December 13, 2021

First steps towards realising the vision of a London health data strategy

The Conversation with Londoners has helped shape a health data strategy which brings together the NHS, research community, and citizens, as part of a shared vision to improve the health and wellbeing of Londoners using the power of data at scale. ‘Pathfinder’ health improvement projects, announced this week, are a first step towards realising this ambition and making this vision a reality.

James Friend, Director of Digital Strategy for NHS England (London Region), and Deborah Millington, Citizen Representative for the London Health Data Strategy Programme, (pictured) share more.

James

“A pathfinder is defined as one that ‘discovers a way’ or ‘explores untraversed regions to mark out a new route’1. It feels very apt then, that our four health improvement projects announced this week – with an aim to demonstrate the use of data at scale to better the health and wellbeing of Londoners – have been described as pathfinders.

“Through the OneLondon Citizens’ Summit, held in February and March 2020, Londoners told us that they expect health and care data to be consistently joined-up to support proactive care, planning and research. They set out specific conditions against their recommendations that should be in place in order to maintain trust and confidence. This included how information should be safeguarded and accessed in a safe setting, who should have access (including commercial organisations), and how benefits should be realised and distributed across the NHS. Participants were also clear that citizens should be involved in ongoing policy development and governance around the uses of health and care data, and of the oversight and scrutiny role they expected elected officials to play.

“Based on these recommendations, a health data strategy for London was developed (commissioned by NHS England (London Region) and the capital’s leading research universities). In line with public expectations, the strategy presents a coordinated, partnership approach to safely join-up health and care data across London.

“Over the next 12 months, these four pathfinder projects will tackle some of London’s key health challenges to deliver measurable improvements. Most importantly, their aim is to improve outcomes for patients and the population. However, in doing so, they will also help to respond to the challenge set for us by the Citizens’ Summit, and to design and develop the systems and trusted health data environments needed to link data safely and securely so that it can be used to plan and improve health and care services, and for research and development; for example, improving treatments and medicines and preventing illness. Fundamentally, these projects are aiming to get patients to the most appropriate environment for their assessment, treatment, and care, and to make the right thing to do for the patient be the easiest thing to be done by the clinician.

“Currently, data that could tell us whether these aims are being delivered can be fragmented, inconsistently structured, and cumbersome to access. This limits the capability of clinicians to harness the data to drive insights and health and care improvement. The vision of the London Health Data Strategy is to join-up data from across the system to create a trusted health data environment that will drive improvements in the health and wellbeing of Londoners.

“This shared vision has culminated in a London-wide partnership programme between the NHS, research community, and citizens, that’s on a mission to improve people’s health and wellbeing, and solve health and care challenges, using the power of data at scale. We have called this the London Health Data Strategy Programme.

“The pathfinder projects are key to this, and will act as real-world demonstrators to drive collaboration and partnership working between NHS and academic institutions; evidence sufficient data join-up to support health improvement projects at a pan-London level; and evidence the effectiveness of trusted health data environments.”

Deborah

“The Citizens’ Summit, as part of a wider Conversation with Londoners, was key to understanding public expectations around data use. For the first time, it provided clear instruction from the public to policymakers and health and care leaders, as to how they should be using data in a way that builds public trust and confidence.

“I was one of the 100 participants (reflective of the capital’s diverse population) who took part in the summit, and helped form the recommendations and conditions for the use of health and care data in London. It is great to see these expectations starting to be delivered through the London Health Data Strategy Programme.

“I believe that it’s vitally important for the public to continue to be involved in ongoing policy development, not least to continue to build trust and confidence in this space. As a summit, we set out that: 1. two or three citizen representatives should sit on decision-making boards with people who work in health and care as well as experts; and 2. there should be a diverse citizens’ advisory group where people are recruited to be reflective of London, supported with the right information to understand the issues.

“The London Health Data Strategy Programme is now taking this forward, with plans underway for further deliberative engagement with a reflective group of Londoners to 1. explore and deliberate key issues and challenges facing the programme to shape ongoing policy and governance, and 2. help to develop the business case. Three Citizen Representatives, myself included, have also been appointed to sit on the programme’s Stakeholder Board, along with partner representatives from across the health and care system and academic institutions. In this role I will continue to have input and oversight of this important programme as it develops. It also means I can help to ensure that the public and patients continue to be involved and engaged at every step.

“To date, this has included assessing, interviewing, and selecting the successful pathfinder projects that James has talked about. For me, it was vital that each of these projects had a robust PPIE strategy, so it was reassuring to hear about the different and wide-ranging ways that the public and patients will be involved and engaged throughout the lifespan of the chosen projects.”

More information about the pathfinder projects can be found here.

Read the London Health Data Strategy here

Read more about the OneLondon Citizens’ Summit here, including the report detailing the recommendations and conditions formed by participants.


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