Bringing theElectronic Health Record to Life - a Consumer Perspective Ernie Newman,Chair, National IT Health Board Consumer Panel Presentation to HINZ Seminar 21 June 2012 PREPARED BY
Agenda • Health – the strategic challenges • The National Health IT Plan • A personal “Shared Care Record” for everyone by 2014 • The massive benefits of Shared Care Records • The unique sensitivity of personal health information • Essential elements of a privacy regime that will ensure the trust of the public • Other Consumer Issues
Health – the strategic challenges• Massive advances in medical technology• Aging population – health workforce included• ….leading to unprecedented expectations of health services and budgets• BUT enormous potential for ICT-based solutions:EXAMPLES: On line personal health data, consultations byvideo/telephone/email, remote monitoring, better self-management throughinformation, safe support of older people in their own homes for longer,reduced hospital admissions, devolution of care from secondary to primary tocommunity…………….
The National Health IT Plan • Aiming for interoperability among multiple IT systems across 20 autonomous DHBs, thousands of GP and specialist practices, and related sources, so that Shared Care Records can draw on the data they contain. • Very ambitious undertaking, across a disparate sector where the government has to coerce rather than control. • Diversity of software vendors an added complication. • BUT it is working thus far.
A personal “Shared Care Record” for everyone by 2014 • A set of core health information • Accessible by every clinician we deal with, irrespective of the setting • Accessible to ourselves • Including some/all of: Clinical notes, test results, radiography, list of medications, allergies, referrals/discharges, etc etc…… • Expectation the scope of the data will grow over time
The Massive Benefits of Personal Health Records On Line • Better care arising from better-informed professionals • More self-care arising from better informed patients – wellness as well as health • Opens door for more effective ways to deliver health services • Typical consumer reaction: • “You mean you’re not already doing this?”
The unique sensitivity of personal health information • Health information is inherently confidential to the consumer themselves, the health professional(s) who need to know, and whoever else the consumer chooses to disclose it to. • Different information may be more or less sensitive depending on circumstances, but that is each consumer’s choice. • Government, or whoever stores and controls the data, does not “own” it, nor are they free to use it randomly.
Privacy is a non-negotiable show-stopperbut it can and must bemanaged
Some essential elements of a privacy regime that will ensure the trust of the public:• GOVERNANCE: Every database that contains consumers’ personal health data, whether at national, regional, or practice level, should be governed under a formal process that is transparent, rigorous, subject to independent external scrutiny, and includes identifiable consumer representation.• TRAINING: Before any person is given log-in access to any database containing consumers’ personal health data, they will first be trained in the sensitivity around the data and the penalties for misuse, and will sign an approved confidentiality undertaking.• ACCESS SAFEGUARDS: There must be appropriate degrees of role-based access, supported by organisational cultures that respect the sensitivity of people’s data and the trust implied in its storage. People will see who has accessed their records.• LEGAL SANCTIONS: Meaningful legal sanctions must be thereto deter and punish any deliberate misuse of data in a way that would offend a reasonable person.
Current State: GOVERNANCE: Every database that contains consumers’ personal health data, whether at national, regional, or practice level, should be governed by a formal process that is transparent, rigorous, subject to independent external scrutiny, and includes identifiable consumer representation. • Currently there is no single body or agency responsible for information governance across the health sector • To fill this gap a comprehensive Information Governance Framework has been developed by the National Health IT Board • Initially compliance will be voluntary, parts incorporated into HISO standards.
Current State:TRAINING: Before any person is given log-in access to any databasecontaining consumers’ personal health data, they will first be trained in thesensitivity around the data and the penalties for misuse, and will sign anapproved confidentiality undertaking.This is work in progress. This will need to cover every employer or organisationwhere there are people with access – DHBs, medical practices, IntegratedFamily Health Centres, specialists, testing laboratories, pharmacies, etc.
Current State:ACCESS SAFEGUARDS: There must be role-based access, supported byorganisational cultures that respect the sensitivity of people’s data and thetrust that is implied in allowing the organisation to store it. People will seewho has accessed their records.Work in progress. There is a long way to go before role-based access isimplemented across the whole health system.However, there is general recognition of the importance of role-based accessacross the sector.There is also wide understanding of the need for consumers to see who hasaccessed their record – this will deter inappropriate access and reassureconsumers.
Current State:LEGAL SANCTIONS: Legal sanctions will be in place to deter and punishany deliberate or careless misuse of personal health data in a way that wouldoffend a reasonable person.This is currently the weak link:• Consumer Panel compiled a list of hypotheses• ACC, and Bronwyn Pullar issue, focussed us further• Reviewed the position with an inter-ministry legal group; concluded there is a major gap in protection of data that escapes from a database• Working to have this addressed in review of Privacy Act S56• Optimistic of resolution, but if that solution does not work another must be found urgently
Other “Consumer” Issues• Patient Portals• Accessibility• Access by/on behalf of young (and old)• Off the record consultations