Programme Key Findings and recommendations
Learning together as a system
Delivering a large-scale transformation and improvement programme across the whole of the North of England and a population of 15m was a challenge. The approach taken by the NHSA enabled local ownership of change, adoption and impact. This coupled a facilitating central coordinating hub with regional centres for innovation around health and social care. As a result, we now see thriving engagement within and between regions and in the data-driven improvement they work on. We used the footprints of the northern Academic Health Science Networks (AHSNs) to deliver the programme within four health and care economies:
- North East and North Cumbria
- Yorkshire and Humber
- Greater Manchester
- North West Coast
Having CHC programmes designed and delivered in each region resulted in the local context being taken into consideration including the needs, aspirations and priorities of the people delivering frontline care. This was crucial, particularly for professional and citizen engagement.
Citizens and data
Citizen engagement and approval for working with health data has often been neglected in the health data space, and yet without the conscious and consistent building of citizen trust, the potential for health data to improve lives will not be realised. The Office for Life Sciences emphasises the role of transparency and the need to prioritise the benefits to the health and wellbeing of NHS patients of any use of data. CHC worked throughout the project to build connections with citizens, gain informed consent on the use of data, provide full transparency on the use of data and prioritise improvements in the health and welfare of NHS patients in line with the principles. The work of CHC has been held up by Baroness Dido Harding, Chair of NHS Improvement, as an exemplar of citizen engagement and building trust to realise the potential of health data.
Across over 3000 conversations with citizens on principles that should apply to the use of their data, five clear expectations emerged around:
- Fairness and lack of exploitation
- Transparency and trust
It is gratifying to see these principles becoming part of the national narrative.
The diameter of trust
A key piece of learning has been that working with a population size of 3-5m and then scaling up supraregionally has, undoubtedly, been a success factor by demonstrating reciprocity to our citizens on how their data improves care within their communities. This size of target population is large enough for economy of scale and small enough for a conversation with professionals and citizens about data sharing and change. It is therefore possible to develop systems that are scalable to local need rather than isolated academic research, with embedded capability for managing quality, sharing expertise, and data structure infrastructure for research and innovation.
Delivering new learning health systems
CHC has shown through its achievements the talents and capabilities that are in place to keep delivering successful and impactful projects, truly changing lives and the way we bring the advantages of digital technologies to health and social care. Not just across the UK, but as a global leader too. There is much that can be shared with other UK programmes to ensure the success of those initiatives and retain the support of the public in mobilising their data. The work and outcomes from CHC are reproducible and scalable; in fact, we have acquired considerable expertise and know-how on scaling within the project itself. With future investment we will make the North of England a global player in ethical use of data in healthcare and create a new paradigm of how industry engages with citizens on access to data.
Credit to our sponsors DHSC
The innovation in this programme went beyond the programme delivery side. We are indebted to our funders, Department of Health and Social Care (DHSC), who led on the oversight, and to NHSX. Both were hugely constructive and supportive. The health data landscape is a very different place now thanks to both the investment received and the way in which we were supported to use the funds. DHSC/NHSX took an enlightened approach to partnership within, and management of, the programme. They created an environment where we had the freedom to try new approaches, trusting us to lead while ensuring accountability. As a consequence, we were able to mobilise and empower practitioners and citizens to deliver something that is unique and which will have lasting societal and economic benefits as well as a transformative effect on the health and care system. by Dr Séamus O’Neill, Chief Executive, Northern Health Science Alliance