top of page
Search
  • Jessica Morley

What The F(ederation): Synthesising the many recent data strategies, white papers, and reviews  

Updated: Jul 4, 2022

Introduction

Apparently Government strategies that have implications for NHS data are like other public services - namely buses; you wait ages for one and then they all come at once.


The NHS Tech Vision ‘The future of healthcare: our vision for digital, data and technology in health and care’ was published in October 2018 and the NHS Long-Term Plan was published in January 2019. After that, although there were a myriad of ‘individual’ policy documents published, such as the NHSX what good looks like framework and the NHS’s ‘buyer’s guide to AI’, there were no subsequent strategic documents published until the Laura Wade-Gery Review Putting data, digital and tech at the heart of transforming the NHS published in November 2021. Since April of this year, however, there have been no fewer than 9 major strategic documents published, including:



Collectively these documents represent hundreds of pages, thousands of words, an uncountable number of recommendations, and millions of public pounds. Although for data enthusiasts and policy enthusiasts (like me) this is exciting, it is also a little overwhelming and it has become hard for everyone who pays close attention to this policy area to ‘see the wood for the trees.’ To help with this overwhelm, therefore, I have - in what follows - attempted to bring these various documents together and summarise the overarching, strategic direction and implications for NHS data.


Four Use Cases, Four Goals, and Four Themes

The starting point for understanding how all these myriad documents fit together (and sometimes diverge from each other), is recognising that at a strategic and high level of abstraction, the UK Government (particularly the NHS Transformation Directorate) views NHS data as having four disparate uses:

  1. Direct Care

  2. Managing Population Health

  3. Planning NHS Services

  4. Research (and Innovation)

There are a number of reasons why I personally believe these divisions are somewhat arbitrary and unhelpful, but I will not go into that here. For the purpose of this blog, it is simply necessary to understand that the various strategic documents listed above treat each of these use cases as separate, and thus policy commitments covering one use case do not necessarily cover the other commitments.


As set out in the Plan for Digital Health and Social Care, it is hoped that by combining these four use cases, the Government can equip the health and care system to:

  • Prevent people’s health and social care needs from escalating

  • Personalise health and social care and reduce health disparities

  • Improve the experience and impact of people providing services

  • Transform performance

These are extremely ambitious goals (I will not comment here on their deliverability) and so, to break them down, the various documents make commitments/recommendations at lower levels of abstraction that, in theory, will enable the delivery of these goals. Although these commitments/recommendations are numerous, it is possible to see them as being grouped into four themes:

  • Platforms, Privacy and Security

  • Information Governance

  • Ethics, Participation and Trust

  • Workforce and Ways of Working


Combining these four themes with the four use cases can be used to create a map to help us navigate through the dense foliage of the aforementioned wood.


Direct Care

Goal: Use data to enable integrated and joined-up care.


Aim: Ensure the right information is available for the right person at the right time.


This will be achieved by:

  • Reducing the number of individual data collections

  • Making more detailed individual-level data available from central sources

  • Making this feasible by increasing the reliance on cloud infrastructure rather than physical databases

  • Improve the cybersecurity provisions of these centralised data sources

  • Further enhancing the resilience and protection of these centrals stores by improving the information governance training of frontline staff

  • Improving the ways in which frontline staff use data for decision-making by:

  • providing them with decision-support-tools; and

  • making the workforce more data literate


Specifically the following commitments/recommendations are made (verbatim text):



Population Health

Goal: Use data for public health surveillance


Aim: Ensure the health and care system as a whole can predict, prevent, and (if necessary) respond to threats to public health.


This will be achieved by:

  • Providing regional health and care teams (ICSs mostly) with access to all health and care data for the people they are responsible for caring for via accessible and secure real-time platforms

  • Providing regional staff with the skills and knowledge to analyse the data available to them

  • Requiring regional analytical teams to openly share their analytic code so that specific analyses can be done in the same way in multiple locations

  • Creating an underpinning technical architecture that enables the combining of analytical results from multiple regions when it is necessary to gain a whole-population perspective

  • Revising information governance requirements so that sharing for the purposes of planning is not blocked by monopolistic behaviour of multiple data controllers

Specifically the following commitments/recommendations are made (verbatim text):



Planning

Goal: Use data for the effective and efficient commissioning and monitoring of services.


Aim: ensure the right services are provided in the right geographical locations; providers are paid for the services they provide; and unwarranted variations in care are detected and investigated.


This will be achieved by:

  • Reducing the number of individual data collections

  • Providing central analytics teams with access to aggregate performance data via secure data environments

  • Providing central analytics teams with the skills and knowledge to analyse the data available to them

  • Providing senior management with data literacy training to enable them to be ‘smart customers’ of data

  • Ensuring data is used for performance management in a way that is sensible and acceptable to both publics and professionals

  • Requiring central analytics teams to openly share their analytic code so that specific analyses can be done in the same way in multiple locations; and so all analytic code can be inspected for errors

  • Revising information governance requirements so that sharing for the purposes of planning is not blocked by monopolistic behaviour

  • Put in place standards and mechanisms that ensure transparency of data use for analytical purposes

Specifically the following commitments are made (verbatim text):


Research

Goal: Use data to analyse patterns of disease; identify new treatments; monitor the efficacy and safety of existing treatments; drive innovation; and more.


Aim: ensure researchers can access NHS data to conduct lifesaving research without compromising patient privacy and public trust.


This will be achieved by:

  • Reducing the extent to which the system relies on providing researchers with access to data via insecure ‘Pseudonymise and Disseminate’ methods

  • Providing researchers with access to population-level datasets via accredited ‘Trusted Research Environments’ (referred to as Secure Data Environments in Data Saves Lives) that meet a set of minimum technical specifications regarding privacy protection, governance, and open working

  • Simplifying Information Governance, once Trusted Research Environments are in place, to ensure it does not act as a barrier to life-saving research and innovation but continues to provide appropriate scrutiny regarding purpose of research

  • Upskilling the academic workforce to work in modern, open, computational ways so that all research code is shared openly for scrutiny and re-use

  • Funding research into the development of secure analytical platforms, and code and methodological innovation for data curation, privacy preservation, and more

  • Putting in place standards and contractual requirements for those looking to use NHS data for commercial purposes to ensure a fair return on investment, and public acceptability

  • Improving the quality of ‘Patient and Public Involvement and Engagement’ activity conducted by researchers

  • Putting in place standards and mechanisms that ensure meaningful public transparency over data use for research purposes


Specifically the following commitments/recommendations are made (verbatim text):




Conclusion

Once the information, recommendations, and commitments in each of the myriad documents has been synthesised in this way it becomes clear that, even if the exact nature of how varies between the four data use cases, the what of the overarching strategic aims remains fairly consistent throughout:


  • Reduce the number of places data is collected, stored, and disseminated.

  • Instead ensure it is made accessible to trusted individuals, teams, organisations, and businesses (where appropriate) via a smaller number of secure, performant platforms that provide greater privacy and security protection.

  • Upskill the clinical, analytical, academic, and senior management communities to ensure they are all capable of working in a modern, open, collaborative fashion and all have the required digital and data literacy.

  • Put in place legislation, standards, and mechanisms that ensure NHS data cannot be monopolised and is instead made readily accessible (in a secure fashion) for those who need it to provide care; monitor population health; manage & plan services; and conduct high-quality research.

  • Put in place legislation, standards, and mechanisms that ensure meaningful transparency and accountability over how data is used - particularly for secondary purposes.

  • Standardise the ways in which patients and publics are informed and involved in all uses of NHS data to ensure all uses are socially acceptable as well as legally com

Of course there are some areas where the how of one use case appears to contradict with the how of another. Similarly, there are some areas where the how is more detailed than others. This is natural, and to be expected, when an extremely important area of policy is undergoing such a rapid and intense period of development and change. The important thing is that at least we now know where we are going.







3,459 views0 comments

Recent Posts

See All
Post: Blog2_Post
bottom of page