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Big Desire to Share Big Health Data: A Shift in Consumer Attitudes toward Personal Health Information

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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.

Published in: Health & Medicine
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Big Desire to Share Big Health Data: A Shift in Consumer Attitudes toward Personal Health Information

  1. 1. Big Desire to Share Big Health Data: A Shift in Consumer Attitudes toward Personal Health Information K. Thomas Pickard and Melanie Swan 2014 AAAI Spring Symposium Series Stanford University March 26, 2014
  2. 2. “Given the choice between pizza and privacy…a remarkable number will opt for the pizza.”
  3. 3. What did we do? • Online survey to gauge consumer attitudes toward sharing health information • Period: July 30, 2012 to April 30, 2013 • 128 respondents and >7,900 data points • 27 questions
  4. 4. Genomera: Health collaboration
  5. 5. Traitwise: Survey platform
  6. 6. Why did we do this? • Learn more about healthcare research • Answer some questions: 1. Are consumers willing to share genomic, medical and health tracking information for research purposes? 2. Do consumers have interest in receiving recommendations based on shared personal health information?
  7. 7. Willing to share… • 95% responded “Yes” or “In some cases.” In some cases Yes No 0 10 20 30 40 50 60 70 Percent I am willing to share my health and medical information...
  8. 8. What would I share? • Diet (88%) • Exercise (88%) • Traits (85%) • Diseases and conditions (81%) • Genomic data (80%) • Fitness tracking information (80%) • Medications (79%) • Environmental factors (78%) • Electronic medical records (72%) • Other (27%) 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Under the right circumstances, I would be willing to share the following health and medical information... Average The average across all data types was 76%.
  9. 9. Our sample was WIRED • 64% of respondents reported owning one or more tracking devices. 0% 10% 20% 30% 40% 50% 60% 70% 0% 5% 10% 15% 20% 25% 30% 35% 40% Number of Tracking Devices Pct respondents with one or more tracking devices (64%)
  10. 10. Would I share irreversibly anonymized data? • 71% are willing to share irreversibly anonymized information. Yes In some cases No 0 10 20 30 40 50 60 70 80 Percent I am willing to let researchers use my information if it is irreversibly anonymized...
  11. 11. Would I share identified data? • 68% would share fully identified information in some cases. In some cases No Yes 0 10 20 30 40 50 60 70 80 Percent I would share my health and medical information even if it were not anonymized...
  12. 12. I want to know… • Actionable things I can do to improve my health (93%) • My likelihood to develop a disease (86%) • What others like me are doing to stay healthy (82%) • My current state of health (81%) • My health relative to peers or others (71%) • How my health may affect my children (62%) • Other (17%) 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Based on the information I share, I would like to know...
  13. 13. What’s my motivation? • Make new health discoveries (88%) • Learn more about personal health risks (82%) • Desire to change current system (73%) • Health condition (66%) • Learn more about my ancestry (31%) • Want something in return (15%) • Bragging rights (11%) 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% I am motivated to share my health information for the following reasons...
  14. 14. Who should control access? • Myself (69%) • Non-profit organizations (45%) • Universities and academic institutions (38%) • National databanks (34%) • Government (25%) • For-profit companies (6%) • Insurance companies (3%) 0% 10% 20% 30% 40% 50% 60% 70% 80% For research purposes, I believe that access to anonymized medical data should be controlled by…
  15. 15. What are the barriers to sharing? • Privacy concerns (85%) • Lack of awareness of value of contribution (77%) • Concern about data being used for profit (58%) • No easy way to share data (45%) • Other (13%) 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% Privacy concerns Lack of awareness of value of data contribution Concern about data being used for profit No easy way to share data Other I believe the barriers that prevent people from sharing genomic and medical data for research are...
  16. 16. What am I concerned about? • Insurance discrimination (67%) • Personal or family privacy (43%) • Employment discrimination (40%) • Racial discrimination (11%) • Other (20%) 0% 10% 20% 30% 40% 50% 60% 70% 80% My concern with sharing my genomic data is...
  17. 17. Give data. Get feedback… • Respondents are more likely to share if they receive personalized recommendations based on discoveries made from their data. Less likely More likely I would be more likely to share my health and medical information if I received personalized recommendations based on discoveries made from my data...
  18. 18. And I would pay for it… • Non-profit organization with recommendations based on scientifically validated algorithms (63%) • Physician or healthcare provider (59%) • Genetic counselor (52%) • For-profit company with recommendations based on scientifically validated algorithms (40%) 0% 10% 20% 30% 40% 50% 60% 70% After uploading my health and medical information, I would pay one of the following to review my data and provide recommendations...
  19. 19. Limitations? 1. Internet connectivity 2. Convenience sample (n=128) 3. Education level
  20. 20. Our sample was educated Sample: 59% of respondents have Master’s level education or higher. US average: 10% have Master’s level education or higher. 0% 5% 10% 15% 20% 25% 30% 35% The highest degree or level of school I have completed is…
  21. 21. Can I replicate the results? • Order details: • Responses: 101/101 • Ordered: February 23 2014 • Completed: February 23 2014 • Price: $205.00 • • Target Market: • Country: United States • Language: English • Gender: Males and Females • Age Range: 18 - 65+ years old • Ethnicity/Race: Any • HH Income: $0 to $500k+ • Education: Any • Employment: Any • Career: Any • Relationship: Any • Parental status: Any • Location: Any 20% had Master’s level education or higher
  22. 22. Similar results A1 A2 A3 0 10 20 30 40 50 60 Answer Resp. (101) A1: Yes 40.5% (41) A2: No 10.8% (11) A3: In some cases 48.5% (49) I am willing to share my health and medical information...
  23. 23. • In the “No” category, 63% of respondents reported having less than 4 year degree. Education seems to play a strong role…
  24. 24. Conclusions 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.
  25. 25. Health Information Sharing Model Trust Motivation Community Informed Consent Consumer
  26. 26. Final thought… “Wouldn’t it be amazing to have anonymous medical records available to all research doctors?” – Larry Page Image credit: Daniel Kraft
  27. 27. Acknowledgements • Greg Biggers – Genomera • Rechelle Fryklund and Michael Simpson – Traitwise • Takashi Kido – Riken Genesis Co., Ltd., Japan • We also would like to acknowledge and thank the survey respondents for their participation.
  28. 28. Questions? K. Thomas Pickard ktpickard [at] startcodon.org @kthomaspickard www.linkedin.com/in/kthomaspickard Disclosure statement: Nothing to disclose Paper: http://bit.ly/share-big-health-data-paper Survey: http://bit.ly/sharing-health-info-survey-form 28

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