Professor Joe McDonald pens an open letter to Facebook’s founder and chief information officer on what the Great North Care Record is learning on consent. In the current climate, he suspects Mr Zuckerberg just may find it helpful.
Dear Mr Zuckerberg,
Let me first apologise for my impertinence in writing to you. You are clearly a very bright young man, you have made something wonderful in Facebook, and I’m sure you have no shortage of advisors. I am a massive fan of your product and – despite the recent revelations about Cambridge Analytica and the unfortunate revelations about data sharing between your company and theirs – I will not be deleting my account just yet. Despite all the possible misuses I believe Facebook is, on balance, a force for good, although I do believe it could be an even bigger force for good if you put your mind to it.
Who the heck am I to be offering advice to you? Well, my name is Joe McDonald and I have been a psychiatrist working for the English National Health Service for the last 34 years. So I have spent a long time talking to citizens about confidentiality, its limitations and the need to share information with others for care or research.
NPfIT: we learnt a lot…
A decade back, I worked on England’s National Programme for IT in the NHS as national clinical lead for IT in mental health, with exposure to the intricacies of sharing extremely sensitive data. That programme was generally, perhaps unfairly, considered to have failed – despite having spent nearly £13 billion. But we did learn quite a lot about information sharing and confidentiality… well, some of us did. At the time I remember explaining to my young daughter our attempt to give every citizen an electronic patient record, to which she replied: “Why bother, Dad? Just give them an extra Facebook account each and they only friend their doctors and nurses. That would be free.”
More recently I have become a professor of health informatics practice at Newcastle University in the North East of England, where, I’m sure you will know, we invented electricity, trains, computer programming, the light bulb and of course, Newcastle Brown Ale.
Let me tell you about the Great North Care Record
My final credential is that I am director of a project called the Great North Care Record. That sounds a rather grandiose name given we only serve 3.6 million citizens compared with the two billion citizens you serve on Facebook, but sometimes it’s easier to understand problems if you delve into the detail with smaller numbers.
The Great North Care Record has three aims:
1) To make our region the best place in the world to get care
2) To provide information to the NHS to enable our taxpayers to get best value from the NHS
3) To provide the best health and care research environment in the world
It is in number three that our interests come together and where we might usefully help each other I think, Mr Zuckerberg.
In building the Great North Care Record we want to be able to share citizen’s identifiable health data to do research which will, say, identify the best treatment for a person with schizophrenia and certain features on their genome.
It’s all about informed consent, Mr Zuckerberg
The NHS has been extremely successful at introducing electronic patient records but very poor at getting any meaningful information out of them. 25 years of data on 50 million people. Just sitting there. Doing nothing. The reason? Well as you know very well now, you need informed consent to share that information for research and in the past it was considered too difficult to collect all that informed consent.
So, going back to basics and in an attempt to come up with a model for informed consent we ran 20 workshops across our region attended by citizens. We asked them to help us design a consent model to unleash the power of their data for genomic and precision medicine. We discussed the concept of “the creepy line” – the point at which information sharing gives the citizen a creepy feeling which causes them to withdraw.
The creepy line
Facebook went over my creepy line when you shared my friend’s telephone number from my data without my friend’s permission. What we found in our 20 workshops, not surprisingly, is that everyone is different in terms of their creepy line – some very relaxed about sharing and some really passionate about privacy. Some people are happy to share their data for their own healthcare but not for research by big pharma.
Previously, to get around this problem our government came up with a concept called “implied consent” which was rather colourfully described by a former shipyard worker in one of our workshops as: “Clearly some London-based bollocks. Nobody implies my consent.” I fear in your recent troubles, you have knowingly or not been operating on implied rather than informed consent, and it has bitten a chunk out of your share price. That doesn’t matter. Share prices recover. What matters is trust.
Trust is learned at your mother’s breast; it is the foundation of successful personality development and underpins all successful enterprises including Facebook and The Great North Care Record. You, we, can’t afford to lose trust. We will shortly be publishing a report from our consent model workshops which may be of use to you. But ahead of that I can share two principles: firstly, citizens want control and secondly, transparency.
An offer you can’t refuse
So within the Great North Care Record we have worked with our citizens and our government agencies (NHS Digital and NHS England) to come up with a model which gives the citizens control and transparency with regard to their data. It allows them to manage their own creepy line and therefore allows them to feel happier about being a data donor. This I hope will mean privacy lobbyists in the UK who recently criticised the government for “always doing the right thing – but only after they’ve tried everything else” will be able to support it. I learned recently that this quote was originally from Winston Churchill. “You can always count on the Americans to do the right thing – after they’ve tried everything else.” How rude. I’m confident that’s not true of you, Mr Zuckerberg.
Anyway, I am going to be a bit busy the next few weeks bidding for some government funding (£7.5 million) to develop the next phase of the Great North Care Record under what we call the Local Health and Care Record Exemplar (LICRE) programme. If we aren’t successful in that process I was wondering if we might help you by sharing our consent model work so that you can do the right thing with your members’ creepy lines in return for, say, £7.5 million? Let’s face it: you could do with a good news story and I may need some cash. I will be in the US in May if you would like to meet and discuss.
Professor Joe McDonald