Sacred Secrets Meet Cyberspace Privacy Issues for Consumers  Jo Fitzpatrick Women’s Health Action Trust HINZ Conference: F...
Sacred Secrets Meet Cyberspace Is this a straw woman?  2006 Privacy Commission survey 78% concerned about confidentiality ...
<ul><li>Cartwright was seminal </li></ul><ul><ul><li>WHA  exposed the ‘Unfortunate Experiment and supported the women thro...
<ul><li>Mid 1990’s – North Health and patient enrolment </li></ul><ul><li>Since 1996 –written regularly to MoH on NHI </li...
<ul><li>Jan 1998 – took part in a review of NZHIS Governance arrangements </li></ul><ul><li>1998 – put in a submission to ...
<ul><li>Submissions and consultations on WAVE report; NHIS Action zones; .health.nz proposal etc etc </li></ul><ul><li>Att...
<ul><li>Comment – Sandra Coney 2000 </li></ul><ul><li>Despite activity   by WHA we feel </li></ul><ul><li>we have made neg...
<ul><li>2007 Committee  appointment  </li></ul><ul><li>2008 HISAC sponsored Consumer Forum </li></ul><ul><li>HINZ conferen...
<ul><li>Proven Vulnerability – Cartwright; Health (Screening Amendments) Bill </li></ul><ul><li>Holders of sensitive healt...
<ul><li>What is contained in a personal health record? </li></ul><ul><li>Is the clinical relationship about me or an elect...
<ul><li>Process of allowing or denying access involves a loss of privacy – no, you can’t see my abortion clinic, ACC sensi...
Consumer Issues and concerns Access – Employers/Insurers/ACC <ul><li>Privacy Commissioner, Marie Schroff notifies the NZMA...
<ul><li>CISCO network aims to connect 17,000 healthcare providers and Boards (The Business, 2007) </li></ul><ul><li>ADHB c...
<ul><li>Within the health system – FPA; Screening and cancer registers; </li></ul><ul><li>Across Government – ACC; Social ...
<ul><li>Don’t know what’s possible </li></ul><ul><li>Don’t know the extent to which it occurs already – Testsafe; PHOs/DHB...
<ul><li>Comforted by the thought that access  can now be audited </li></ul><ul><li>Concerns – occurs after the fact </li><...
<ul><li>We are not informed : huge gaps in knowledge </li></ul><ul><ul><li>NHI number  (90% don’t know. Inga Hunter, 2006)...
Consumer Issues and concerns Future directions <ul><li>Advances in   Genetic technology and its implications  > Guthrie ca...
<ul><li>Research – Inga Hunter </li></ul><ul><ul><li>Mapping the extent of the knowledge gap </li></ul></ul><ul><ul><li>Gi...
<ul><li>Established a health information consumer network </li></ul><ul><li>Requested a consumer voice in health informati...
<ul><li>It’s not about you – it’s OUR information  </li></ul><ul><li>We have interests in common – it’s about us and our h...
<ul><li>We know you care –  </li></ul><ul><li>that doesn’t give you the Machiavellian right to assume you know what’s best...
<ul><li>Wholesale distribution/accumulation  of personal health information is in and of itself a good thing </li></ul><ul...
<ul><li>We are stupid </li></ul><ul><li>We don’t understand </li></ul><ul><li>We will say NO </li></ul><ul><li>We will say...
<ul><li>Simple as  </li></ul><ul><li>1,2,3… </li></ul>
<ul><li>Tell us  </li></ul><ul><li>What you are doing  </li></ul><ul><li>What you’d like to do </li></ul><ul><li>AND  </li...
<ul><li>Engage us in the conversations and planning </li></ul>The KISS Solution 2 ?
<ul><li>Find out what would allay our concerns if we have any </li></ul><ul><li>AND </li></ul><ul><li>Ask us for our bless...
WHY 1? <ul><li>Because privacy is a basic human right  </li></ul><ul><li>Health information privacy is the right to contro...
WHY 2? <ul><li>Information protection is not just about security systems, swipe cards and passwords. IP is about something...
WHY 3? Because the   knowledge gap between us  is at least as wide as the Cartwright gap was 20 years ago with the potenti...
<ul><li>Health Information Technology </li></ul><ul><li>You don’t have to do it just because you can and it’s very clever ...
Thank you It’s great to be here Jo Fitzpatrick Women’s Health Action Trust HINZ Conference: February 2008
Upcoming SlideShare
Loading in …5
×

Sacred Secrets Meet Cyberspace Privacy Issues for Consumers

922 views

Published on

Jo Fitzpatrick
Women’s Health Action Trust

Published in: Business, Health & Medicine
0 Comments
0 Likes
Statistics
Notes
  • Be the first to comment

  • Be the first to like this

No Downloads
Views
Total views
922
On SlideShare
0
From Embeds
0
Number of Embeds
20
Actions
Shares
0
Downloads
0
Comments
0
Likes
0
Embeds 0
No embeds

No notes for slide

Sacred Secrets Meet Cyberspace Privacy Issues for Consumers

  1. 1. Sacred Secrets Meet Cyberspace Privacy Issues for Consumers Jo Fitzpatrick Women’s Health Action Trust HINZ Conference: February 2008
  2. 2. Sacred Secrets Meet Cyberspace Is this a straw woman? 2006 Privacy Commission survey 78% concerned about confidentiality of medical records Second only to security of personal records on the internet
  3. 3. <ul><li>Cartwright was seminal </li></ul><ul><ul><li>WHA exposed the ‘Unfortunate Experiment and supported the women through the Inquiry </li></ul></ul><ul><ul><li>About : Informed consent and patient autonomy </li></ul></ul><ul><ul><li>Access to health records –huge number of health professionals had access, none of the women were told. Difficult to access records with permission and even if you were the women </li></ul></ul><ul><ul><li>Trust, respect and expectations </li></ul></ul><ul><ul><li>Effect: Change to widespread expectation and belief that doctors, health professionals and custodians of health information know best </li></ul></ul>Women’s Health Action and Health Information
  4. 4. <ul><li>Mid 1990’s – North Health and patient enrolment </li></ul><ul><li>Since 1996 –written regularly to MoH on NHI </li></ul><ul><li>1997 – put forward a nomination for the proposed Health Information Council – still waiting to hear the outcome of appt process </li></ul><ul><li>1997 – organised meetings on enrolment and NHI </li></ul><ul><li>1997 – met with NHIS to discuss concerns </li></ul><ul><li>Late 1997 – fed up & frustrated, we took a complaint to Privacy Commissioner. Result a report for Health Commissioner: Medical Record databases – Just what you need. </li></ul>Women’s Health Action and Health Information
  5. 5. <ul><li>Jan 1998 – took part in a review of NZHIS Governance arrangements </li></ul><ul><li>1998 – put in a submission to Procare doc – Policy and Procedure for the transfer of information from General Practice to other parties </li></ul><ul><li>Took part in a working party with Auckland GPs concerned about the use of the NHI </li></ul><ul><li>1999 – requested an update on the NHI from the NZHIS – nothing changed </li></ul>Women’s Health Action and Health Information
  6. 6. <ul><li>Submissions and consultations on WAVE report; NHIS Action zones; .health.nz proposal etc etc </li></ul><ul><li>Attendance at EHR conferences at own expense to update ourselves on what was happening </li></ul><ul><li>2006 – Testsafe : Representations to DHB & engagement with Northern region DHB Privacy Officers </li></ul><ul><li>2006 Cartwright lunch – 80 people on Inga’s research; went well over time </li></ul>Women’s Health Action and Health Information
  7. 7. <ul><li>Comment – Sandra Coney 2000 </li></ul><ul><li>Despite activity by WHA we feel </li></ul><ul><li>we have made negligible impact. </li></ul><ul><li>In almost all cases we have had to insert ourselves into the processes rather than be invited </li></ul><ul><li>Consultations and public meetings have been held at our cost and efforts to gain funding have met with refusal </li></ul><ul><li>Absence nationally of attempts to involve consumers </li></ul><ul><li>Comment – Barbara Robson 2008 </li></ul><ul><li>Progress on consumer engagement has been very slow </li></ul>Women’s Health Action and Health Information
  8. 8. <ul><li>2007 Committee appointment </li></ul><ul><li>2008 HISAC sponsored Consumer Forum </li></ul><ul><li>HINZ conference – speaker </li></ul>Women’s Health Action and Health Information
  9. 9. <ul><li>Proven Vulnerability – Cartwright; Health (Screening Amendments) Bill </li></ul><ul><li>Holders of sensitive health information </li></ul><ul><ul><li>Terminations and Reproductive health </li></ul></ul><ul><ul><li>Abuse and family violence </li></ul></ul><ul><ul><li>Higher mental health engagement </li></ul></ul><ul><ul><li>Gendered society – people make judgments on the basis of this information </li></ul></ul>Women and Health Information
  10. 10. <ul><li>What is contained in a personal health record? </li></ul><ul><li>Is the clinical relationship about me or an electronic record? </li></ul><ul><ul><li>Are they are accurate and adequate </li></ul></ul><ul><ul><li>Important that history taking and clinical examination relate to current consult </li></ul></ul><ul><ul><li>Judgments' based on social information/history –sexuality, personality; mental health status; employment status; HIV status </li></ul></ul><ul><li>Systems security and reliability: Is it my record/ information? Is it safe? </li></ul>Consumer Issues and concerns
  11. 11. <ul><li>Process of allowing or denying access involves a loss of privacy – no, you can’t see my abortion clinic, ACC sensitive claim or my Psychiatric clinic record </li></ul><ul><li>Barriers to access for vulnerable populations who fear disclosure </li></ul>Consumer Issues and concerns Access
  12. 12. Consumer Issues and concerns Access – Employers/Insurers/ACC <ul><li>Privacy Commissioner, Marie Schroff notifies the NZMA her office will investigate its concerns about insurer requests for patient notes. NZMA concerns: forwarding complete notes might result in non-relevant medical information being provided to insurers; and consent given by applicants or claimants may not be fully informed (NZ Doctor 11.07) </li></ul><ul><li>WHA examples – Income Protection claims refused </li></ul><ul><li>ACC cases to Privacy commission </li></ul><ul><li>Disclosure/Discussions with employers – PC Cases: medical certificates - seaman, women; mental health records; Positive women - HIV status disclosed by GP </li></ul>
  13. 13. <ul><li>CISCO network aims to connect 17,000 healthcare providers and Boards (The Business, 2007) </li></ul><ul><li>ADHB concerto gives ‘instant rapid access’ to 3,500 staff members (CMO David Sage, Nov 2007) </li></ul><ul><li>Testsafe </li></ul><ul><li>– 3 DHB’s have access; how many people is that; what are the safeguards ; who knows? </li></ul><ul><li>- who knows you can ‘opt-off’? Never seen any information or had the issue raised – GPs ;labs </li></ul><ul><li>Click of a button transferability – security in transit; and of transit </li></ul>Consumer Issues and concerns Ease of access/ transfer
  14. 14. <ul><li>Within the health system – FPA; Screening and cancer registers; </li></ul><ul><li>Across Government – ACC; Social Service Agencies; IRD </li></ul><ul><li>Outside agencies – drug companies in the US can monitor prescribing habits; Insurance companies </li></ul><ul><li>Accumulation of large amount of information is a worry </li></ul>Consumer Issues and concerns Data Matching
  15. 15. <ul><li>Don’t know what’s possible </li></ul><ul><li>Don’t know the extent to which it occurs already – Testsafe; PHOs/DHBs/MOH ; National Registers </li></ul><ul><li>Huge knowledge gap </li></ul>Consumer Issues and concerns Ease of access/ transfer
  16. 16. <ul><li>Comforted by the thought that access can now be audited </li></ul><ul><li>Concerns – occurs after the fact </li></ul><ul><li>Example: ADHB November 2007 </li></ul><ul><ul><li>3,500 had access </li></ul></ul><ul><ul><li>20 were disciplined for accessing celebrity records </li></ul></ul><ul><ul><li>1 was sacked </li></ul></ul><ul><ul><li>NO affected patients were told </li></ul></ul>Consumer Issues and concerns Access & Audit
  17. 17. <ul><li>We are not informed : huge gaps in knowledge </li></ul><ul><ul><li>NHI number (90% don’t know. Inga Hunter, 2006) </li></ul></ul><ul><li>Consumers feel constrained about compromising clinical relationships by enforcing prohibitions – enforced consent </li></ul>Consumer Issues and concerns Informed consent
  18. 18. Consumer Issues and concerns Future directions <ul><li>Advances in Genetic technology and its implications > Guthrie cards </li></ul><ul><ul><ul><li>> Information disclosure </li></ul></ul></ul><ul><ul><ul><li>(PC case on donor match) </li></ul></ul></ul><ul><li>Google ‘s Personal Health Record pilot (US 2008) </li></ul><ul><ul><li>Security of information </li></ul></ul><ul><ul><li>Offers frightening marketing possibilities </li></ul></ul>
  19. 19. <ul><li>Research – Inga Hunter </li></ul><ul><ul><li>Mapping the extent of the knowledge gap </li></ul></ul><ul><ul><li>Giving us some NZ research on consumer attitudes and variables that matter to us </li></ul></ul><ul><li>Consumers speaking for themselves </li></ul><ul><li>Consumer representation on HISAC </li></ul><ul><li>HISAC Consumer Forum </li></ul>Consumer Issues and concerns Some progress
  20. 20. <ul><li>Established a health information consumer network </li></ul><ul><li>Requested a consumer voice in health information forums and issues </li></ul><ul><li>Agreed a mechanism to ensure informed nominations to these </li></ul><ul><li>Accepted HISAC offer to facilitate ongoing 6 monthly consumer information network meetings </li></ul><ul><li>Asked that an NHI education campaign be considered as an urgent priority </li></ul>HISAC Consumer Forum – February 2008
  21. 21. <ul><li>It’s not about you – it’s OUR information </li></ul><ul><li>We have interests in common – it’s about us and our health </li></ul><ul><li>We are your primary customer: you can but shouldn’t do anything about us without us </li></ul>Startling Facts
  22. 22. <ul><li>We know you care – </li></ul><ul><li>that doesn’t give you the Machiavellian right to assume you know what’s best for us and do it in our best interests </li></ul>Startling Facts
  23. 23. <ul><li>Wholesale distribution/accumulation of personal health information is in and of itself a good thing </li></ul><ul><li>Sharing information automatically guarantees better care (Evidence base?) </li></ul><ul><li>Informed consent for the use of health information is way too hard </li></ul><ul><li>We are a risk management issue not a planning and integration issue </li></ul><ul><li>We are peripheral not central </li></ul>Some flawed assumptions
  24. 24. <ul><li>We are stupid </li></ul><ul><li>We don’t understand </li></ul><ul><li>We will say NO </li></ul><ul><li>We will say yes </li></ul><ul><li>AND </li></ul><ul><li>What we don’t know won’t hurt us </li></ul><ul><li>What we don’t know won’t hurt and hinder your dreams too </li></ul>Some flawed assumptions
  25. 25. <ul><li>Simple as </li></ul><ul><li>1,2,3… </li></ul>
  26. 26. <ul><li>Tell us </li></ul><ul><li>What you are doing </li></ul><ul><li>What you’d like to do </li></ul><ul><li>AND </li></ul><ul><li>Tell us why </li></ul>The KISS Solution 1?
  27. 27. <ul><li>Engage us in the conversations and planning </li></ul>The KISS Solution 2 ?
  28. 28. <ul><li>Find out what would allay our concerns if we have any </li></ul><ul><li>AND </li></ul><ul><li>Ask us for our blessing or consent </li></ul>The KISS Solution 3?
  29. 29. WHY 1? <ul><li>Because privacy is a basic human right </li></ul><ul><li>Health information privacy is the right to control the acquisition, uses, or disclosure of identifiable health data. Linda Ackerman, Privacy Activism Staff Counsel 2007 </li></ul>
  30. 30. WHY 2? <ul><li>Information protection is not just about security systems, swipe cards and passwords. IP is about something else: trust, respect and expectations. Bruce Slane, Privacy Commissioner, 15 July 1998 </li></ul>
  31. 31. WHY 3? Because the knowledge gap between us is at least as wide as the Cartwright gap was 20 years ago with the potential to do as much damage. Jo Fitzpatrick, 2008
  32. 32. <ul><li>Health Information Technology </li></ul><ul><li>You don’t have to do it just because you can and it’s very clever </li></ul><ul><li>Health Information Technology and Privacy </li></ul><ul><li>DO IT – Especially if you can and it’s very clever </li></ul>The last word
  33. 33. Thank you It’s great to be here Jo Fitzpatrick Women’s Health Action Trust HINZ Conference: February 2008

×