People, health professionals and health information Working together in 2014
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This document discusses consumer perspectives and concerns regarding personal health information and health IT. It notes that consumers want health information that supports informed decisions, and they have concerns about privacy, security, and how information may be used and shared without their consent. The document also outlines recommendations from a consumer forum to ensure community understanding and support for appropriate electronic health information use.
People, health professionals and health information Working together in 2014
- 1. People, health professionals and health information Working together in 2014
- 2. Health IT in the community HINZ conference 2010 Age
- 3. What do health consumers want? Information that supports them to make informed decisions about their health and their medical treatment. Information needs to be Specific Relevant Clear Understandable Evidence based Free from vested interests or be clear about these
- 4. Personal health information 2006 Privacy Commission survey 78% concerned about confidentiality of medical records Second only to security of personal records on the interne t
- 5. Proven Vulnerability – Cartwright; Health (Screening Amendments) Bill Holders of sensitive health information Terminations and Reproductive health Abuse and family violence Higher mental health engagement Women and Personal Health Information
- 6. What is contained in a personal health record? Is the clinical relationship about me or an electronic record? Are they are accurate and adequate Are they relevant – do they relate to the current consult Will I be judged on the basis of the information in ways that will affect my treatment - social information/history –sexuality, personality; mental health status; employment status; HIV status Systems security and reliability: Is it my record/ information? Is it safe? Consumer Issues and concerns
- 7. 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 Barriers to treatment access for vulnerable populations who fear disclosure Consumer Issues and concerns Access
- 8. Consumer Issues and concerns Access – Employers/Insurers/ACC 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) WHA examples – Income Protection claims refused ACC cases to Privacy commission Disclosure/Discussions with employers – PC Cases: medical certificates - seaman, women; mental health records; Positive women - HIV status disclosed by GP
- 9. CISCO network aims to connect 17,000 healthcare providers and Boards (The Business, 2007) ADHB concerto gives ‘instant rapid access’ to 3,500 staff members (CMO David Sage, Nov 2007) Testsafe – 3 DHB’s have access; how many people is that; what are the safeguards ; who knows? - who knows you can ‘opt-off’? Never seen any information or had the issue raised – GPs ;labs Click of a button transferability – security in transit; and of transit Consumer Issues and concerns Ease of access/ transfer
- 10. Don’t know what’s currently possible Don’t know the extent to which it occurs already – Testsafe; PHOs/DHBs/MOH ; National Registers Consumer Issues and concerns Ease of access/ transfer
- 11. Within the health system – FPA; Screening and cancer registers; Across Government – ACC; MSD; lRD Outside agencies – drug companies in the US can monitor prescribing habits; Insurance companies Accumulation of large amount of information is a concern Consumer Issues and concerns Data Matching
- 12. Great that access can now be audited Concerns – occurs after the fact Example: ADHB November 2007 3,500 have access 20 were disciplined for accessing celebrity records 1 was sacked NO affected patients were told Consumer Issues and concerns Access & Audit
- 13. We are not informed : huge gaps in knowledge NHI number (90% don’t know. Inga Hunter, 2006) Consumers feel constrained about compromising clinical relationships by enforcing prohibitions – enforced consent Consumer Issues and concerns Informed consent
- 14. Consumer Issues and concerns Future directions Commercial Personal Health Records eg (Google, Microsoft etc) Security of information Offers frightening marketing possibilities
- 15. Factors driving health IT changes Increasing emphasis on personal responsibility Increasing focus on medical care as a partnership Increasing prevalence of long term conditions Emphasis on better , sooner, more convenient care Expectation from consumers that relevant health info will be there when it’s needed by health professionals People have a high level of interest in their own health information and a desire to be active partners Health IT changes offer opportunities for variety of engagement and more convenient care – from making appointments; emailing/texting health professionals; seamless referrals ; shared care plans with consumers as active partners
- 17. HISAC Consumer Forum First Forum in February 2008 because some identified consumer advocates felt the need for a wider reference group. Aim to provide an opportunity for consumer groups and advocates to come together to advise HISAC on community engagement and consumer issues arising from the health care environment. Expressions on interest went out to consumers and their networks – including Consumer Affairs network; groups who had submitted on health information; people with a known interest. 50 people at the first Forum. Active participation and support from HISAC, Privacy Commission and HDC Currently communicate via a google group
- 18. Safe Sharing of Health Information
- 19. Forum views The forum believed that a consumer awareness programmes are required prior to engaging on safe sharing of health information The engagement needs to include health professionals as well as the community
- 20. Forum Recommendations Add consumer leadership as a driving priority alongside clinical leadership at the front line The Forum would like to continue to contribute to and monitor and evaluate the engagement process that is implemented A project to scope the current uses of health information to provide an ongoing reference and resource on current use for health professionals and the community Run simultaneous research into the effectiveness of sharing electronic health records.
- 21. Conclusions Ensure community understanding and support for appropriate use of, and access to, electronic personal health information. Clinicians are integral to the development and ongoing use of personal health information solutions. People need access, power and control over their health records. Consumer concerns are well canvassed and the solutions are well within our capacity. The National Health IT Plan is achievable and an excellent path to the future
- 22. Challenges for achieving the 2014 Vision Move people to the centre of patient-centred health care supported by IT, health professionals and health managers. Move from patients to people, embrace their complexity and support their role as the primary partner. They are the only constant across the patient journey.
- 23. Challenges for achieving the 2014 Vision Leadership, Governance and Engagement are vital to achieving the e-health vision The secret to community Leadership, Governance and Engagement lies with the NGO sector We also need to ‘grow’ consumer initiatives which foster and support consumer Leadership, Governance and Engagement
Editor's Notes
- #3: Health information need increases as use of medical services increases Boomers are reaching the age where health concerns are kicking in Older people generally more motivated and often better informed – it matters more! Sources of information and information gathering techniques differ – younger people more skilled at use of the internet Disability is also a factor and often increases with increasing age. Disability increases the need for health information but is often associated with dissatisfaction with information available
- #16: Demand for health information is insatiable – huge industry in convincing people that books. Videos, drugs, potions and food will help you live longer with a better quality of life Health professional used to be the prime/sole trusted provider
- #19: Primary Health Care Strategy: Key Directions for the Information Environment identified the importance of stakeholder and community involvement 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 Minister of Health provided with proposals for different approaches to a nationwide stakeholder and community engagement exercise. The Minister asked that the HISAC Consumer Forum provide him with options at minimal cost 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 This was then shared with the other members of the consumer forum and comments were taken on board prior to finalising the paper