Joe’s View: Consent is dead; long live citizen data sharing preferences

Joe McDonald wasn’t a hobbit in Lord of the Rings, he wasn’t at Wembley to see Geoff Hurst’s winner, but he did see Otis bowl a historic tenfer and he’s now heard Jeremy Hunt promise to put patients in control of data sharing.

My youngest son, Jake, recently went to New Zealand to train as a ski instructor during his long summer holiday from Bristol Medical School. On his return – fully qualified and now available for private tuition in the Bristol area – he joked that everyone in New Zealand had apparently been an extra in the filming of Peter Jackson’s The Hobbit.

In a similar phenomenon, nearly every member of my generation claims to have seen the Sex Pistols at the 100 Club, though clearly the size of the venue and the brevity of the Pistols’ career would render this impossible.

Were you there for Geoff Hurst?

Likewise, only 93,000 people were at Wembley for the 1966 World Cup Final, so how come there is a lucky ticket holder propping up one end of every bar in England, even though the game was 51 years ago? Surely a few must have succumbed to the booze and fags by now.

Anyway, this I-was-there phenomenon is occasionally true. For my boy’s 21st birthday, my family had the pleasure of being guests in an executive box at Durham County Cricket Ground for an England v The West Indies T20 competition. As we settled down at our table, I told the younger members of the party of the I-was-there story that Jake and I shared. Ten years earlier we had been privileged to be at the extremely rare occurrence of a bowler taking all 10 wickets in an innings.

Were you there for Otis?

On Sunday 22 July 2007, we watched in awe as Durham’s West Indian import, Otis Delroy Gibson, thundered in again and again, the small crowd roaring him on. Soon he had five wickets down. Then six, then seven. He couldn’t, could he? The ground started to fill as word spread. Eight and nine fell too. We were all bellowing as he ran in now…

As I was getting to the climax of our I-was-there-when-Otis-got-all-10 story, I lost my audience’s attention as the door of the executive box opened behind me. I turned to see who had so rudely interrupted my dramatic retelling of Otis’s finest moment at Durham. It was Otis. Standing smiling, massive in the doorway. You know when people say: “I was so surprised I nearly fell off my chair”? I nearly fell off my chair.

Otis stayed and chatted for a while and he disputed that his tenfer was his finest hour – he preferred his man-of-the-match-winning performance in the Friends Provident Trophy final a few weeks later. I wasn’t going to argue.

Day two event fatigue

Now those of us who have occasionally run or chaired a conference know there can be a tendency, at the end of day two, for conference fatigue to set in. Delegates often take the opportunity after day one to catch up with friends for a few beers which turns into a late night and by the second afternoon the call of the early train can be irresistible.

To counter this, the organisers of last week’s Health and Care Innovation Expo arranged for Jeremy Hunt to close. The lure of millions in funding to be announced would surely keep everyone in the room. It might have, had the content of his speech not been so widely leaked over the previous few days. Because of that, I would say a good 50% of delegates had taken the early train option. Nonetheless, I was there.

We knew he would name the acute fast followers, and say they would be getting £5 million each. We knew he would announce that there would be mental health fast followers at £3 million each (insert your preferred parity of esteem rant here).

Decade of patient power, promises

What we didn’t know was his change of heart on consent. Now I was there and I saw it. If you weren’t you need to see this for yourselves because I have already had conversations with people who weren’t there making the argument that nothing has really changed. It has. I was there. I saw it.

Hunt outlined eight initiatives to deliver ‘a decade of patient power’:

1. The marriage of 111 services with the GP record (we have done this in the North East).
2. People to be able to access their full record online (this is already in GP record functionality)
3. More online appointment booking (more of something that’s already there)
4. More repeat prescriptions online (more of something that’s already there)
5. “Transform” the opt in, opt out debate by allowing you to set data sharing preferences through an app. This is new thinking. Where did it come from?
6. Citizen to be able to record organ donation preferences through an app. New thinking.
7. Give the citizen to be ability to record end of life preferences. New thinking, but already done in some places.
8. Apps available via the NHS Apps Library to work more seamlessly with patients’ medical records. For instance, your Fitbit being able to ‘talk’ to your medical record. New thinking.

Changing sharing preferences at the touch of an app

Referring to point five, Hunt elaborated: “Whatever your preferences are, you will be able go online anytime and through an app change those preferences. We will be the only country in the world who does this.”

Is this the end to implied consent?

I wept tears of joy. Finally, an end to the oxymoronic nonsense of “implied consent” so beloved of the IG computer-says-no crowd. The secret of consent? Get consent. Better still, let us abandon the word consent and have an honest conversation with the citizen about the value of data donation and preference setting.

The nation has been ill-advised on information governance. Hopefully the new broom of Sarah Wilkinson, incumbent CEO at NHS Digital, can make a clean sweep of the muddled-headed thinking and spineless attitude to assaults on privacy that have previously typified the national approach.

I was there for the new vision on consent

I am happy to report that in the North East and North Cumbria we have long believed we should be empowering the citizen to control their data. We have been working with NHS Digital and NHS England on just such a solution for use in The Great North Care Record. That means we won’t have to deliver on the minister’s new vision from a standing start. But be assured it is a new vision. I was there. I saw it.