Quote Of The Year

Quote Of The Year - Paul Shetler - "Its not Your Health Record it's a Government Record Of Your Health Information"

Tuesday, August 16, 2016

I Think We Are Going To Need To Keep A Close Eye On The New CEO Of The ADHA. He Has A Clean Slate Here He Needs To Exploit For All Of Us!

This popped up just before I fell ill.

Appointment of CEO for the Australian Digital Health Agency

Minister for Health, Sussan Ley, has announced the appointment of Mr Tim Kelsey as the Chief Executive Officer of the Australian Digital Health Agency which is responsible for all national digital health services and systems.
 Page last updated: 01 August 2016
PDF printable version of Appointment of CEO for the Australian Digital Health Agency - PDF 337 KB

1 August 2016

Minister for Health, Sussan Ley, today announced the appointment of Mr Tim Kelsey as the Chief Executive Officer of the Australian Digital Health Agency which is responsible for all national digital health services and systems, with a focus on engagement, innovation and clinical quality and safety.

“Most importantly, the new Agency is the system operator for the Government’s recently launched My Health Record System which is a secure, online summary of people’s health information that can be shared with doctors, hospitals and healthcare providers with the permission of patients. This gives people more control of their health and care and with access to new digital apps and online services the Australian community is benefiting from the modern information revolution,” Minister Ley said.

“I am, therefore, delighted to announce that following an extensive national and international search Mr Tim Kelsey has accepted the permanent role of CEO to head up of the Australian Digital Health Agency. He is internationally regarded as a leader in digital health, in both the private and public sectors, and has a proven track record in delivery of digital health services.”

Ms Ley said that previously Mr Kelsey was the first National Director for Patients and Information in NHS England. This role combined the functions of chief technology and information officer with responsibility for patient and public participation, marketing, brand and communications for the national commissioner for health and care services. He was also the first chair of the National Information Board in England which successfully oversaw design of a new digital health strategy for the NHS.

Before becoming a director of NHS England, he designed and launched NHS Choices website – the national online information service which has transformed access to apps and mobile digital services for patients and citizens in England. In 2000, he co-founded Dr Foster, an organisation which pioneered public access to online information about local health services.

More recently, Mr Kelsey has been working with Telstra Health to focus on ways to use its technology capabilities to support transformation in the costs and quality of healthcare in Australia.

‘He is the right choice for the appointment as CEO of the Australian Digital Health Agency to further the Australian Government’s commitment to use digital health to create a world-class health system for all Australians,” Minister Ley said.

Mr Kelsey will commence in his new CEO role with the Australian Digital Health Agency in mid-August 2016.

Media contacts: Troy Bilsborough – 0427 063 150 Steve Block - 0428 213 264
Here is the link:
There are two useful articles to consider on all this:
First we have:

Care.data: gone but not forgotten

Care.data has been officially dead for more than a month, but its legacy is far from buried. Ben Heather takes another look at the fine detail of the Caldicott report that officially killed the programme and what it could mean for the future of sharing and handling of patient data.
On 19 July, with the nation’s eyes on the long-awaited Chilcot Iraq inquiry report, the end of the controversial care.data programme barely rated a mention.
The programme that damaged public confidence in the government’s handling on their personal health information died quietly.
The recommendations contained in the report that killed it, National Data Guardian Dame Fiona Caldicott’s review into health data security and patient consent, caused barely a ripple.
But as the summer window for public consultation on the recommendations rolls on, concerns are surfacing that care.data, or at least its ambition, are still alive and kicking.
While the report’s recommendations on greater data security and information governance have been lauded, the position on opt-outs and data collection have started to attract attention and some familiar concerns.
Sharing concerns
One dramatically worded online petition doing the rounds at the moment claims the government is now attempting “privatisation of your medical records, but this time without even telling us”.
More sober analysis from clinicians and privacy groups doesn't go that far, but does reveal worries that parts of care.data will endure at NHS Digital [until 1 August the Health and Social Care Information Centre], but with less opportunity for patients to opt out and weaker oversight.
They point to recommendations around data sharing, consent and opt-outs in Dame Fiona’s report, most of which the government has already indicated it is likely to back.
Retired GP Mary Hawking, who sat on the now disbanded general practice extraction service independent advisory group, says some of the Dame Fiona’s proposals would give NHS Digital wider discretion to gather and use confidential patient data.  
“There doesn’t seem to be anyone independent at all looking at how HSCIC [now NHS Digital] uses whatever data they chose and use it however they chose. They just had to say it is de-identified,” Hawking says.
Hawking says de-identifying data is “incredibly difficult” and became even more so as more and more de-identified data was linked and shared, potentially exposing patient’s sensitive health records.
Phil Booth, co-founder of privacy campaign group medConfidential, raises a similar point, arguing that much of the so-called anonymised data sent out to third-parties now is not fully anonymised, with a patient identity easily uncovered.
He says while the care.data brand is gone, the programme to gather and share a wider range of patient’s confidential health information is very much alive. “Care.data has crashed but the policy remains; they still want that data,” he says.
Dame Fiona’s report also recommends going further than care.data, removing the patients’ right to opt-out of this central collection altogether, he adds.
“HSCIC [NHS Digital] needs to be perfect if we don’t want to give people an opt-out. The opt-out is ultimate protection.”
Responding to question from Digital Health News, NHS Digital says all gathering of patient data is now, and will be in the future, subject to legal oversight.
This includes scrutiny by the standardisation committee for care information, which oversees the collection of data, and the data access advisory group, which oversees requests for data.
What information might be gathered and shared in future will be dependent on the outcome of consultation, the statement says. “It is vital that there is a full consultation and dialogue with the public and professionals before any implementation of the recommendations can take place.”
Lots more here:
Second we have:

Australia hires former head of controversial UK care.data plan

Tim Kelsey to head new Digital Health Agency

The Australian government's love affair with digitisation experts from the United Kingdom continues, with former National Health Service (NHS) digital head Tim Kelsey made boss of the antipodean Digital Health Agency (successor to the National e-Health Transition Agency).
The leave moves Telstra Health shy a director, since that was Kelsey's destination when he announced his resignation from the NHS in September 2015.
Kelsey quit the NHS after several years in charge of its highly-controversial care.data program, an data sharing operation that was criticised as privacy-invasive.
In 2014, he went on the record saying that “"no one who uses a public service should be allowed to opt out of sharing their records. Nor can people rely on their record being anonymised.”
The system was so popular among doctors that its bosses started switching from carrot to stick in 2014, saying laggards would have funding withheld.
By August 2015, a Cambridge University study noted care.data's failings: “mismanagement and miscommunications, inadequate protections for patient anonymity, and conflicts with doctors”. The boffins opined that requiring patients to opt-out was “unsuitable” and said there was a risk “to the trust between patients and general practitioners”.
More here:
Just a few comments:
First I hope Mr Kelsey is clear just how different GP in Australia and the UK is – especially with regard to contract obligations and private management.
Second I hope we will see proper public Privacy Impact Assessments on all new ADHA initiatives.
Third I hope he becomes an expert on all the reports done on NEHTA and understands just how different an organisation ADHA needs to be from NEHTA in terms of communication, stakeholder trust, communication and engagement as well as providing a dramatic improvement on transparency and openness.
I wish him great success and for him to fully deliver on the reasonable and useful promise e-Health has. Time will tell!

1 comment:

Bernard Robertson-Dunn said...

Sussan Ley needs to control her spin merchants and get her facts straight, especially after the census put a dent in the trust people have in their government.

She says:
My Health Record System is a secure, online summary of people’s health

No it isn’t.

It’s a document repository where proactive and engaged patients can put a summary of their health status. It doesn’t magically happen.

Health records, including those the Government created from the opt-out trials, will not contain a summary unless the patient has a myGov account, sees their GP, specifies a Nominated Representative, creates a summary and uploads it. Patients can also then set access controls and read the audit log.

They then need to maintain it.

If they don’t create a summary they won’t have one.

If they don’t maintain it, it could be dangerously wrong.

What we don't know yet is if Mr Kelsey will meekly follow the party line or if he sees through the spin and does something courageous. (And I have seen Yes Minister)