NHS App could be used by citizens to control how their health data is shared
NHS England is considering how the NHS App could one day be used by citizens to control who has access to their healthcare data - with opt-out mechanisms.
Dr Tim Ferris, Director of Transformation at NHS England, has told MPs on the Science and Technology Committee that the NHS App could one day be used by citizens to allow them to have insight into how their health data is being shared and used, whilst providing opt-out tools to give patients control over their data.
The aspiration comes after a number of NHS data projects - including care.data and the GP data scrape - saw strong backlash from privacy campaigners and patients. The general view has been that the NHS has not carried out enough engagement with the public around its data plans, nor does it give patients enough control or insight over who their data is shared with.
However, opt-out strategies are complicated and there are concerns that communities that are already underserved by government and health institutions may be more likely to ask for their data to be removed from research activities. It is hoped that by better engagement, improved transparency and giving more control to the public will result in fewer people asking to be removed from data schemes.
Whilst the NHS’s attempts to use data more effectively in recent years have fallen flat, Dr Ferris told MPs on the Committee that it’s vital that the health organization makes strides in this area. He said:
The importance of the use of health data, in making both small innovations and large scale transformations, cannot be underestimated. That data is the core asset that enables transformation.
And I don't think it's an exaggeration to say that addressing the NHS’s current capacity problems will require an extraordinary increase in the use of data to inform the delivery of healthcare - and the transformation of that delivery of healthcare.
Ferris said that it’s critical that the NHS is committed to making sure that patients are informed about how their data is being used. And whilst he added that he had been advised not to make predictions about the future, he also suggested that there would be a central role for the NHS App. Ferris said:
The potential of the NHS App to be a direct delivery of that kind of information and choice process transaction, is absolutely my aspiration. That that be a vehicle for these kinds of [data] transactions.
The NHS App grew in popularity during the COVID-19 pandemic. NHS England recently said that it has more than 22 million users and it was named the most downloaded free app by UK iPhone users in 2021.
Since its launch, more than 10.4 million repeat prescriptions have been ordered and more than 1.1 million GP appointments have been booked via the app. In addition, more than 316,000 people have used the NHS App to manage their organ donation decision, with over 151,000 preferences recorded over the last 6 months.
During the pandemic the App has also been used by citizens to generate a COVID-19 pass to prove vaccination status, meaning that it has played a central role in millions of people’s lives in recent months.
Driving uptake of an app is difficult, but the pandemic has forced people to use it, meaning now that the NHS has an opportunity to capitalize on engagement for further use cases.
Also speaking with the Committee was Simon Madden, Director of Data Policy and Covid Pass Policy at the Department for Health and Social Care, who repeated Dr Ferris’ ambitions. He said:
It's of vital importance that patients and the public understand that they can opt-out. We acknowledge that the opt-out system as it currently is, is complex, and it's not easy to navigate. And there are too many types of opt- outs. There is work underway to look at how we can simplify the opt out landscape.
And I think there's also perhaps a degree of sophistication that we should introduce, so that it's not a blanket opt out…sort of project by project, or sort of category by category.
It's incumbent on us, I think, to enable the public to opt out of specific categories of data perhaps. So that they can continue to contribute to planning, but there may be elements of specific types of research that they may not want to participate in.
So there's, there's an opportunity there, perhaps through the NHS app.
As previously noted, the NHS has historically handled national data projects extremely poorly. Its approach has typically been to plough ahead with what it deems necessary, without effective consultation with the public or the proper mechanisms in place to ensure patients can control how their data is used.
Going forward, Dr Ferris notes that the core principle for the NHS and any use of patient data for research must be ‘using the minimum amount of data needed, but also getting the data that is needed’. He said:
Are you providing all the data that is necessary, but just the data that is necessary? You should always have doubt. Do you actually need to answer that question? Are you minimizing the dataset that you need? And could you do this in an anonymized way? Be specific to the question that is being asked. Use all the information at your disposal to answer that question, but just the information necessary.
Madden added that there is now a sense of urgency in the Department for Health and Social Care to learn from the lessons of previous mistakes. He said:
The pandemic has allowed us to demonstrate the huge value that data has. And the public has been able to see how it can be used in practice. But we need to learn the lessons…from where we didn't engage sufficiently with the public, and to some degree, we took the trust for granted.
Madden said that Ministers have been very clear with the Department that now is an opportunity to reset the relationship with the public. He added that there is a challenge of resourcing for effective engagement, and that it can be expensive, but that it is important to build “sustainable structures” for engaging with patients about data use, in order to build trust. Madden explained:
I encourage all of my teams to think about data in this way - that it isn't an abstract thing. It belongs to each individual patient and the NHS holds that interest. And I say it's not an abstract thing because it's the individual stories and the collective stories of each patient that interacts with the health and care system. That deserves respect and has to be the central guiding principle in how we approach the overall legal framework for handling data.
We want to reset the relationship with the public about data. So that means that that engagement needs to include real involvement. Really explaining the benefits of how data is used and there are some excellent examples of deliberative events that you can hold.
I don't want to announce too much here, Ministers won't thank me for for trailing too much of the strategy, but it's fair to say that the data strategy focuses heavily, right at the beginning, at ways in which we can increase public engagement, increase transparency, build public trust, including through having a data covenant with the public.
So it’s a sort of contract with the public around health data. And also, to look at ways in which, through the NHS, we can set a national standard for public engagement. So not only are we having a sort of gold standard for public engagement from the centre, nationally, but also at every local level as well.