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
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Research into people's attitudes to use of health data
- 1. Kate LeMay Research into people’s attitudes to use of health data Senior Research Data Specialist 1 November 2017
- 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. 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. 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. “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. Development of a Framework for Secondary Use of My Health Record Data https://www.myhealthrecorddata.healthconsult.com.au/
- 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. 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. 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.
Notas del editor
- Research Australia is a national alliance representing the health and medical research sector. They commission an annual opinion survey about health and medical research. This year it showed that 93% of respondents supported the use of their health record data for research purposes. Interestingly, this survey doesn’t specify whether that data is identifiable or not.
- A study commissioned by the Wellcome Trust, which is the UK’s version of NHMRC, asked respondents how willing they would be to allow their medical records to be used in a medical research study, if the information given to researchers excluded their name, date of birth, address, and contact details. In 2015 the proportion very or fairly willing was 77% In 2012 it was 60%, so support has increased over that time.
- The NSW Information and Privacy Commission report from this year found that 58% of respondents agreed that they were willing for their identifiable health information to be used for research purposes. I wonder if the result would be different if they specified the information would not be identifiable, like how PHRN does data linkage in Australia? For more information about data linkage for research in Australia watch next week’s webinar.
- Understanding patient data is a website owned by the Wellcome Trust in the UK, so some of the information there is UK specific but a lot is generalisable. It has a collection of studies about patient views on health data reuse, information about words to use when talking about data with patients, how to best engage the public and patients with issues around uses of patient data, and more. I recommend taking a look at it.
- If anyone is interested, the Department of Health has currently commissioned a consulting company to develop a framework for the secondary use of my health record data. They have a written submission process, workshops, webinars and interviews. So if you want to know more, check out their website.
- These references are for the research I showed, plus some more of relevance to this area. These slides will be available after the webinar on the ANDS website.