The security of this data is of the utmost importance, there is a reason why the medical community takes data security extremely seriously, is because even though health insurance companies have a HUGE financial incentive to get a hold of this data by any means necessary, it undermines how the health insurance system works. It’s like letting them count cards in Blackjack, the data could let them pick their own odds in a game where life & death is at stake.
While the privacy concerns are real, we must also be realistic that this idea will keep coming up because of the potential health benefits of a centralised health record. For example, access to health history in an emergency, faster care with less redundancy, and complex conditions requiring the work of multiple specialists.
There are two ways that this could go- fight this all the way on the argument that the lives lost and human suffering if this data got out would be much greater than a marginal amount of health benefits that doctors can already cope without anyway. The way this is going, I don’t like our chances though.
Or do we work on the change from the inside to push that if it is to happen, it must be on our terms, without compromise.
Is it even technically possible to secure such a large honeypot of valuable data when the stakes are so high?
If such a thing was to go ahead, we should set forward some technical requirements, none of which can be ignored. Perhaps there is a pathway to eHealth records, by first having a technical feasibility study on how the data can even be kept secure with the stakes so high which adequately addresses all the issues.
This needs to cover not only the security of the database itself, by also how secondary users can get access for a seemingly unrelated reason, in a world comparable to how the the US, a “Social Security Number” has become the de-facto standard of identity, but sharing this code with anyone even for a secondary use also grants access to the person’s entire identity without limitation
My vision for a workable eHealth record system would be one where it is in a standard format rather centrally managed by one party. The government can not be trusted to manage sensitive data, with rogue staff within Medicare proving this. The only person who you can trust is yourself.
For example, a standard data format of health record which you can either host yourself or trust another party to host for you (under strict regulations and auditing of security best practice, and absolutely no connection to health insurers. Your data file is transferable to another party. Perhaps an appropriate data holder for anyone who can’t be fussed with self-hosting would be your primary care GP or the practice which they belong to, who have a vested interest in keeping health insurance affordable. There are opportunities for commercial vendors to assist GPs/Medical Practices with hosting of this software, and this would be under strict controls also.
Within this data format, the application needs the ability to grant different permissions to different users and limited to only the parts in the file which the user allows.