Consent- with feeling- Facebook style

Just so you know. If you are one of my patients I can look at your data in the clinical system, but I can't see your hospital record. 

It's ironic because the etymology of consent is from the Latin words for "with feeling" in other words consent means our emotions and motions are aligned. All too often we take consent as meaning "with knowledge"   so accessing a patients record without their knowledge is a bad thing, but what if it's something that you are doing to help them and improve their care?

I know if you work in healthcare these Information Governance silos are commonplace. I also know that there are good reasons why I can't just go browsing the hospital records of patients for whom I don't have a legitimate relationship. 

However, I'm suspicious that in a lot of circumstances the barriers we use to protect data are in fact just protecting the interests of the organisation that supplies the care or the provider that supplies the system. 

Here's an example- If i send a patient to hospital the letter I send is created by me with the amount of data I considered necessary. If the specialist wants more info they can not get it without writing to me and I write back. It's antediluvian.  

It would be much better if the speialist could just dip into the patients record, read the stuff they needed and bingo! Problem sorted. 

We don't do that, we have an industry of governance, a consentual nightmare.  

If I may can i suggest we move to the way our world works in other spheres.  

Right now there's a lot of people on Facebook. They have been trained, prompted and schooled in the art of information sharing.  

"Who do you want to see your posts?" And "Share with friends (except acquaintances)" is not rocket science, but if the NHS were more like Facebook in its consent life would be a whole lot easier.  

Imagine seeing your GP, afterwards you open the app, view the notes of a consultation describing your bad chest and need for time off, then you choose to make it available. Your default is GP and primary care team, but you can choose share with family (careers),  secondary care (named specialists), research (non identifiable), and even your employer! Of course your attendance at the special clinic has a default so not even your GP can see it. 

To establish the choices each of those specialists and wider care team would need to send a "friend request" ad you the human would need to decide or refuse. Simple. 

Just like Facebook.  

Now you'll tell me, just like Donald Trump that Healthcare is complicated, that access to information on which decisions are made is critical, that data is valuable, that breaches are costly, that I clearly fail to grasp the complexity of the situation. 

My response?  

Unless we decide to put the person who we are caring for at the centre of a joined up network of consent to share the NHS will fail. The move to accountable care organisations will require such a model, HIPAA-esque portability of records. We either do this or our cousins from across the water will show us how its done. 

Just like Facebook.