Data and permissions

I think many of us in the industry are still wondering about access to data and who should have it.  NHS Digital do a great job of protecting access to health records and as one of the companies that has earned the rigth to access the national records, I can say it is a very rigorous process to maintain that privilege.

More broadly we are seeing companies get in trouble for using data in the wrong way from individual hospitals, non-anonymised records being shipped (by mistake) to a company and other things that citizens in some countries (I'm looking at friends in Sweden) would find unacceptable.

So who owns your data?  Are you happy for it to be sold or just passed on to companies, or do you want the opposite end of the spectrum where you have control over it and sharing beyond your direct health providers requires your consent (and maybe.. whisper it quietly.. payment).

There is no one right answer but I'm fascinated by how we deal with data and a swing the door open policy and let favoured companies get access to it willy nilly doesn't seem like the smartest idea.  But maybe I'm wrong...

I have always believed that as a patient, I should own my data and that healthcare professionals are merely 'stewards' of it. I believe that legally it is owned by the Secretary of State (or at least it used to be).

If I want to sell my information, I should be able to, with a highly transparent way of tracking who uses it (Blockchain or Holochain anyone?)

There is an interesting company in the USA called Healix (or similar) that takes your genomic data and manages it on your behalf, only allowing other companies access to it on your behalf when you give permission, and you can revoke access at any time. A good model that could be applied more widely .....

There are some companies working on the control of longitudinal patient records using blockchain.  Can't believe I didn't drop that word in previously.

Thanks for the thoughts.  I'm generally aligned with your thoughts on use of my data.