Patients' Views on Sharing EHRs

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Dr Inga Hunter
Massey University

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Patients' Views on Sharing EHRs

  1. 1. ‘ Caring and Sharing’ – The Quest To Develop a Strategy For Sharing Electronic Patient Records HINZ Seminar 24 July 2009, Auckland Dr Inga Hunter Senior Lecturer Department of Management, Massey University [email_address] Sharing personal health information: The patients’ views on the sharing of clinical records <ul><li>Prof. Tony Norris </li></ul><ul><li>Institute of Information and Mathematical Sciences </li></ul><ul><li>Dr Dick Whiddett </li></ul><ul><li>Department of Management </li></ul><ul><li>Dr Barry McDonald </li></ul><ul><li>Institute of Information and Mathematical Sciences Mr John Waldon </li></ul><ul><li>School of Maori Studies </li></ul>
  2. 2. HRC-funded Survey 2007/8 <ul><li>random calling of a New Zealand-wide sample of Telecom residential numbers </li></ul><ul><li>people aged 18+ years </li></ul><ul><li>sample 4000+ respondents with 5 vignettes each </li></ul><ul><li>giving 370 observations per vignette </li></ul><ul><li>respondents will be given different vignettes, systematically rotated to ensure all possible combinations are included </li></ul>
  3. 3. Structure of vignettes <ul><li><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> </li></ul>
  4. 4. Potential vignettes <ul><li>Initially 1092 potential vignettes </li></ul><ul><ul><ul><li>comprising 13 (person) x 4 (content) x 7 (reason) x 3 (identification) </li></ul></ul></ul><ul><li>Focus groups and researcher discussion led to: </li></ul><ul><ul><li>removal of non-controversial or nonsensical vignettes. </li></ul></ul><ul><ul><ul><li>for example, it was assumed that medical care would require a patient’s name and address (even if the patient gave an alias!). </li></ul></ul></ul><ul><ul><li>Reduction in the number of attributes </li></ul></ul><ul><ul><ul><li>change of person to role </li></ul></ul></ul><ul><ul><ul><li>combine doctor and nurse </li></ul></ul></ul><ul><ul><ul><li>allied health professional </li></ul></ul></ul><ul><ul><li>Addition of laboratory as a role </li></ul></ul><ul><li>Total number of scenarios was reduced to 58 </li></ul>
  5. 5. Anonymous with no information to link the record to you Your name and address Your medical record number, but no information about your name or address < type of identification detail > Improving the Health of New Zealanders Assess eligibility for financial assistance Care Quality Audit Financial Audit < reason for request > all your past medical history information about your current health problem < content of medical information > Community Health Worker Government Health Agency Private Insurer Health Professional* Laboratory staff Emergency Personnel Hospital Doctor/Nurse Allied Health Professional Health Administrator/Manager Pharmacist Researcher GP/Practice Nurse < person requesting information > Values Attribute
  6. 6. Example 1 <ul><li>A doctor or practice nurse working in a GP setting would like access to your notes which contain information relevant to your current health problem as part of the health care that you are receiving. The information about you would contain your name and address. </li></ul>
  7. 7. Example 2 <ul><li>A researcher would like access to your notes which contain all your medical history in order to improve the health of NZers. The information about you would only have your medical record number, they would have no information about your name or address. </li></ul>
  8. 8. Potential bias <ul><li>CATI methodology – land-line access </li></ul><ul><li>Age, gender, ethnicity </li></ul><ul><li>Contact with the health sector (# visits) </li></ul><ul><li>Difference between feeling uncomfortable about the situation but still agreeing for it to occur </li></ul><ul><li>Summary of health information only </li></ul><ul><li>Maori health provider </li></ul><ul><li>Sensitive health information </li></ul>
  9. 9. Provisional analysis <ul><li>Note: these results are preliminary and are subject to change with more respondents and with further analysis </li></ul>
  10. 10. <ul><li>Completed 1828 (total 4214) 33.8% </li></ul><ul><li>Declined 4579 66.2% </li></ul><ul><li>Female 65.75 % (total 67.6%) </li></ul><ul><li>Male 34.19% (total 32.4%) </li></ul><ul><li>4315 scenarios </li></ul>
  11. 11. Comfort and Agree <ul><li>Level of comfort with access to medical record (scale 1-10 = comfort score) </li></ul><ul><li>Agree to access to medical record (yes/no) </li></ul><ul><li>Also recorded ‘refused to answer’ / no answer </li></ul><ul><li>Wide variation in response, mean used in graphs </li></ul>
  12. 12. For each scenario
  13. 13. For an individual
  14. 14. <ul><li>Overall, the probability of Agree is 50% when the comfort score is 4.37. </li></ul><ul><ul><li>i.e. if they are scoring comfort at 6 out of ten, the vast majority will Agree. </li></ul></ul><ul><ul><li>If scoring comfort at 4 out of 10 the majority will Not Agree. </li></ul></ul><ul><li>Mean comfort score 6.3% overall </li></ul><ul><li>Mean Agreement level = 67.7% overall </li></ul>
  15. 15. <ul><li>~34% comfort level 10, ~98% agree </li></ul><ul><li>~14% comfort level 1, ~5% agree </li></ul><ul><li>~60% >comfort level 6, >80% agree </li></ul><ul><li>~41% agree to all scenarios presented </li></ul><ul><li>~6.5% not agree to any scenario </li></ul>
  16. 16. Clinical care
  17. 17. For Care Name and address
  18. 18. For Care Name and address
  19. 19. For Care Name and address Gender Role
  20. 20. For Care /Name & address Age group & Role
  21. 21. For Care /Name & address Age group & Role
  22. 22. For Care Name and address
  23. 23. For Care Name and address
  24. 24. For Care Name and address
  25. 26. For Care Name and address Chronic disease
  26. 27. For Care Name and address Chronic disease
  27. 29. For Care Name and address Sensitive Information
  28. 30. For Care Name and address Sensitive Information
  29. 32. Something ‘Sensitive’
  30. 33. For Care Name and address
  31. 34. For Care Name and address
  32. 35. Identification
  33. 38. For any reason
  34. 39. Overcome discomfort to agree
  35. 40. The respondent is most willing to overcome their discomfort when the enquirer is a hospital Dr/nurse or Ambulance Paramedic - or Researcher!
  36. 42. The oldest age group is most willing to overcome their discomfort and Agree. The youngest age group is least willing to agree even when actually quite comfortable.
  37. 43. Summary <ul><li>Support for sharing for clinical care </li></ul><ul><li>Sharing for non-clinical care to have name and address removed </li></ul><ul><li>Brief summary </li></ul><ul><ul><li>Clinical care provided by other than Dr/Nurse </li></ul></ul><ul><li>Chronic disease </li></ul><ul><ul><li>Minimal effect - variable </li></ul></ul><ul><ul><li>Mainly with 35-64 age group (reverses trend) </li></ul></ul>
  38. 44. Summary 2 <ul><li> % agreement with male, older age </li></ul><ul><li> % agreement with younger age </li></ul><ul><li>Having something considered sensitive </li></ul><ul><ul><li> all comfort scores/most agreement </li></ul></ul><ul><ul><li>35-64 yr age groups marked  agree with access </li></ul></ul><ul><ul><li><25 yr  agree with access </li></ul></ul><ul><li>Overcome discomfort to agree </li></ul><ul><ul><li>Hospital Dr/Nurse or Ambulance Paramedic - or Researcher! </li></ul></ul><ul><ul><li>Older age </li></ul></ul><ul><li>* – very preliminary analysis - initial results subject to change with more respondents and further analysis </li></ul>
  39. 45. Study Conclusions <ul><li>Acceptability of sharing PHI influenced by: </li></ul><ul><li>Degree of anonymity </li></ul><ul><ul><ul><li>Recipient </li></ul></ul></ul><ul><ul><ul><li>Content </li></ul></ul></ul><ul><ul><ul><li>Purpose </li></ul></ul></ul><ul><ul><ul><li>Location </li></ul></ul></ul><ul><li>Education and empowerment </li></ul><ul><li>Potential for loss of trust and worse health outcomes </li></ul>
  40. 46. Where to next? <ul><li>Wider team based care </li></ul><ul><li>Meaning of NHI / unique identifier </li></ul><ul><li>Multi-agency sharing </li></ul><ul><li>Trust </li></ul><ul><li>‘ Safe’ sharing </li></ul><ul><li>Why and how? </li></ul><ul><li>Health Informatics Journal </li></ul><ul><li>The Journal on Information Technology in Healthcare </li></ul>
  41. 47. <ul><li>Thank you </li></ul><ul><li>Any questions? </li></ul>

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