Data is the lifeblood of our digital society, but how our personal information is stored and shared is an understandably contentious issue. ‘Tools for Life: Data Sharing and Public Health’, a 20-month public engagement project which concluded in March 2021 and was headed by Information School Lecturer Dr Jonathan Foster, looked into the issues surrounding this idea in the context of patient data, with consideration of this issue being particularly important against the backdrop of the current NHS opt-out system for consent.
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| Dr Jonathan Foster |
Alongside Dr Foster, the project involved fellow Information School Lecturer and expert in Health Informatics Dr Laura Sbaffi, and Professor Suzanne Mason, a clinician academic and Professor of Emergency Medicine based at the University’s School of Health and Related Research (ScHARR). With Jonathan’s expertise being in Information Management, the project had a broad knowledge base from both the health and the data side of the equation. The project was funded by the Wellcome Trust, a charitable organisation focused on health research.
The project’s aim was to encourage a dialogue about the benefits and risks of the public sharing their patient data for purposes beyond their own individual care (i.e. beyond the obvious need for your own doctor to keep information about you in order to give you the medical assistance you need). Through patient interviews and a follow-up survey, the team wanted to understand some of the factors and conditions that influence people to decide whether or not they consent to this kind of information sharing.
“We felt like we were acting as a kind of middleman between the National Health Service on the one hand and the public on the other”
“There’s a great interest in leveraging the power of data in society generally - in this case patient data specifically”, says Dr Foster. But what would this data, if shared with consent, be used for? There are several answers. Anonymised, de-identified patient data is valuable for analysis for the advancement of science, improved administration and commissioning within the NHS, and hopefully improved treatments and public health more generally. The first step to any of these outcomes, though, is a commitment on the part of patients saying they are happy for the NHS to use their data for purposes beyond that which it was originally intended. “We felt like we were acting as a kind of middleman between the National Health Service on the one hand and the public on the other”, says Dr Foster.
Unsurprisingly for such a sensitive and important topic, ‘Tools for Life’ isn’t the first project to look into this area. The NHS ‘Care.data’ was an integration project that began in 2013, with the aim of taking primary care data from GP surgeries, tertiary specialists and other care providers and consolidating it all into the Health and Social Care Information Centre, a database where hospital stats are stored. With all the data in one place, researchers, scientists, clinicians and some commercial organisations would then be able to access it (with the necessary safeguards in place).
“There are two regimes around consent”, says Dr Foster. “At the time of the ‘Care.data’ project it was an ‘opt-in’ system. This meant that the NHS had to go out to the public to inform them about some of the purposes of the project, as well as about the data chain; how their data would be captured, stored, used and shared, and with whom.” Under this system, a patient could then go to their GP and sign a form saying they were happy to share their data, specifying whether they want it to stay within the NHS or if they were happy for it to go out to universities and other organisations. However, the project was brought to a close in 2016 amid public outcry, leading to a parliamentary committee hearing. It was generally felt that the engagement with the public (mainly in the form of a leaflet sent in the post) was insufficient, with many members of the public left totally unaware of the project or the surrounding issues. Dr Foster feels that the project may have been too large scale, based on an underestimation of the public’s interest in the ethics and security of their data. After a review of the project, the system for data sharing was changed to ‘opt-out’.
“Since this year there’s been an expectation that all GP surgeries would upload their data to the Health and Social Care Information Centre”, says Dr Foster “and if a member of the public wants to cry foul, they can go to the NHS website and opt-out.” This is similar to changes to the process around organ donation; you used to have to specifically say you wanted to donate your organs and carry a donor card, but now, it’s assumed that you will unless you opt-out. At the time ‘Tools for Life’ was starting, the decision to move to ‘opt-out’ was on the cards, so there was an interest in looking at the framing of this.
“I teach information governance and ethics”, says Dr Foster on his own motivations to work in this area.
“I was using the Care.data case as an example of an information resource to look at the issues around the relationship between institutions and the public.”
As well as finding out the public’s opinions on these issues, another objective of the ‘Tools for Life’ project was to develop a pair of videos to explain the benefits and risks of the sharing of patient data and what happens to your data if you do share it, in a simple and publicly accessible format.
“Another definite motivation was my interest in deliberative democracy and a democratic approach to education”, says Dr Foster of the third objective of the project, which was to evaluate and test the effectiveness of these new videos as information tools at ‘Deliberation Day’ events.
Deliberative democracy involves having public discussion and deliberation before casting a vote on something.
“Rather than it just being a cognitive exercise where you think about ideas in your head and then go and vote”, explains Dr Foster, “you go down the pub and discuss it with others or - even better - you go to a more public forum, like Question Time, for a broad discussion and exchange of views before you vote. Through that exchange you’ll be able to better understand your own assumptions.”
Dr Foster has run so-called ‘Deliberation Day’ events with students at the Information School before, with participants asked to vote on an issue multiple times after receiving different kinds of input about it. For the ‘Tools for Life’ project, deliberation about the benefits and risks of data sharing was spread into two days in the same week. Participants came to the first session with varying degrees of knowledge (or ignorance) about the topic and were asked to vote on whether they would consent to the sharing of their patient data after a brief introduction to the concept. Then, they were shown the information videos, which presented a balanced view. Next, they were asked to discuss the issues with each other, before finally being provided with an in-depth infographic about how attitudes to data sharing change across the life cycle of data. They were then asked to vote again, so that the research team could see if any minds had been changed.
“I’m a great believer in the idea that if you can articulate your assumptions and declare your prejudices, that in itself is a useful educational exercise”, says Dr Foster of the benefit of deliberative events. “In the process, you’re also more open to changing your view in relation to someone else’s.”
The minds of some of the people who came to the events undecided on issues around data governance were changed by the information presented.
“As with many things, this issue is quite polarised”, explains Dr Foster. “The people in the middle, who were undecided - or generally indecisive - were the ones most likely to be persuaded, and most ended up in favour of consenting to the sharing of their data.”
“An interesting thing that came up during the project was me having to try and make a decision about whose side I was on”, Dr Foster says of being put in difficult positions at the deliberation events. “I never entirely resolved that issue!” He speaks of struggles engaging with people on the anti-data-sharing side as someone who was being funded to enable the discussion with the hope that people will ultimately come around to the pro-sharing view.
“One of the learning outcomes I got from this project was that you’re going to encounter incompatible views and it’s quite difficult to navigate”, he says. Whilst trying to enable the public to understand these issues more and take back some agency, the team were also aware that not all the necessary governance systems are nailed down on the institution, leaving them with a foot in each camp, trying desperately to promote interaction between the two.
“If you don’t tell people what you’re doing with their data, it turns into a power relationship”
Another dimension to the project was to do with the relationship between institutions and civil society more generally, in a world where data is being shared more and more. Dr Foster doesn’t believe that complete transparency in every sphere is either desirable or possible, but he does feel that if an ‘opt-out’ system is to work then there needs to be a functional dialogue to ensure that everyone stays informed.
“If you don’t tell people what you’re doing with their data, it turns into a power relationship”, he says. The sale of data by large corporations like Amazon does sometimes make it to the news headlines, but this isn’t a proper feedback loop of information.
“If data is something the public cares about - and there are probably things they care more about on a daily basis - then I think there’s an obligation for institutions to be more voracious about making it clear what they’re doing”, Dr Foster says.
In general, the project found that the public are willing to share their data for the benefit of science and public health, but Dr Foster argues that this comes at the price of a reduction in autonomy. More than half of those surveyed were unaware of the ‘opt-out’ system.
“You’re not taking a completely informed decision about how to act with your data if you’re not aware of your options or what’s happening”, says Dr Foster, who says that autonomy, veracity and transparency are the three major ethical issues raised by the results of the project.
There was also some concern amongst participants about the fairness of the distribution of the benefits when data is shared; do commercial companies benefit more than science, public health or society in general? In this vein, sharing with commercial companies or even local governments was more of a concern than sharing within the NHS or sharing with universities and other researchers.
Analysis of the survey responses also revealed that peoples’ views on data governance and ethics vary depending on their age group. Very broadly speaking, younger people were less concerned about data sharing, feeling confident that it’s being governed correctly by those who control it. They care strongly about issues of fairness, but less about the other ethical issues. In contrast, older people are much more concerned about data sharing, with a lot of skepticism about the governance of their information. Dr Foster posits that, aside from feeding back their findings to the Wellcome Trust, this suggests that another useful outcome from this study could be a push to raise awareness of data ethics issues with young people, as well as demonstrations to older people of how governance issues can be and are being effectively handled. Bringing both groups to a more balanced understanding and agreement should help people to stay engaged and correctly informed.
The commercially-produced information videos and infographic are available in the Wellcome Trust library, as well as on YouTube and in a recording of a research seminar that Jonathan gave about the project. The team hopes that the videos will be picked up and shared more widely. Dr Foster also has a separate EPSRC SPRITE project on accountability and ethics in digital business ecosystems currently 75% complete, with some issues common between both projects.
“Lots of the public have general ideas about these kinds of issues relating to accountability, governance and ethics but they don’t necessarily use those terms for them”, says Dr Foster, who finds the gap between the academic and the everyday - and the related issues of translation - interesting. When looking at issues as important as those surrounding personal data and public health, it’s clear just how important bridging that gap can be.
- Richard Spencer
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