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BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
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BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT

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Dr Inga Hunter …

Dr Inga Hunter
Department of Management,
Massey University

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  • 1. “ Beginning to Understand Health Information Privacy” HINZ seminar series, 29 February 2008, Wellington Dr Inga Hunter Department of Management, Massey University [email_address] Prof. Tony Norris Institute of Information and Mathematical Sciences Dr Dick Whiddett Department of Management (ex-Department of IS) Mr John Waldon School of Maori Studies Dr Barry McDonald Institute of Information and Mathematical Sciences BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY - THE CONSUMERS' VIEWPOINT
  • 2. Welcome
    • Does privacy matter?
    • Current study
    • Key points
  • 3. USA
    • Almost 70% respondents 1 (USA) worried that sensitive health information might leak due to weak data security (2005)
        • Sharing of medical information without a consumer's knowledge.
        • Reduction of any existing privacy rules.
        • Consumers not revealing all necessary information to their health care provider because of a fear of having their details being made available electronically.
    • 79% 2 (USA) raised security and privacy as being their major concerns (2005)
      • 2005 Harris Interactive Survey in Givens P. Medical records privacy: fears and expectations of patients . At Toward an Electronic Patient Record Conference. San Diego. Accessed 17 Aug 2005.
      • Bazzoli F. Survey: consumers favour sharing of health information nationally . HealthcareITNews. 2005.  Accessed 18 Oct 2005.
  • 4. UK
    • The PERIC project 3 (2002) found that:
      • level of identification most important
      • while patients were willing to give consent for their health information to be used in the ways described, this consent may not be informed.
    • NHS survey 4 (2003)
      • security and privacy of their information would be a major concern.
    • 3. Shickle D, Carlisle J, Wallace S et al. (2002). Patient Electronic Record; Information and Consent (PERIC) - Public attitudes to protection and use of personal health information. ScHARR Report Series No: 7. Sheffield: School of Health and Related Research, University of Sheffield. Available at http://www.shef.ac.uk/~scharr/publich/research/peric2.html
    • 4. National Health Service. The public view on electronic health records . 2003.  Accessed 4 Sep 2005.
  • 5.
    • Unless a patient can be sure that personal information will not be distributed against their wishes, they may delay or forego treatment, or be reluctant to disclose sensitive information that may in fact be crucial to their correct treatment 5,6 .
    • 5. NZHIS (1995) Health Information Privacy and Confidentiality, New Zealand Health Information Service, Wellington.
    • 6. Sankar, P., Moran, S., Merz, J. and Jones, N. (2003) "Patient Perspectives on Medical Confidentiality. A Review of the Literature", Journal of General Internal Medicine, 18, 659-669.
  • 6.
    • Most e-health projects only think about privacy and confidentiality at the end of the project when it is extremely difficult and costly to address 7,8
    • 7. Kerr, K. and Norris, A. C. (2004) Telehealth in New Zealand: Current Practice and Future Prospects", Journal of Telemedicine, Vol 10 (Suppl 1 ), S60-3 2004
    • 8. Galpottage P. A. B. and Norris, A. C., (2005) "Patient Consent Principles and Guidelines for e-Consent: a New Zealand Perspective" Health Informatics J. 11.1: 5-18
  • 7.
    • Having to rework a project because of errors in the initial phase (requirements management) can account for 70% or more of the rework costs and consume 25-40% of the total project budget 9
    • 9. Leffingwell, D. and Widrig, D. (2003) Managing Software Requirements. A use case approach, Addison-Wesley, Sydney.
  • 8.
    • New Zealand findings
  • 9. Study 1 (2002) 11
    • extremely limited patient awareness of ePHI and NHI
    • should be some form of access controls to ePHI
    • patients should specifically be asked to consent for the sharing of any ePHI
    • the majority of ePHI should be shared in a non-identifiable form
    • PHI stored in and shared between computers must be secure
    • The majority of patients appear to be placing their trust in health care and IT professionals ‘to get it right’
    • 11. Hunter, I. "Patient Attitudes to Electronic Medical Records", Privacy Issues Forum 28th March 2003, Office of the Privacy Commissioner: Auckland.
  • 10. Study 2 (2004) 12
    • Concern about the misuse of information and its disclosure to people other than health professionals
    • Lack of confidence in the privacy and security measures taken when creating or sharing records
    • 12. Ryan KM and Boustead AJ. Universal electronic health records: A qualitative study of lay perspectives. N Z Fam Physician 2004; 31(3):149–154.
  • 11. Study 3 (2006) 13
    • 73% concerned about the privacy and security of their medical information.
    • 40% concerned that EHRs would lead to sensitive medical information from leaking out
    • 42% concerned that EHRs would result in allowing the sharing of their medical information without their knowledge
    • 13. Prajesh Chhanabhai, Alec Holt (2006). “EHR’s Fear of breach? The New Zealand public’s opinion”, Department of Information Science, University of Otago. http://www.hinz.org.nz/media/2006_conference/2006ConferencePDFS/Prajesh%20Chhanabhai%20-%201120%20Thurs.pdf
  • 12.
    • 14. Whiddett, R., Hunter, I ., Engelbrecht, J., Handy, J., “Patients’ Attitudes towards sharing their health information”. International Journal of Medical Informatics, Volume 75, Issue 7, July 2006, Pages 530-541.
    • 15. Hunter, I., Engelbrecht, J., Handy, J., and Whiddett, R., ‘The complexity of managing patient information’. Proceedings of the Royal New Zealand College of General Practitioners Conference, July, 2004, Wellington, New Zealand. (Abstract).
    Study 4 (2004) 14,15
  • 13.  
  • 14.  
  • 15.  
  • 16. Overall distribution of patient responses
  • 17. SHS - sensitive information
  • 18. HRC-funded Survey 2007/8
    • random calling of a New Zealand-wide sample of Telecom residential numbers
    • people aged 18+ years
    • sample 4000 respondents with 5 vignettes each
    • giving 370 observations per vignette
    • respondents will be given different vignettes, systematically rotated to ensure all possible combinations are included
  • 19. Team members
    • Prof. Tony Norris
        • Institute of Information and Mathematical Sciences
    • Dr Inga Hunter
        • Department of Management (ex-Department of IS)
    • Dr Dick Whiddett
        • Department of Management (ex-Department of IS)
    • Mr John Waldon
        • School of Maori Studies
    • Dr Barry McDonald
        • Institute of Information and Mathematical Sciences
  • 20. Structure of vignettes
    • <person requesting information> would like to access your medical notes which contain <content of medical information> as <reason for request>. The information about you would contain <type of identification details>
  • 21. Provisional results
    • A preview of some results from the first 485 respondents
    • Note: these results are very preliminary and are subject to change with more respondents and with further analysis
  • 22.
    • Completed 485 32.10%
    • Not done 1026 67.90%
    • Female 65.36%
    • Male 34.64%
  • 23.
    • Level of comfort with access to medical record
    • Agree to access to medical record
  • 24.  
  • 25.  
  • 26.
    • Effect of level of identification
        • Your name and address,
        • Your medical record number, but no information about your name or address,
        • Totally anonymous with no information to link the record to you.
    • Current/full history/brief summary
      • ? Increase for non health professional access
  • 27.  
  • 28.  
  • 29.  
  • 30. Effect of type of identification and content on level of comfort current current current current all all all Name, #, none Effect of type of identification and content
  • 31. Effect of type of identification and content Name, #, none current current current all all all
  • 32. Sensitive issues
    • 20% of respondents
    • More likely to have reduction in mean comfort score:
        • >2 in sharing “all information” for care
        • >3 in sharing “information relevant to current health problem” with name and address for non care reason
        • >4 in “all information” with name and address for non care reason
  • 33.  
  • 34. Summary – very preliminary analysis*
    • Wide variation in response
    • Important variables
      • Level of identification
      • Content for non-care ?effect of a brief summary
      • Person
      • Care >>all other Reason for access
    • Having something considered sensitive may reduce level of comfort with access by ~25-60% and agreement by ~20%
    • * initial results subject to change with more respondents and further analysis
  • 35. Key points
    • Privacy is important
    • Privacy does not mean “don’t share”
    • Patients want to be involved – ? at what level
    • Some mismatch between what is happening and what patients would like
  • 36.
    • Need to consider
      • Level of patient identification
      • Content ?effect of a brief summary
      • Reason for access
      • Person
    • Sensitive information may reduce comfort with access
  • 37. BETTER CARE WITHOUT COMPROMISING PERSONAL PRIVACY
    • Failure to address privacy concerns may negatively impact on health care
    • Build privacy ‘controls’ at start of IS projects
    • Involve and educate patients and providers
    • TRUST
  • 38.
    • Thank you

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