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Kate LeMay
Research into people’s attitudes to use
of health data
Senior Research Data Specialist
1 November 2017
Secondary use of health record data for research purposes
48%
45%
7%
Australia Speaks (Research Australia)
Strongly Suppor...
42%
34%
10%
11%
3%
Medical records in medical research if data was
anonymised (UK)
Very willing
Farily willing
Fairly unwi...
26%
32%
18%
10%
14%
Identifiable health information for research
purposes (NSW)
Strongly agree
Slightly agree
Undecided
Sl...
“Understanding Patient Data supports better
conversations about the uses of health information.
Our aim is to explain how ...
Development of a Framework for Secondary Use of
My Health Record Data
https://www.myhealthrecorddata.healthconsult.com.au/
References
Australia Speaks. Research Australia. 2017. Available from https://researchaustralia.org/reports/public-opinion...
Takeaway messages
• People support reuse of
medical data for research
purposes (but not 100%!).
• Appropriate consent is
i...
Senior Research Data Specialist
kate.lemay@ands.org.au
Kate LeMay
With the exception of third party images or where otherw...
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Research into people's attitudes to use of health data

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Presentation by Kate LeMay, ANDS, on 1 November 2017, to the 'Patient views on data sharing' ANDS webinar.

Recordings, slides, transcripts, links for all health and medical webinars are at: http://www.ands.org.au/working-with-data/sensitive-data/medical-and-health/webinars-health-and-medical

Published in: Health & Medicine
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Research into people's attitudes to use of health data

  1. 1. Kate LeMay Research into people’s attitudes to use of health data Senior Research Data Specialist 1 November 2017
  2. 2. Secondary use of health record data for research purposes 48% 45% 7% Australia Speaks (Research Australia) Strongly Support Somewhat support Oppose Australia Speaks. Research Australia. 2017. Available from https://researchaustralia.org/reports/public-opinion-polling-2017/ Page 13
  3. 3. 42% 34% 10% 11% 3% Medical records in medical research if data was anonymised (UK) Very willing Farily willing Fairly unwilling Very unwilling Don't know Wellcome Monitor. Wellcome Trust. 2015. Available from https://wellcome.ac.uk/what-we-do/our- work/public-views-medical-research
  4. 4. 26% 32% 18% 10% 14% Identifiable health information for research purposes (NSW) Strongly agree Slightly agree Undecided Slightly disagree Strongly disagree NSW 2017 Community Attitudes Towards Privacy Report. Information and Privacy Commission NSW. 2017. Available from https://www.ipc.nsw.gov.au/news-media/news/nsw-2017-community- attitudes-towards-privacy-report
  5. 5. “Understanding Patient Data supports better conversations about the uses of health information. Our aim is to explain how and why data can be used for care and research, what’s allowed and what’s not, and how personal information is kept safe. We work with patients, charities and healthcare professionals to champion responsible uses of data.” www.understandingpatientdata.org.uk
  6. 6. Development of a Framework for Secondary Use of My Health Record Data https://www.myhealthrecorddata.healthconsult.com.au/
  7. 7. References Australia Speaks. Research Australia. 2017. Available from https://researchaustralia.org/reports/public-opinion-polling- 2017/ Page 13 Australian Community Attitudes to Privacy Survey. Office of the Australian Information Commissioner. 2017. Available from https://www.oaic.gov.au/engage-with-us/community-attitudes/australian-community-attitudes-to-privacy-survey- 2017 NSW 2017 Community Attitudes Towards Privacy Report. Information and Privacy Commission NSW. 2017. Available from https://www.ipc.nsw.gov.au/news-media/news/nsw-2017-community-attitudes-towards-privacy-report Understanding Patient Data. Wellcome Trust UK. 2017. Available from https://understandingpatientdata.org.uk/ Especially ‘How do people feel about the use of data?” https://understandingpatientdata.org.uk/how-do-people-feel- about-use-data Wellcome Monitor. Wellcome Trust. 2015. Available from https://wellcome.ac.uk/what-we-do/our-work/public-views- medical-research Developing a framework for the secondary use of My Health Record data. Australian Government Department of Health. 2017. Available from https://consultations.health.gov.au/health-systems-policy-division/developing-a-framework-for-the-secondary-use-of- my/ and https://www.myhealthrecorddata.healthconsult.com.au/ Spencer K, Sanders C, Whitley EA, Lund D, Kaye J, Dixon WG. Patient Perspectives on Sharing Anonymized Personal Health Data Using a Digital System for Dynamic Consent and Research Feedback: A Qualitative Study. Eysenbach G, ed. Journal of Medical Internet Research. 2016;18(4):e66. doi:10.2196/jmir.5011. Charlotte J. Haug. N Engl J Med 2017; Whose Data Are They Anyway? Can a Patient Perspective Advance the Data- Sharing Debate? 376:2203-2205 DOI: 10.1056/NEJMp1704485
  8. 8. Takeaway messages • People support reuse of medical data for research purposes (but not 100%!). • Appropriate consent is important. • Levels of consent for data sharing may be an option.
  9. 9. Senior Research Data Specialist kate.lemay@ands.org.au Kate LeMay With the exception of third party images or where otherwise indicated, this work is licensed under the Creative Commons 4.0 International Attribution Licence. ANDS is supported by the Australian Government through the National Collaborative Research Infrastructure Strategy Program. Monash University leads the partnership with the Australian National University and CSIRO.

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