Recently we needed to move to a new family doctor, and called our GP to ask about transferring our health records, to enable continuity of care with our new provider.

If you've ever tried this, you will have also found out that the NHS considers your health information on their property. Now this seems to be an area of confusion, especially in the era of GDPR.

Doing some additional research on this topic, it seems that there is a distinction between ownership of the physical record, and ownership of the information on that record. This leads to a confusing situation where non-digital, older medical information written on paper cards, is inaccessible and archived somewhere in the north of England. Whereas electronic records seem to be a lot more easily accessible, albeit surrounded with some level of confusion about whether or not they can be shared with the patient.

The NHS website and privacy policy point out that you should be able to request copies of your information, however this process so far has led me to incomplete and incorrect information. I will continue this quest, and update this post should I find the way through this.

However, what is this got to do with interesting technology? I'm glad you asked.

Who's Customer?

Data ownership has many implications, from privacy and data protection, to customer ownership and revenues. In my career, I've seen a number of potentially game-changing innovations disintegrate because of a disagreement between the two parties as to whose data it was, in other words who owned the customer.

In the world of health and medical research, where data makes all the difference to research grants, outcomes, and future revenues the fight for data and customer ownership is tough. As an individual whose data is being fought over it's going to be even tougher to stamp your mark of ownership on that data.

Blockchain and Medical Data

Since poking its head above the metaphorical parapet, Blockchain has been the mythical answer to many of our societies big challenges. Some of these are with merit, some of them I think are slightly more fanciful. However the idea of using Blockchain to provide more transparency and control over patient medical health data is one that has gained momentum.

However, even in the Blockchain utopia of distributed, decentralised data where no one really owns the data, in the medical health sector blockchain will need to deal with multiple ownership of the same data sets.

The dream is to find a solution that allows individuals to both own and monetise their data, allow research to be done against this data in a consented way to allow Health organisations to optimise health provision and delivery, reinforce governance and much more. Currently as mentioned above and individuals health information is dispersed across many physical and digital locations, administered and owned by several organisations and institutions, and used in both societal and commercial purposes, mostly without the individuals specific knowledge and consent.