Coda Network Seminars
A key part of the work of Coda is sharing knowledge and best practice around health data identification, collection and use. Our six-weekly seminars are central to this. They are intended to be open and flexible, and anyone can join us. They are intended to fit as much as possible with your other commitments, taking place at 12noon and lasting no more than an hour.
Notes from previous sessions and details of forthcoming sessions are given below.
If you want to join us as a participant, or want to talk about projects and programmes you’ve been involved in, contact us at info@easternarc.ac.uk
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The Kent Marmot Coastal Region Programme is a proactive approach to health inequalities using the Marmot Principles and resulting in a long-term plan for sustained change in coastal areas in Kent.
King’s Lynn and West Norfolk has become a similar ‘Marmot Place’,adopting eight evidence-based principles to reduce health inequalities, developed by Sir Michael Marmot and his team from the University College London’s Institute of Health Equity (IHE).
This session will look at what it means to be a ‘Marmot Place’, and assess the current work being undertaken in Norfolk and Kent.
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The Coastal Navigators Network was established by Breaking Barriers Innovation (BBI) as a strategic collaboration between NHSE and six Integrated Care Boards (ICBs). It responds to the challenges of poor health and economic inactivity by tackling the social determinants of health through scalable, high-impact solutions.
This session will look at the work of the CNN to date, its findings, and its proposal to continue and expand the work in the future.
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Dr Emily Murray, the Director of the Essex Centre for Coastal Communities, has recently completed and published findings from a research project on the mental health of young adults in coastal communities, compared to their peers inland. It had used the UK Household Longitudinal Study with follow up interviews.
The results showed that there was a significant difference between the two, with a lower mental functioning on the coast.
This session will consider possible environmental reasons for this, including economic (such as employment and housing), social (such as crime), education and infrastructure. In almost all measures the indicators were worse for those living by the coast, other than access to green space and air quality. .
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In May 2025 Norfolk and Waveney ICB hosted a one-day workshop to hear from regional stakeholders who collect, collate, analyse and use data for public health in order to understand and learn from the challenges they face and the opportunities they have created.
This session will hear about the session, and assess what worked, as well as anything they would do differently. As such, it is intended to help those who are seeking to train colleagues in their regions. It will also hear from some speakers who took part, outlining ‘data-driven interventions to improve population outcomes.’
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Dr Liz Ford (Associate Professor in Health Data Science, Brighton and Sussex Medical School) and Magali Ruffier (Senior Programme Delivery Manager (Health Informatics), Health Innovation East) gave an overview of the background to, develop of and future for the NHS Secure Data Environments (SDEs).
Background
In 1987 the Valued-Added Medical Products (VAMP) Research Databank was created to hold GP electronic patient records. This developed into the General Practice Research Database (GPRD) in 1994. Although beneficial to epidemiological research, only around 8% of GP practices contributed to them.
In 2012 the Health and Social Care Act was passed, leading to the establishment of the Health and Social Care Information Centre (HSCIC), which established care.data. This was intended to centralise patient data from all GP and hospital records to improve healthcare delivery.
However, following negative feedback, it was postponed in 2014 and eventually scrapped. In 2021 its successor, GP Data for Planning and Research (GPDPR), was launched, but this suffered a similar fate, being postponed and later scrapped in the same year.
Since 2022 a framework for data collection has been established, starting with a £200m investment in 2022, followed by the Goldacre Review, the Data Saves Lives Strategy, and the UK Science and Technology Framework.
The resulting NHS England Data for R&D programme funded 11 interoperable regional SDEs to provide approved researchers access to data within NHS-controlled spaces, rather than sharing data directly. The SDEs also link with genomic data assets and nationally-curated datasets and trials data.
Current situation
A three-stage process is in place for establishing SDEs.
- Business case and planning: Initial funding to develop 11 sub-national SDEs across England
- Operational network of 11 separate SDEs established: including collaborations on public engagement and outreach.
- Fully federated network of SDEs: to act as a single, NHS-wide, world-leading innovation engine.
Progress is currently at the second stage. The new system allows for:
- A single ‘front door’, with a single application form, with external analysts welcome.
- Data to be held securely by each integrated care board (ICB), to ensure patient privacy and security via local data controllers.
- A federated approach to collaboration and comparative analyses.
The SDE infrastructure could be used for the following:
- Bespoke datasets: Requests for project-specific datasets outside of what is currently available in the SDE, including linkage between NHS & research datasets.
- NHS organisation-level workspace: NHS providers can have their own workspaces within the SDE to conduct their own analysis or safely collaborate with external parties.
- Re-use of existing research datasets: These datasets could be housed within the SDE to allow re-use for other projects (subject to required approvals).
- Cohort discovery across multiple providers: Minimum datasets could be harmonised by mapping to OMOP Common Data Model, allowing querying of counts across sites to build a project cohort for a Data Access Request
- Pull-through of datasets discovered via cohort browser: OMOP and the original datasets could be requested, which are de-identified before being provisioned within researcher workspaces.
- Clinical trial cohort identification: The Cohort Browser could be used to return cohort counts that could be eligible for a clinical trial. The SDE team cannot identify individuals; they will return the same query to the NHS provider for them to re-run and identify the individual patients for further eligibility screening.
Slides and further information
Slides from the talk are available as follows:
- Liz Ford: Kent Medway and Sussex Secure Data Environment
- Magali Ruffier: Introduction to the EoE SDE and SDE network
The webpages for the two SDEs are as follows:
- Kent, Medway and Sussex: www.sussex.ics.nhs.uk/our-work/our-priorities/digital/kent-medway-and-sussex-secure-data-environment-for-research/
- East of England: www.eoe-securedataenvironment.nhs.uk
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Rebecca Allen (Head of Public Health Analytics, Suffolk County Council) outlined the impact that the Covid pandemic had on the work and expectations of SODA, and how it affected the sharing and use of data across Suffolk.
At the start of the pandemic SODA had faced many challenges. There was no local data for Suffolk (which was home to 761,000 people), no effective data sharing in place with Public Health England (PHE) on infectious disease, no clarity from PHE on what our role was, and no experience of the data needed to handle a global pandemic (although they had the technical skills and knowledge). However they did have some innovative local data-sharing arrangements in place, but not systematically across the whole system and not with key partners.
From May 2020 onwards, they started getting access to detailed local data. Individuals had different ‘unique’ identifiers in different datasets, which required complex linking and matching across huge volumes of data, and there was an evolving demand for the data, which led to the development of the ‘CoronaWatch’ system.
Alongside this, SODA was tasked by the Collaborative Communities Board (CCB) to identify individuals and households in Suffolk who may be particularly vulnerable to the impact of the coronavirus either clinically, financially, or socially. This led to the creation of the Vulnerable Persons Dataset.
Over 40 datasets were encrypted before being sent to SODA and uploaded to a secure data warehouse. Suffolk County Council data, UK government data including the Shielding list, and food parcel delivery information were also uploaded.
They linked data on 145,000 individuals in 109,000 households and analysed the depth and width of vulnerability in the population. This was then given to their ‘Home But Not Alone’ Collaboration which used it to make proactive contact with people and families. Over 24k outbound calls were made to vulnerable people, and a specific funding stream to support them.
The experience of the pandemic on data collection and analysis in Suffolk has led to a number of outcomes.
- It clearly identified individuals with both wide and deep vulnerability allowing immediate proactive contact and support
- It helped the whole Suffolk ‘system’ to understand vulnerabilities in its population in new ways, which is now directly influencing resource allocation
- It will help them to mitigate the long term effects of the pandemic, including inequalities
- It made them think much harder about data ethics and put a framework and process in place to support them
RA finished by highlighting some of the common responses to the challenges of data sharing, and possible ways of overcoming these..
Slides from the talk are available here.