I have just been listening to a group of senior NHS and Social Care staff lamenting the lack of interoperability of their IT systems.
So lets just get this one in - what about the interoperability of your systems with me - the patient/user?
Lets be clear - your data is not about me. Its about the things you do to parts of me. It is the stuff that matters to you because it is your everyday business - I give you that, but it is not about the real me. It might be a ‘patient record’ but it sure as hell is not a ‘me’ record.
Allowing me a view into the data you hold on me is all very kind and no doubt allows the government to tick a policy box somewhere but it is usually incomprehensible in the context of the real me.
So let’s be crystal clear - what I want is for your systems to be interoperable with me.
Think about it for a moment - it might make life a whole lot easier for you than it is now. If you need to make all your systems interoperable with each other think of the number of different connections you have to make and the different standards that have to be navigated. And I bet it will make it even more complicated for patients/users.
So I want a 'Me Record'. You are holding bits of the jigsaw of data about me and I require you to make it available to my ‘Me Record’. I can add whatever else I think is important whenever I want - my Fitbit data, telecare data, my shopping habits, my Living Will, my ambitions for a life well lived.
I will decide who I make it available to - I am best placed to make the risk/benefit decision about sharing (perhaps with some good advice), not some risk-averse NHS or Social Care organisation being anally retentive about security and confidentiality to the detriment of my care. I might want to make it available for research, or have it send alerts to my family or GP. I might even want to sell my data - why not?
And just to anticipate your comments about inequality of access to the internet etc - well by the time you get your combined acts together there will be a whole generation of Baby Boomers who have grown up with using the internet for everything from shopping to banking to booking holidays. There will be more than enough of them to act as early adopters, pathfinders exploring the route for those that follow. Enough to make a difference to the way you design and deliver services, enough to make integrated service delivery a lot easier - provided of course that is what you really want for me.
So - make your systems interoperable with me please. It might make everybody’s life a lot easier.