Privacy and healthcare data

There was  a very poor piece published in E health Insider recently, poorly researches and partial.  It is a news forum I respect and Jon Hokesma was clearly having an off day.   But it raised an interesting question, who do we want to hold our health related data.

I am really interested in the health information privacy debate. There is a tension in people’s views, I would call it a circle of confusion….

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The recent noise about Google and Healthvault (HV)  in the Times is a good case in point.  Some these these commercial providers replacing the national systems of NPfIT.  Clearly they can’t, the focus of the IT investment is the organisations its supports, the focus of Healthvault is the family and the individual.  The requirements for each are very different.  That is why the NHS has tried unsuccessfully to launch healthspace.   The real problem with healthspace is that it defines you as patient, that is fair enough for the NHS who see us all as patients, but many will prefer to see themselves a citizens first whom are interested in remaining well.

People input their health information into HV because health organisations are generally are not interested in storing it, Travel Vaccinations, Pet health (yup women are more interested in the health of the family pet than the health of their Spouse). They also use it to prep for meetings with GPs and Consultants, logging weight, symptoms and emotional states. None of this stuff is held in any of the episodic healthcare repositories (mainly paper) in the NHS.

So we have a long way to go before we have an effective answer to the citizen centric issues. I know one thing I would prefer to be in control of my data rather than the Government and or its proxies.