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Whose rules for accessing personal health data?

Last week a couple of us attended a workshop in Dunedin put on by the National Health IT Board (New Zealand).

Graeme Osborne, who led the workshop as the Board Representative, correctly observed that “Health IT is hard because it is a reflection of a culture and its beliefs.” Correct, and in a multi-cultural society, you have multiple sets of social norms and individual expectations.

Everyone wants a break-glass policy whereby all their personal data can be accessed in an emergency situation, but no-one wants any random  clinician or health worker to be able to see certain things about their health (mainly related to mental, sexual and genetic health details). This makes it really difficult to create national standards with a single privacy/access rule. Different people and different cultures hold different viewpoints as to what should be easily accessible.

New Zealand national health IT policy has 3 objectives, but like most of the rest of the world only 2 of these objectives are really being concentrated on at a national level. They are both to do with linking Primary, Secondary and Tertiary care by data standards.
1) That every health organisation collects patient healthcare information.

2) That health results are made available to clinicians.

3) A personal health record for all New Zealanders by 2014.

The third point seems to be so contentious that it is essentially being left to marketplace innovation to see if anything practical may result.

While there may be some default settings in terms of clinical data made available to other clinicians involved, I believe that transferrable and accessible health data can only work if individuals are empowered to control their settings. But there is a lot of patient education that has to happen before most people in society are even aware of all the pertinent issues so they are able to make the right choices.

Which is why at Lifetime Health Diary™ we are working with communities. Not only does this allow people to discuss with peers and people they respect to guide them through the minefield of information rights inherent within Health IT, but as the CIO of a large hospital here in New Zealand recently told me “No matter how good the data within my hospital is, 90% of healthcare takes place out in the community, and I see 0% of that”. Well said. National data standards cannot collect data that is not part of the system to begin with!

So whose rules for accessing health data? The individual, informed by communication with their community, which in turn need representatives who understand the issues and communicate with the national health bodies responsible for data standards. A little bit of effort expended in this area may return a lot more back to the health system in term of engagement from people than yet another clinical data sharing standards project.

Yours in health,

Hamish

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