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Safe Sharing of Health Information

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Publicada em

Graeme Osborne, Jo Fitzpatrick
Health Information Strategy Action Committee
(2/10/09, Forum, 7.45)

Publicada em: Saúde e medicina, Educação
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Safe Sharing of Health Information

  1. 1. Safe Sharing of Health Information Health Information Strategy Advisory Committee Graeme Osborne and Jo Fitzpatrick
  2. 2. Context <ul><li>Primary Health Care Strategy: Key Directions for the Information Environment identified the importance of stakeholder and community involvement </li></ul><ul><li>Safe sharing of health information is a critical enabler of a more integrated model of health care with a person-centred, provider friendly health information environment </li></ul>
  3. 3. Approach <ul><li>Minister of Health provided with proposals for different approaches to a nationwide stakeholder and community engagement exercise. </li></ul><ul><li>The Minister asked that the HISAC Consumer Forum provide him with options at minimal cost </li></ul>
  4. 4. The Process <ul><li>A group decision process facilitated by Dr Richard Norman at Victoria University which supported a self-selected sub-group of 12 people to develop their proposal </li></ul><ul><li>This was then shared with the other members of the consumer forum and comments were taken on board prior to finalising the paper </li></ul>
  5. 5. This morning’s exercise <ul><li>At the table: </li></ul><ul><li>Each group to provide two answers to a question. </li></ul><ul><li>These answers will be collated and then the room will “score” the answers </li></ul><ul><li>The answers and the rank score will then be compared with those given by the forum </li></ul>
  6. 6. Questions <ul><li>What control should consumers have over their health information? </li></ul>
  7. 7. Scoring <ul><li>Score each answer </li></ul><ul><li>(1) Strongly Disagree </li></ul><ul><li>(2) Disagree </li></ul><ul><li>(3) Agree </li></ul><ul><li>(4) Strongly Agree </li></ul>
  8. 8. Answers 1 2 3 4 R
  9. 9. Answers 1 2 3 4 R
  10. 10. Answers 1 2 3 4 R
  11. 11. Answers 1 2 3 4 R
  12. 12. Answers 1 2 3 4 R
  13. 13. What control should consumers have over their health information ? <ul><li>1. Health consumers should know how and why their information is being used (0 0 2 9) </li></ul><ul><li>2. People should expect to have unimpeded access to their personal health information, the ability to authorise access for others and the means to review information on who has accessed their information and why this was done. (0 0 2 8) </li></ul><ul><li>3. Consumers should never be asked to pay to manage their own information (0 1 1 9) </li></ul><ul><li>4. Consumers should be allowed to discuss which parts of their health information record should be available and which parts can be closed off at their behest. (0 0 6 5) </li></ul><ul><li>  </li></ul>
  14. 14. What control should consumers have over their health information? <ul><li>5. Consumers should be made aware of why this info is needed, how & where this info will be used. Also, the consumer shall have full RIGHT to rectify the info at any point of time. Also, there should be a provision for the consumer to have a consent form with the latest print out or summary of the info every time they visit the health provider. (0 0 5 5) </li></ul><ul><li>6. Consumers should be able to access their information, check that the information is correct, have the ability for incorrect statements to be deleted. (0 0 5 6) </li></ul><ul><li>7. Consumers should have opportunity to discuss how they would like their information recorded and whether it may be used for other purposes ie statistical purposes (0 1 3 7 ) </li></ul>
  15. 15. Wha control should consumers have over their health information <ul><li>8. The amount of control that enables me to give it, share it, remove or edit it when it is identifiable to me and the knowledge of what it is going to be used for when it is encrypted or unidentifiable. (0 1 3 7) </li></ul><ul><li>9. Consumers should easily be able to find out what use is being made of information about them on a national or regional level (0 2 3 6) </li></ul><ul><li>10. Consumers should have full control over their health information. This can only be achieved by raising the level awareness, understanding and will lead onto their &quot;trust&quot; in the system (0 1 6 4 ) </li></ul>
  16. 16. Why is it important to engage the public in discussion/debate? <ul><li>1. To maintain accountability (0 0 3 8 )] </li></ul><ul><li>2. Engaging is very important from a public health perspective. NZ follows the Ottawa Charter of Public Health and the prime component of the charter is community engagement and empowerment, plus to provide supporting environment. It will be highly ethical to engage consumers, community and families. (0 0 4 7 ) </li></ul><ul><li>3. To maintain transparency (0 1 2 8 ) </li></ul><ul><li>4. To ensure that people know what is happening with their information and can participate in the debates on its use (0 0 6 5 ) </li></ul><ul><li>5. To prevent wasting time and money by creating elaborate systems that fail and founder due to lack of consumer/provider trust (see: UK NHS national electronic health records system) ( 0 0 5 6 ) </li></ul><ul><li>  </li></ul>
  17. 17. Why is it important to engage the public in discussion/debate? <ul><li>6. Because health information is a tool which allows people to monitor and manage their health. If we share the information and work together with health professionals we can all be disgustingly healthy and save the government from spiraling health costs (0 0 5 6 ) </li></ul><ul><li>7. To remove the concept that professionals know best and instill another, that is 'I know best'. (0 1 4 6 ) </li></ul><ul><li>8. Secure buy in (0 1 4 6) </li></ul><ul><li>9. The right to fully participate in how their own health information is managed will contribute to safer outcomes for that consumer (0 1 5 5) </li></ul><ul><li>10. To assist with future planning needs of health sector (0 1 6 5) </li></ul><ul><li>  </li></ul>
  18. 18. What are the major benefits of information sharing? <ul><li>1. At a consumer level it can mean that if my information is shared between providers I may not have to 'tell my story' over and over again. (0 0 4 6) </li></ul><ul><li>2. Consumers have increased opportunities to learn about health, wellbeing and any illnesses so they can better understand and manage their own health - increased level of self-responsibility and self management (0 0 4 6) </li></ul><ul><li>3. Consumers and providers know what's going on with their health and with their health information (0 0 5 5) </li></ul><ul><li>4. Prevent waste from unnecessary tests and repeat collection of health information (0 0 5 5 ) </li></ul><ul><li>5. health promotion and protection, reducing health risk (0 0 5 5 ) </li></ul>
  19. 19. What are the major benefits of information sharing? <ul><li>6. Awareness raising, informing people of your services growing peoples knowledge (0 0 6 4 ) </li></ul><ul><li>7. A 'patient journey' through the health system where people and information arrive at the right place at the right time for minimum fuss and maximum benefit (0 0 6 4 ) </li></ul><ul><li>8. Reduced repetition and paper work (0 0 6 4 ) </li></ul><ul><li>9. A way to learn from our previous mistakes. (0 0 6 4 ) </li></ul><ul><li>10. More effective treatments; better use of skilled time; no need to tell the same facts over and over (0 1 4 5 ) </li></ul>
  20. 20. Forum views <ul><li>The forum believed that a consumer awareness programme was required prior to engaging on safe sharing of health information </li></ul><ul><li>The engagement needed to included health professionals as well as the community </li></ul><ul><li>Use of existing networks would be a cost effective way of engaging </li></ul>
  21. 21. Forum Recommendations <ul><li>Add consumer leadership as a driving priority alongside clinical leadership at the front line </li></ul><ul><li>The Forum continues to monitor and evaluate the engagement process that is implemented and the actioning of any recommendations made </li></ul><ul><li>A project to scope the current uses of health information with a view to providing this as an ongoing resource that provides information and transparency on current use </li></ul><ul><li>To run simultaneous research into the effectiveness of sharing electronic health records . </li></ul>
  22. 22. Questions <ul><li>Why is it important to engage the public in discussion / debate / dialogue? </li></ul>
  23. 23. Answers 1 2 3 4 R Consumers need to manage who has access and what for and be educated into implications of not sharing 7 21 24 2 Consumers should know who has seen their record and have the ability to mark items as confidential 5 11 33 5 Where written in conjunction with consumer and agreed, their health information should be in their control completely and to the extent that they know who is looking at their notes and what they are doing with the information and can correct errors Consumers should have supported access 0 3 46 15 Consumer should have easy access to their own information 0 0 10 44
  24. 24. Answers 1 2 3 4 R Consumers should be able to see who accessed their information Full informed control (with realism) General control but with limitations and exceptions Should have control but there will be circumstances where that will be over-ridden Consumers should have the right to consent to what information is released. Consent should be timebound and refreshed Treating clinicians require complete access to information – if that requires “break glass” model so be it
  25. 25. Answers 1 2 3 4 R Consumers should have control over what medical knowledge is used to augment their health record e.g. latest treatment information eg latest treatment information for diabetes on-line forums for chronic diseases Consumers cannot change records but can add to their own View all including child protection alerts Control should be at the consumers choice based on a contract with primary care provider and other care professionals
  26. 26. Questions <ul><li>What are the benefits of sharing health information </li></ul>