The bureaucrat overseeing My Health Record presided over a disaster-plagued national health record system in the UK, and has written passionately about his belief that people have no right to opt out of health records, or to stay anonymous.
Tim Kelsey is a former British journalist who moved into the electronic health record business in the 2000s. In 2012, he was appointed to run the UK government’s national health record system, Care.data, which was brought to a shuddering halt in 2014 after widespread criticism over the sale of patients’ private data to drug and insurance companies, then scrapped altogether in 2016. By that stage, Kelsey had moved to Telstra in Australia, before later taking a government role. There was considerable criticism about the lack of information around Care.data, and over 700,000 UK people opted out of the system.
Kelsey has in the past vehemently opposed allowing people to opt out — the exact model he is presiding over in Australia. In a 2009 article, “Long Live The Database State”, for Prospect, Kelsey wrote:
People should be allowed to share their personal data with whom they wish, be it a small charity or a giant like Google. But no one who uses a public service should be allowed to opt out of sharing their records.
For Kelsey, this was necessary for effective health services.
If we want to have good public services, we are going to have to trust them with our data.
Kelsey also expressed his opposition to the anonymisation of data, even of the most personal kind.
Nor can people rely on their record being anonymised — at the moment sexual health services can be anonymous, and as a result there are almost no measures of performance in that sector.
Kelsey’s vision was of a vast state apparatus collecting, consolidating and distributing private information to enable an interventionist state.
Data sharing must be made easier, first by removing the legislative obstacles to sharing government databases… Public services should be able to predict who is most likely to want to give up smoking, be at risk of diabetes or play truant from school. Armed with such data the public sector could intervene earlier, prevent problems and ultimately save money.
Moreover, he stated others should have access to data.
More should be done to encourage businesses and charities to turn this data into things that people can use — from websites rating GPs to maps of local crime.
For Kelsey, concerns about civil liberties were overblown.
The small risks of a government holding data on citizens are greatly outweighed by the potential benefits.
At ADHA, Kelsey is doing little to fix his reputation for controversy. On Saturday, ADHA released an extraordinary 1000-word attack on News Corp health journalist Sue Dunlevy who correctly pointed out the strong risk to privacy in the My Health Record system. The statement repeatedly criticised Dunlevy, accusing her of “dangerous fearmongering” and being “misleading and ignorant”.
Dunlevy had rightly noted the lack of any effective information campaign about My Health record (exactly the criticism made of Care.data), prompting ADHA to boast of its $114 million campaign at Australia Post shops, Department of Human Services “access points” and letters to health practitioners. It makes you wonder why even News Corp’s Janet Albrechtsen said she’d never heard of My Health Record until last week.
Strange that Kelsey, a Murdoch journalist in his past life, would think it’s an effective communication strategy for a government agency to launch a 1000-word spray at one of News Corp’s best journalists.