An Introduction by Northern Health Science Alliance

The original vision for CHC was developed by Professor Iain Buchan and, as with all mass movements, it has been dependent on countless leaders and contributors: not least the Directors cited later in section 1; the respective teams in the regions, the CHC Hub and the NHSA, who have helped shape and deliver it. We extend our thanks to all involved.


The programme demonstrated the NHSA’s ability to mobilise, across our population of 15m people:

  • Our world-class academic expertise in health data.

  • Our sustained and meaningful discussions with our citizens.

  • Our outstanding health and care system, to deploy the findings of the programme and create impact for the health and wealth of the region.


The £20m pilot Health North: Connected Health Cities was funded by the Department of Health in 2015. It recognised the potential value of health data, with appropriate care system and citizen engagement, to both drive improvement in the provision of care and to create an economic asset across the North of England that was understood and supported by its people.

ACHIEVEMENTS AND IMPACT

Connected Health Cities has:

  • Put the citizen at the heart of this work and produced an exemplar of involvement and consultation, building trust amongst our patient population and developing a learning health systems approach that can be replicated.

  • Co-created the programmes through innovative engagement projects, including citizen juries and the hugely successful social media campaign #DataSavesLives.

  • Established Trustworthy Research Environments (TREs) within regional Data Arks to deliver a common governance and operational platform, allow data interrogation and research to meet all the required standards, and support data-driven innovation and improvement.

  • Delivered 16 pathway projects which are continually improving care in the NHS - saving lives, money and capacity.

The impact of CHC includes:

  • Over 10m people now have connected health and care records across the North of England.

  • Over 40m consultations and episodes of care have been analysed: saving time, money and leading to better patient care and future care improvements.

  • At least £30m of investment has been secured through CHC, new jobs created, and small businesses and industrial partners supported to develop products and services with the NHS.

  • Early indications show an estimated £150m could be saved across the care system.

  • 20 Acute NHS Trusts, 550 GP Practices and 10 universities have been brought together to innovate and improve care through joint working.

  • The Great North Care Record was accessed 1.5m times last year and is saving the North East’s NHS at least £8m a year.


LEARNING TOGETHER AS A SYSTEM

The North of England is a vibrant life sciences cluster. The cluster includes leading academic and hospital expertise in digital health, some of the best care providers in the UK, engaged citizens, and innovative companies.


CHC’s ground-breaking Learning Health System (LHS) was created to put informed consensual use of citizen’s health data at its heart. CHC developed, tested and implemented continuous improvement within the health and social care system of the North of England with measurable benefits for patients, their families and their communities.


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 NENC

  • Connected Yorkshire CY

  • Greater Manchester GM

  • North West Coast NWC


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 for any use of data (1). 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 (2).


Across over 3000 conversations with citizens on principles that should apply to the use of their data, five clear expectations emerged (3) around:

  • Agency

  • Reciprocity

  • Fairness and lack of exploitation

  • Privacy

  • Transparency and trust

It is gratifying to see these principles becoming part of the national narrative (4).

THE DIAMETER OF TRUST

A key piece of learning has been that working supraregionally with a population size of three to five million demonstrates reciprocity to people 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. Because of this it is 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, changing lives and the way we bring the advantages of digital technologies to health and social care. This is 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; within the project itself we have acquired considerable expertise and know-how on scaling. 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.

THE UNIQUE VALUE TO THE WHOLE UK OF INVESTMENT IN THE NORTH

The UK’s opportunity to lead globally in digital health relies on calling citizens and practitioners to arms in system-wide data and health tech innovation that involves all communities and delivers multidimensional value.


Connected Health Cities successfully delivered data sharing and digital innovation from deprived regions and represents a very high value opportunity for the UK. Innovative involvement of patients, publics and practitioners have been key to this success.


Citizen involvement and civic pride are key to harnessing whole system data and analytics without controversy. This approach is also key to equitable economic growth in the digital health sector, avoiding problems such as large tech company using personal data from deprived communities to train algorithms that generate net benefits in a wealthy community, thereby compounding inequalities.


The public understand this and media coverage of Connected Health Cities has been overwhelmingly positive with the #DataSavesLives movement spreading as far afield as Australia.

CREDIT TO OUR SPONSORS DHSC

The innovation in this programme went beyond the programme delivery side. We are indebted to our funders, the 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.

THE FUTURE

Connected Health Cities demonstrated that getting people involved and informed about their data use is integral to a successful system and that data quality, availability and interpretation improve with local involvement.

The North of England is well-placed within the UK to drive health data and tech innovation in major areas of need with the highest disease burdens, grave inequalities and the greatest need to economic growth. It does this in potentially the UK’s most valuable data-generating communities and in a civic way that optimises implementation and sustains innovation.

The learning, capability, networks and organisational memory of Connected Health Cities should be sustained as an opportunity to embed the use of health data into the health and social care system. The approach has saved lives and money with an 8:1 return on investment. It has generated effective, exciting new ways to use health data with the citizen at its heart.

The original funding of £20m was intended as phase one; a three-year pilot and demonstrator. We now have an exceptional opportunity to deliver the next phase, Civic Data Co-operatives (CDCs) to scale-up and rollout the value delivered and create a globally important asset in the North of England.

CIVIC DATA CO-OPERATIVES: BUILDING ON CONNECTED HEALTH CITIES

Civic Data Co-operatives linked in a supra-regional grid by national digital services are NHSA’s vision for phase 2 of Connected Health Cities across the North. Data is a currency for inclusive economic growth and service improvement. CHC demonstrates there is a diameter of trust within which the public and practitioners are comfortable sharing data as part of civic belonging and pride. For sustainable health data & tech innovation, this diameter needs to be large enough to have potent data yet small enough to have the social license of meaningful public involvement.


When the generators, stewards and consumers of data are in one civic system they can hold one another to account for good governance as a tangible social value chain. Data governance activities will be shaped by citizens and be accountable to the public through civic leaders (such as devolved administrations), within a diameter of trust.

The CDCs will:

  • Link to trustworthy national infrastructure wherever possible to link data while preserving individual privacy.

  • Contribute as part of a national/internationa grid of regions that can borrow strength from larger numbers of data across the network (e.g. for studying rare diseases).

  • Support the sharing of human analytic resource as civic systems are overwhelmed by requests for data analyses.

  • Broker links between smaller/local and larger partner companies in creating inclusive economic growth through the co-development, evaluation and adoption of data-driven technologies.


The CDC grid will enable regional cooperatives to borrow strength from each other via shared digital resources, a common, continuously-improving operating model, and a united interface to other UK and international regions with similar needs.


In funding phase 2, Government will unlock the huge potential of the health data, digital capabilities and care intensity and excellence across the North.


This can help reposition England’s health and social data strategy from a limited national hub-spokes model to an extensive network of regional cooperatives sustaining strong data science embedded in health and care systems with communities that trust, respect and nurture them.

by Dr Séamus O’Neil, Chief Executive, Northern Health Science Alliance

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