends. Incorporating this information will not only empower consumers, but also enable health systems to improve patient care. To date, consumers have been reluctant to share personal health information for a variety of reasons, but attitudes are shifting. Results from an online survey demonstrate a strong willingness to share health information for research purposes. Building on these results, the authors present a framework to increase health information sharing based on trust, motivation, community, and informed consent.

The take-home messages from the paper are:

  1. Consumers are willing to share health data under the right conditions.
  2. Education seems to play a strong role.
  3. Consumers want to be connected to their data.
  4. Develop models to encourage sharing. 

My favorite part of the talk was explaining how I repeated the survey using an online market research tool. Our respondents were extremely educated — 59% had a Master’s level education or higher — so I wondered if education played a role in their willingness to share. In less than two hours, I posted the survey and received 100 responses (compared with the nine months it took to receive 128 IRB-consented responses). This time, about 20% of the respondents had a Master’s level education or higher, still higher than the US average of 10%, according to the US Census Bureau. Nevertheless, overall attitudes toward sharing were similar. In particular, respondents who were not willing to share their health information tended to have little or no college experience. Although both surveys operated on convenience samples, the results suggest that education plays a role, perhaps because education can change our perception of the risks and benefits associated with sharing health data. Interestingly, these results and conclusions were similar to those found in a recent report published by the Health Data Exploration project sponsored by the Robert Wood Johnson Foundation. More information about this project:

The survey is ongoing! It takes just five minutes, so please add your voice here.

2 thoughts on “Paper: Big Desire to Share Big Health Data

  1. Pingback: Paper: Big Desire to Share Big Health Data - DNAdigest.org

  2. Pingback: Exploring Markets of Data for Personal Health Information | GenomeDad Blog

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