It Really Is Just A Farce How The ADHA Is Being Run. It Needs Urgent And Meaningful Repair!

First we need a bit of background. Take this partial page:

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Board Papers

The intent of the Australian Digital Health Agency Board (Board) is to publish as many Board documents as is feasible. Generally Board papers are published after the minutes for that meeting have been accepted. This is usually at the next Board meeting. When clarification or correction of the minutes is required, publication of the Board papers may be delayed.

Board documents that are draft, not finalised or sensitive will not be published.

Board Meeting 6 December 2018 – Board Papers (Download)

• Item 4 - CEO Report, December 2018 (PDF, 602KB) and Word format, 122KB
• Item 16 - My Health Record in Emergency Departments - project update (PDF, 531 KB) and Word format, 107KB
• Item 17 - DHS and OAIC Annual Reports on digital health activities 2017-18 (PDF, 562KB) and Word format, 143KB
• Item 19 - MHR performance statistics (PDF, 512KB) and Word format, 96KB

Board Meeting 22-23 August 2018 – Board Papers (Download)

• Item 3 - CEO Report - August PDF, 156kB or Word format, 88kB
• Item 6 - Digital Health Test Beds - August PDF, 574kB or Word format, 1028kB
• Item 13 - Corporate Plan 2018-19 - August PDF, 227kB or Word format, 88kB
• Item 17 - My Health Record performance statistics - August PDF, 142kB or Word format, 90kB

Board Meeting 14 June 2018 – Board Papers (Download)

• Item 3 - CEO Report - June 2018 PDF, 130kB and Word format, 87kB
• Item 6 - My Health Record in Emergency Departments - second phase - June PDF, 188kB or Word format, 86kB
• Item 10 - Organisational Excellence update - June PDF, 187kB or Word format, 89kB
• Item 19 - Commonwealth Procurement Rules update - June PDF, 197kB or Word format, 272kB
• Item 23 - MHR performance statistics - June PDF, 125kB or Word format, 89kB

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Here is the link:

https://www.digitalhealth.gov.au/about-the-agency/australian-digital-health-agency-board/board-papers

There are a few things to note here:

1. The Board was on auto-pilot while most of the opt-out saga was happening! Clearly it was a matter of supreme indifference to them. The did not apparently meet for a crucial 4 months – against the usual 2 monthly meeting schedule.

2. The papers are totally incomplete and even those that are provided are often missing important parts. See Item 19 in the latest lot – missing the crucial appendix.

3. When December rolls round – that we get to hear about months later – the tone is that all the discussion regarding opt-out is wonderful.

This extract from the CEO Report  – when read closely shows just how startled they were:

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My Health Record

On 14 November, the Hon Greg Hunt MP, Minister for Health (the Minister) agreed to extend the opt out date to 31 January 2019 —  a milestone in the high profile and welcome debate about the role that My Health Record (MHR) and digital health more generally can play to support improved health and wellbeing in Australia.

If we look back on the really major reforms of the past 40 years, they have happened with considerable community interest and debate, with the engagement of all political parties, and frequently involved modification as a result. This is healthy civic and political democracy at work — and a signal of the importance of MHR as a reform.

On 15 November, the Senate passed the My Health Records Amendment (Strengthening Privacy) Bill 2018
(the Bill). The Bill will need to go back to the House of Representatives, which sits again on 26 November 2018. If passed by the House of Representatives in its current form, it will then be assented and become law.

A key operational change is the extension of the opt out period to 31 January 2019 in light of the legislative timetable. We are currently working through the nature of the Australian Digital Health Agency’s (the Agency) activities during this extension and will update you when those plans have been clarified. It is important to note that if the legislation is enacted, it will mean that people can permanently delete their MHR at any time after 31 January 2019 — in effect, to opt out at any point thereafter. The Agency will continue to support community awareness and understanding of MHR as well as explain the implications of the legislative changes while improving provider connections and clinical adoption of the service.

 There are a number of amendments in the Bill that strengthen MHR’s privacy and security protections:

Briefly, the changes will:

•  confirm the current Agency policy that law enforcement agencies can only obtain access with a court or similar order;
• confirm the prohibition on access to MHRs for insurance or employment purposes within the My Health Record Act 2012;
•  remove parents as authorised representatives when a child turns 14 — meaning they will not have default access to that child’s MHR unless given express approval to do so by the record recipient;
• strengthen existing protections for people at risk of family and domestic violence;
• allow Australians to permanently delete their records, and any backups, when they cancel their record;
• clarify that the Agency cannot delegate its powers to anyone other than the Department of Health (Health) and the Chief Executive of Medicare;
• make clear that the system cannot be privatised or used for commercial purposes; and
• make the principles contained in the Framework to guide secondary uses of data law.

This will be backed up by harsher penalties and fines for inappropriate or unauthorised use.

The legislation and record of the debate is available on the Australian Parliament House website.

Budget Estimates

On 24 October 2018, the Agency appeared alongside Health for Additional Budget Estimates. We were asked a number of questions regarding MHR, focusing on the communications activities, making system changes to give effect to hard delete, and some of the clinical and consumer feedback received by the Senate Committee on the MHR system.

Consumer communications

Consumer communications and engagement has been significant during the opt out period, covering numerous channels including, but not limited to, print, video, radio, social media, digital, community events and a television campaign. Key communication materials have been translated into over 19 languages, including several Indigenous languages. These activities have given more than 10 times reach across the eligible population, which includes temporary and permanent residents as well as Australian citizens.

The focus of resources and communication activities based on research, has been to educate Australians and their trusted healthcare providers about MHR and how it benefits them, and to inform Australians that they will get a record in 2019 unless they choose not to have one.

Information has been made available in over 15,000 health care locations including general practices (GP), pharmacies, public and private hospitals, and via Aboriginal Medical Services and National Aboriginal Community Controlled Health Organisations. Australia Post has provided information on MHR via over 4,000 post offices, including over 2,000 rural and remote locations, reaching up to two million Australians over the three month opt out period. MHR information has been included in all Medicare letters sent out during the opt out period, and information is also available at libraries nationally.

Hundreds of national and local advocate organisations — the Consumers Health Forum of Australia among them — are also promoting awareness through their networks. 31 Primary Health Networks (PHN) have conducted more than 3,200 community events during the opt out period.

Awareness and education has continued across the country for registered health practitioners, in partnership with clinical peak bodies, such as the Royal Australian College of General Practitioners (RACGP), the Pharmacy Guild and Pharmaceutical Society of Australia (PSA), PHNs, jurisdictions and private providers.

The primary focus of media reporting has continued on the security and privacy of the system, the protections in legislation around third-party access to records, particularly by law enforcement agencies, and subsequently the Minister’s announcement of the proposed amendments to legislation.

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You could be forgiven for asking just why all this was not properly consulted in advance, rather than having two forced extensions of opt-out as public annoyance rose.  The move to full record deletion on request is a major change to the whole Program and has gone rather unremarked. The Agency clearly misread the public mood for having large scale change sprung on them!

The CEO Report is an attempt as retrospective history revision and backside covering in my view. As for the ADHA Board the wholesale change seen recently was months too late!

What do others think?

David.