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Who owns health data and how can it best be put to use?

Too much of the conversation about data use in the NHS revolves around misuse and downside rather than benefits and upside.

By Jon Bernstein  

From left to right: Bernstein, Kinnear and Tennison ©Carrera Commercial Photography

Read a companion piece, “Building a new social norm for health data,” here

When Prospect convened a panel discussion to discuss the role of data in healthcare, we hoped to draw on examples of the application of data, tease out ownership and privacy issues, and discuss regulatory need as well as policy response. With a panel of healthcare professionals, politicians and data experts, we got this and more. Here are six of the key takeaways from the “Who owns health data and how can it best be put to use?” debate:

  1. Three reasons why the NHS is not getting the most out of its data

“The big question for me is why aren’t we exploiting the value data has got to better serve the public?” asked Andy Kinnear, director of digital transformation at NHS South, Central and West CSU, as well as chair of the health and care executive of BCS. Kinnear then set about answering his own question, citing three primary reasons:

  • The storage and collection of data still needs improving. Too much of it, meanwhile, is paper-based.
  • Organisational structures. “Despite how it might appear on the outside, the NHS is a myriad of organisations,” explained Kinnear. “What that often means for the public who are traversing those many different organisations and services, is that data is not always constructed in the best way.
  • Ownership. “Until we get to a place where the public owns that data,” said Kinnear, “then we won’t see the NHS truly realise the power of that data.”
From left to right: Taylor, Churchill and Bernstein © Carrera Commercial Photography

From left to right: Taylor, Churchill and Bernstein ©Carrera Commercial Photography

  1. How a “grumpy patient” became a data advocate

“I came into Parliament because I was a grumpy patient,” explained Jo Churchill, MP for Bury St Edmonds and chair of the All Party Parliamentary Group on personalised medicine. “I got cancer for the first time when I was only 31 and I thought that was my brush with it and then I had another couple of goes… I have a long term interest about how we look at data and how we use data to benefit people.” Churchill describes herself as “Mrs Data. I don’t let anyone go until I’ve told them how important it is.”

Panel: who owns health data and how can it best be put to use? ©Carrera Commercial Photography

Panel: who owns health data and how can it best be put to use? ©Carrera Commercial Photography

  1. Data ownership is more complicated than you might think

“It’s my health, it’s my data. But it’s our NHS, it’s our data.” So said Jeremy Taylor, chief executive of National Voices, an umbrella group of health and care charities, by way of explaining the complexities of sharing data. And it gets more complicated, as Jeni Tennison, chief executive of the Open Data Institute, explained. “Data is not a physical thing that only one person can own,” she said. “Data can be about multiple people. My health data, if I’ve gone through IVF, also reveals something about my children and my partner. Genetic information also reveals something about my parents and my relations.”

From left to right: Bernstein, Kinnear and Tennison ©Carrera Commercial Photography

From left to right: Bernstein, Kinnear and Tennison ©Carrera Commercial Photography

  1. Terminology matters

That’s the view of Tennison, who said it’s important in debates about the use of data that people fully understand the distinction between:

  • Closed data, that only an individual has access to and only he or she can choose whether—and with whom—to share it.
  • Shared data where consent has been granted to aid researchers or in the creation of public health statistics.
  • Open data, that anyone can access, use and share. “In the health domain,” explained Tennison, “these might be lists of diseases or lists of interventions, drugs and their side effects, or aggregated health data.”
    Al-Ubaydli and Taylor ©Carrera Commercial Photography

    Al-Ubaydli and Taylor ©Carrera Commercial Photography

  1. Should care be conditional on a patient’s willingness to share data?

It was a question posed by an audience member—and it was a question rejected by all five panelists, to a greater or lesser degree. Mohammad Al-Ubaydli, founder and CEO of Patients Know Best, said: “I’m very happy about sharing my data and believe most people would do the same but I have a reaction against the state mandating access.” Taylor of National Voices said the notion left him “slightly uneasy” in part because it tramples on the altruistic notion of reciprocity, what he called “the gift relationship.” Instead, Taylor suggested a “slightly less hard-edged” version of the contract —”We’ve got a free at the point of use, comprehensive NHS which is bloody expensive, so the least you can do is help by giving us your data.” “I prefer that version,” Taylor said.

Churchill ©Carrera Commercial Photography

Churchill ©Carrera Commercial Photography

  1. The data narrative must change

Too much of the conversation about data use in the NHS revolves around misuse and downside rather than benefits and upside. It’s time, said Churchill, for a grown up discussion that avoids “very old information and apocryphal stories.” “The change will start to happen when media reporting starts talking about people who came to harm because their data wasn’t shared,” said Kinnear. Taylor added: “We need to be saying, ‘We did this because of data.’” So who’s job is it to change the story? “It’s all our jobs,” said Churchill.

©Panel: who owns health data and how can it best be put to use? ©Carrera Commercial Photography

Panel: who owns health data and how can it best be put to use? ©Carrera Commercial Photography

 

With the support of BCS, The Chartered Institute for IT, Prospect hosted a series of panel discussion at the 2016 Party Conference on health data. These discussions were chaired by Jon Bernstein, Associate Editor for Prospect. Speakers included: Chi Onwurah MP, Shadow Minister for Business, Energy and Industrial Strategy; Diane Abbott MP, Shadow Secretary of State for Health; Jo Churchill MP, Chair of the APPG on Personalised Medicine; Andy Kinnear, Chair of BCS Health; Dr Jeni Tennison, CEO, Open Data Institute (ODI); and Dr Mohammad Al-Ubaydli, Founder & CEO, Patients Know Best.

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