By Emma Lagerstedt, Policy and Engagement Manager
"We call ourselves systems and yet behave in silos and then we wonder why we fall apart again." - Director of Strategy, North East and Yorkshire“
Today, Understanding Patient Data, in collaboration with our hosts at the NHS Confederation and its ICS Network, publishes a new report on the use of data within Integrated Care Systems (ICSs), which we hope will offer valuable insights for policymakers, healthcare leaders, and the public and improve transparency and understanding about how ICSs collect, use and share patient data.
We worked in collaboration with White Tail Consulting who delivered a series of interviews with senior leaders in ICSs to understand their perspectives on the use of data is currently working, examples of best practice, and challenges and opportunities.
About the project
ICSs are responsible for bringing together health and care organisations to deliver joined up care and improve population health across 42 local areas in England. The success of ICSs in delivering integrated care and improved health outcomes relies on effectively harnessing joined-up patient data, but recent digital maturity assessments show that there is large variation in how ICSs across the country are using data. We wanted to understand how ICSs are currently collecting, using and sharing patient data, what challenges they are facing, and what the opportunities are for improving the way patient data is used.
We aimed to explore:
- What the current state of sharing, accessing and using patient and other health and care service user data in ICSs is
- What the main opportunities for using patient and other health and care service user data in ICSs are
- What the current state of sharing patient and other health and care service user data with organisations outside of the ICS, including national bodies, the Secure Data Environment network and other ICSs is
- What ICS leaders’ perspectives on public and patient understanding of and attitudes about the use of patient data by ICSs are
To help us understand more about this topic, our research partners undertook 23 core interviews with participants across 11 ICSs, followed by interviews with a further 21 participants to develop the case studies, which will be published shortly.
The interviews formed the basis of our research report, subsequent recommendations, and case studies. Based on the interviews we also created a plain English summary of the project.
Following the fieldwork, we held a virtual roundtable discussion with participants drawn from the fieldwork and other ICS data leaders to validate the findings and refine the report’s recommendations.
Key findings
- Variation in data maturity, sharing and use: The study reveals significant variation in the maturity of data infrastructure, organisational capacity and approaches to using data. While some systems have advanced technical infrastructure and are able to effectively utilise data for individual care and population health management, others are falling behind, which risks impacting on quality of care.
- Infrastructure vs. organisational culture: The development of infrastructure and analytics capabilities have outpaced organisational culture and data skills among members of staff. Recruitment and retention of skilled staff remain a challenge for systems, and clinical and other staff require upskilling to make the best.
- The long-term view: Many ICSs perceive challenges in balancing the demands of operational reporting with more strategic, analytical uses of data, and would like more clarity on national long-term plans for the use of data across the English NHS.
- Engaging patients and the public: All ICSs recognise the importance of engaging patients and the public regarding data use. However, there is room for improvement in this area and there are differing views on who should bear responsibility for this engagement.
- Opportunities ahead: Participants reported that there are opportunities for improving the use of patient data in the future and that collaborative efforts among ICSs, and improved engagement between ICSs and national policymakers can drive improvements across the country.
What next?
UPD will share the findings from this research widely with people working on the use of health data in the NHS, both those in ICS roles and policymakers within NHS England and the Civil Service, to influence health data policymaking and practice. We will also share the report with healthcare organisations, members of the wider data community, and other policy stakeholders such as patient advocacy groups and think tanks. Over the next few weeks we will publish a series of case studies which will illustrate how the use of data has delivered benefits for patients in four ICSs.
We appreciate the efforts of the team at White Tail Consulting for their work on this project and the contributions from our colleagues at the NHS Confederation and the ICS Network. We are very grateful for the insights shared by our research participants which shaped the findings and recommendations.
If you have any questions about this work, or would like to discuss the topic further, please email us at hello@understandingpatientdata.org.uk.
Links
Web page for the project including the full report, recommendations and plain English summary