The NHS has made significant progress in improving its IT and use of data over the years. But it has also experienced some high-profile setbacks and failures. This is why well-intentioned initiatives like General Practice for Data for Planning and Research (GPDPR), care.data, and the National Programme for IT now serve as history lessons. They remind us of how vital it is to communicate and engage effectively with the public and professionals to maintain trust in how the NHS handles people's data.
As the National Data Guardian, I want to help the NHS avoid any further setbacks on the path to progress, and so I find myself asking, "What role can I play in ensuring that those lessons from history have been learnt?"
This question has been brought into sharp focus in the context of the NHS Federated Data Platform (FDP), currently being procured by NHS England.
The platform aims to connect disparate IT systems across health and care. This will enable frontline staff and those managing our care services to access essential tools and information in a safe and secure way, allowing them to coordinate, plan and deliver care services more effectively. If designed and delivered correctly, this new system could have a transformative impact on the NHS and help support its sustainability longer-term. However, unfortunately but understandably, it has been receiving some negative attention that merits a thoughtful, considered response.
With this in mind, I am publishing this extended blog to:
- reassure people that I have heard their questions and concerns about the FDP programme and that I have raised them with NHS England
- provide advice to the system on how it might build bridges with the public and professionals through its upcoming communications and engagement work
I last published my thoughts on the FDP programme in November. Since then, I have continued to speak to and advise the Government and NHS leaders. I have also heard the more cautious and sceptical voices. Members of the public, healthcare professionals, journalists, MPs and campaign groups all continue to raise concerns about ethics, privacy, its likelihood of success, procurement, and cost. Some of these concerns have arisen because public discourse about one of the potential commercial suppliers, Palantir, has been particularly contentious.
Research on public attitudes to data use and commercial involvement
Commercial interest in, and proximity to, NHS data often makes for an uneasy conversation. Fortunately, there is a wealth of research available on how the public feels about this topic, which we can use to inform those discussions.
Most studies focus on people's opinions in situations where commercial companies are seeking access to NHS data for research and innovation projects. However, in the scenario of the FDP procurement, the company involved will be a software provider. Despite this difference, the research still offers valuable insights for the FDP programme. According to this research, the public generally supports commercial involvement provided that specific conditions are met to their satisfaction:
- A commitment to authentic communications, engagement, and transparency
- The rationale for commercial involvement is made clear
- The external organisation can prove to the public that it is trustworthy
- There is a demonstrable public benefit back to society or the NHS
- Public benefits outweigh the commercial benefit
- There are adequate safeguards against improper use
These six prerequisites capture the key factors that influence people's decisions about whether to support or oppose NHS initiatives with significant commercial involvement.
And the importance of the first point on the list cannot be emphasised enough. The value of communications and transparency to public acceptance is a thread that runs through all research into data use.
Recent experience with the General Practice Data for Planning and Research programme is a prime example of what happens when communication and transparency fall short. If a programme does not have a strong enough voice in the public discourse and there is a lack of trust, it creates a knowledge gap. And in this gap, alternative narratives can take hold, becoming a breeding ground for speculation, misinformation and discontent. Where this discontent is not engaged with, it quickly grows into groundswells of opposition, making it more difficult to build or earn trust going forward.
In turn, this manifests as a concerning rise in opt-out rates. In the past, some people have registered type 1 and national data opt-outs as a way to demonstrate their lack of trust in how a specific programme or initiative is handling their confidential data, most recently in relation to GPDPR. If opt-out rates now rise considerably further, it would be to the serious detriment of health research and planning nationally.
Advice to the system
This is where the question, "What can I do to ensure that the past does not repeat itself?" finds a clear answer for me. The most important thing is to try to ensure that communications from NHS England engage head-on with the questions and concerns people have been raising about the programme.
For a while, I have advised NHS England that it should be making every effort to talk to the public and professionals about the FDP. In Data saves lives: reshaping health and social care with data, the Government lists as its first aim a commitment to improving trust in the health and care system's use of data. As public concerns about the FDP grow, I recently reminded officials that now is the right time to make good on that promise in relation to the FDP, so that it does not lose public support and so that planning and research do not suffer.
In response, NHS England last week provided me with a high-level plan for communications about the platform. Getting the details of that plan right will be crucial. The interventions need to be meaningful, and people need chances to ask questions and get answers.
I have also been advised that the Professional Record Standards Body (PRSB) has been commissioned to deliver an engagement project. It will work with health and social care professionals and patient-representative groups to consider how they can help to co-design the FDP and build greater awareness, understanding and support for the programme. Learning from and acting on that work's findings will be valuable, and I would hope this level of engagement is ongoing. I look forward to hearing more about how people's views are shaping the programme approach and the platform itself.
These plans come later than I would have liked, but they are a start, and a step in the right direction, and I hope they can begin to bring more balance and perspectives to the public discourse.
As NHS England now works out the finer details of its communications plan, I would like to help by advising where the focus is most needed. Below are three key areas I suggest should be prioritised in its immediate communications efforts. Given the concerns I've heard raised publicly and privately, I outline below questions I suggest need to be addressed to the public's satisfaction. As National Data Guardian, I have personally already received answers to some of these questions during discussions with the programme. But ultimately, it is the public's information needs that need to be met.
1. Show the likely (not simply hoped for) value to patients and the NHS
Returning to the topic of commercial involvement, for people to agree that procuring software from any commercial company at this cost to taxpayers is worth it, they need to understand what it will do, see the expected benefits, and be reassured that helping the NHS is at the heart of this project. These are the questions that should be addressed:
- what is the overall purpose of the programme and its scope?
- what is the nature of each use case (e.g., direct care, population health etc)
- where does public choice come into play, and how will the national data opt-out work?
- have clinical and analytical end users been involved in designing the system's requirements?
- where is the need for a FDP coming from amongst providers and ICS systems on the ground?
- the NHS already has many IT systems that supply analytics about what happened yesterday - what problems will the FDP solve for those coordinating and delivering care in real-time?
- staff need better, more integrated, and secure IT systems that actually work for them and reduce their administrative burden - how will clinicians be assured that the FDP will help meet this need?
2. Demonstrate the integrity of your decision-making process
Procuring data systems from commercial suppliers is routine work for the NHS, and it has standard procedures to ensure this happens fairly. However, this procurement has attracted public attention because of the contract size and the ongoing interest in the existing relationship the NHS has with one of the potential suppliers. People have strong opinions about the involvement of technology giants in the NHS more broadly, with concerns about commercial propriety, ethics and motivation often expressed.
Because of this, a genuine commitment to transparency is crucial, especially as the contract will be awarded against the backdrop of the COVID-19 inquiry. Quite rightly, the public spotlight is firmly trained on how procurement decisions are being made in health and care. People want to know who is receiving public money and on what terms.
To demonstrate the safeguards in place to ensure the competition is fair:
- explain who is making decisions, how they are being made, and on what basis
- provide information on how the incumbent supplier advantage has been mitigated
- clarify how end-users within Trusts and ICSs have been involved
- provide more details on the pilot projects and how experience from them has contributed to the programme
- demonstrate how critical voices are being heard
- explain what independent technical scrutiny has taken place to probe the project
- evidence how changes have been made in response to concerns raised
- explain when the programme will be evaluated and how success will be measured
It is important to ensure that the public is satisfied with the information provided about the procurement exercise. Failure to do so may lead to ongoing doubts about the process's fairness and the strength of the programme's governance and accountability.
3. Provide credible assurance about the relationship with the supplier
Whenever the NHS collaborates with commercial partners, which includes IT suppliers, it is understandable that people may have questions about the nature of the partnership. They want to feel confident that the power dynamics are not skewed in favour of the commercial company and that the NHS remains in the driving seat. In the case of this specific procurement, people also want to understand the nature of the supplier's relationship with their data. So people can reach an informed opinion, it's crucial to present the facts clearly.
- what will the supplier be able to access and do, or not do, with people's data?
- what are the safeguards and limits on what it will be able to access?
- what are the meaningful deterrents and sanctions against any improper use?
- how will NHSE ensure that it's not a black box solution and that analysts can effectively use the system and understand its workings?
We have also heard concerns about vendor lock-in. Longer-term, people want to understand the arrangements in place to ensure the NHS does not find itself locked into a relationship with any specific vendor. The consequences of which can include rising costs, no redress against inadequate performance, and prohibitive charges for changes. People want to be assured that the NHS will maintain control and that its own workforce will continue to upskill in digital, data and technology. And that it can terminate the partnership as and when necessary, without compromising patient care or incurring significant costs.
Some final thoughts on transparency
As a psychiatrist, I spend a lot of time thinking about what healthy relationships look and feel like, both between people and organisations. In times of pressure, organisational anxiety can sometimes manifest in unhelpful ways, both within organisations, and between organisations and the public. With that in mind, I hope NHS England avoids any tendency towards overly cautious communications in the face of public criticism - for example, out of anxiety that responding to concerns will substantiate them or fuel them further. In my experience, guarded communications only further alienate those already inclined to distrust.
Transparency, openness, and a clear presentation of the facts will be key to success here. Whilst explaining the FDP's planned benefits is important, so too is confronting risks and concerns. This allows people to weigh up the facts and draw their own conclusions. I understand this may involve taking risks with communications. Committing to transparency also requires some boldness in acknowledging unknowns. It's OK to say you don't have all the answers yet or that procurement laws prevent disclosure. But it is important to say it. Staying silent on certain areas, even for a good reason, can lead to suspicion of deceit, with people becoming more influenced by what they believe is being withheld rather than what is being shared.
People will accept that there are some details that can only be worked out in the future, once the supplier is in place, if they can be assured that there are some clear, protective 'red lines' around the programme now - and that public and professional communications and engagement will continue once the contract is awarded.
In my earlier blog on the FDP, I spoke about the importance of balance. This programme's intentions are good, and I do not want the public discourse around it to become a polarised battleground. But to avoid this, NHS England must address the knowledge gap: building bridges between the programme, the public, and professionals on the ground. And this will involve listening, learning, and evolving the programme and its communications as it does so.
