30/08/2016
The HSE has launched a new document- their Open Health Data Governance Strategy.
Which is to say, it is the blueprint which should explain what medical records and data they plan to release to researchers (including commercially backed drug company researchers) from our medical files.
This is a very live issue internationally- with the UK having only recently scrapped their plans to create a single digital medical record for patients, and then share that data to 3rd parties.
We have already written on our website about some of our concerns with the HSE's Individual Health Identifier plan.
( see: http://www.mcgarrsolicitors.ie/2015/10/28/whats-the-prognosis-for-health-identifiers-after-bara/ )
However, if patients (which in the end means all of us) are to be moved to a single, digitally accessible eHealth record, we're going to need to see what- exactly- the HSE means when it says it will only share that data after being 'de-identified'.
After the Governor of Massachusetts collapsed on stage in 1996, his de-identified health records, which had been released as part of a dataset, were successfully re-identified by an MIT student using only public data to match his details. This eventually led to a law restricting release of medical data in the US.
It would be better for everyone if we knew what the HSE currently considers to be 'de-identifying'.