Had I written this a couple of months ago, I probably would have used the title ‘How to deliver data-driven health and care’. However, a colleague recently pointed out that data is only valuable if used to generate insight that can inform decisions, which in turn improve patient access, experience and outcomes – sometimes referred to as ‘actionable insight’.
So, how do we enable innovation that delivers insight-driven health and care?
Retaining the trust and confidence of patients and the public
Robust and meaningful patient and public involvement and engagement (or ‘PPIE’) must be the foundation of our work. The findings from multiple public attitudes studies tell us that for people to support their information being made available to enable research and innovation, those using the data must be able to explain how their work will deliver a benefit back to society. Moreover, for public trust and confidence to be maintained, it requires a continued commitment to honesty and transparency about data usage.
In Yorkshire and Humber, we have a strong track record of incorporating robust PPIE into the delivery of large-scale data programme, including the National Pathology Imaging Cooperative and DATA-CAN: the Health Data Research Hub for Cancer. My colleagues at the AHSN, Adele Bunch and Graham Prestwich, provide fantastic PPIE leadership across our region.
A deep understanding of the problem
The health and care system is undeniably complex and seeking to produce insight that is truly actionable requires a deep understanding of how the system functions on a day-to-day basis. Only once that context is understood can we design studies that will yield the actionable insight we seek. This requires close collaboration between innovators and healthcare professionals that is based on mutual respect and a recognition that each partner brings different but complementary skills and expertise. Ongoing collaboration with healthcare professionals is equally important as studies begin to deliver new insights as it becomes a route through which they are actioned within the system.
At the Yorkshire & Humber AHSN, my colleague, Dr Graham Walsh, leads our engagement with our colleagues working in the health and care system in his role as Medical Director. This is further enhanced by the ongoing work of our Workforce Challenge Hub, which is led by Barbara Conneely and is itself an excellent example of collaboration with our colleagues at Health Education England.
The Workforce Challenge Hub provides a workforce transformation toolkit to support stakeholders with workforce challenges across our whole region, a transformation register which enables the sharing of good practice and innovation expertise to support workforce transformation projects in line with ICSs’ workforce priorities.
Availability of high-quality data
Only once a problem is understood can we identify what data must be analysed to identify the potential solutions. At this point, data availability often becomes a majority barrier to progress. In 2020, the Association of the British Pharmaceutical Industry (the ‘ABPI’) published a report entitled ‘Unlocking the promise of UK health data’. The report indicates that ‘unpredictability and inefficiency of the data-finding and access process in the UK’ is one of the most significant issues faced by pharmaceutical researchers. Anecdotal evidence also indicates the same is true for researchers based in the NHS and academia.
In recent years, Health Data Research UK has sought to address this challenge through the introduction of its Innovation Gateway, which provides discoverable and searchable metadata regarding data that can be accessed by innovators (subject to approval). The recently announced Secure Data Environments for Research and Development (SDE) will take this one step further by providing secure infrastructure incorporating advanced analytical tooling through which approved researchers and innovators will be granted access to high-quality, pseudonymised data from a range of sources. I’m working with colleagues across the region as we develop the SDE for Yorkshire and Humber and will provide an overview of the programme in my next post.
A workforce that can generate insight from data
It is widely acknowledged that skills and experience relating to data science and analytics are in high demand across virtually every sector of our economy. Here in Yorkshire and Humber, we have a strong pipeline of talent flowing the region’s universities and Further Education colleges. In addition, there is a strong commitment from colleagues working in system leadership roles, including the Integrated Care Boards, to make the health and care system an employer of choice for these talented individuals.
Whilst it is important to ensure we have sufficient capacity amongst our data science and analytics workforce, it is equally important to ensure we attract and retain colleagues from a diverse range of lived experiences. For this reason, I am delighted that Yorkshire & Humber AHSN will be a host organisation for the Health Data Research UK Black Internship programme later this year. If you interested in joining us as a host organisation, further details are available here.
Bringing everything together
In this initial blog, I have just provided a helicopter view of some key areas that need to work in tandem must be combined if we want to ensure we use health data better to help improve patient outcomes, implement effective service delivery and release pressure on healthcare systems.
As Director of Digital Partnerships, I work with colleagues across the region and nationally to bring all these different elements together to achieve our shared vision of delivering insight-driven health and care that improves patient access, experience and outcomes. If you have any questions or would like an initial chat to find out more about our work in this area, please reach out and get in touch.