In December 2022, we announced the news that the Understanding Patient Data had found a new home at the NHS Confederation. Since then, we have been working hard behind the scenes to transfer the hosting arrangements and recruit the new team.
Today we are thrilled to announce the launch of an exciting new phase of Understanding Patient Data (UPD). Read below to meet the team and learn more about our plans for the future.
For regular updates on UPD’s work and to get involved you can join our mailing list here, email us at hello@understandingpatientdata.org.uk, follow us on Twitter or subscribe to our YouTube channel.
Meet the team
The NHS Confederation, UPD’s new host, is the membership organisation that brings together, speaks for and supports healthcare organisations in England, Wales and Northern Ireland, with links to NHS Scotland too. It is ideally positioned to continue UPD in line with the programme’s existing aims and values. Wellcome, NIHR and MRC will all be contributing funding to the new phase of UPD at NHS Confederation. And we’re pleased to have NHS England on board too.
Following our recruitment process we’re pleased to introduce you to the UPD team. Together Nicola Hamilton, Emma Lagerstedt and Emma Morgan will drive forward UPD’s agenda with the support of our advisory board and the health community.
Nicola Hamilton is the Head of Understanding Patient Data, responsible for setting the direction of UPD with the support and sign-off from the UPD Steering Group. She joins us from her role as Head of Delivery within the Data Operations directorate of the UK Health Security Agency.
Emma Lagerstedt is Policy and Engagement Manager for Understanding Patient Data. She brings her experience of working in health policy and government affairs in the pharmaceutical industry specialising in policy and patient advocacy, as well as with health public affairs agencies delivering policy analysis and strategic engagement programmes for health and social care clients.
Emma Morgan is Policy and Engagement Manager for Understanding Patient Data. Her background is in both clinical psychology and health data analytics, with experience across public, private and third sector health and social care organisations.
“It is a privilege to lead Understanding Patient Data into its latest phase and I look forward to working closely with the community to bring transparency, accountability and public involvement to the way patient data is used. Our approach will be to build on UPD’s impressive work with new research, resources and representation to make the way patient is used more trustworthy.” – Nicola Hamilton, Head of Understanding Patient Data.
UPD will continue to have independent oversight from its advisory group, which sets the strategic direction. We’re pleased to welcome back returning members as well as some new faces. Together, the steering group members represent the health data systems in four UK nations and provide vital skills and subject matter expertise. For more information, please refer to the ‘About Us’ page of the UPD website.
UPD will be connected to NHS Confederation’s strategic policy department, supported by its Deputy Director of Policy, Ilse Bosch.
A new phase of UPD
UPD’s success lies in its focus on supporting the health community, and in the support that it receives in return. The team will be actively seeking stakeholders’ input in the development of each UPD project to ensure that we provide the community with the research, resources and representation they need to make the way patient data is used more trustworthy.
The new phase of UPD will have three thematic workstreams:
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health data policy
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data transformation
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population health management and use.
Specific projects are envisaged on topical developments including health data policies, GPDPR, secure data environments for research and development, integrated care system (ICS) transformation, ethnicity data and population health.
What can you expect in the first year of UPD?
Health data policy
UPD intends to build on its existing work by commissioning new research on the best words to use to talk about topical health data developments. The intention is to organise creative workshops with a range of language experts to test words and imagery with the public, patients and healthcare professionals, using quickfire focus groups. The findings will inform updates to the UPD glossary and resources to support patient groups, charities, NHS organisations and policymakers to talk about health data.
As part of its data policy arm, UPD envisages creating explainers on the wide range of policies, strategies and guidance to distil the implications for patient data and the way it is used. This builds on UPD’s existing explainers on how health data is used.
UPD will continue to engage and feed into UK-wide health data developments and public patient engagement and involvement activities including the planned GPDPR roll-out campaign and ongoing debates about opt-out mechanisms.
The programme will also reprise its role as health sector convenor to coordinate activities and facilitate the communities’ efforts to bring transparency, accountability and public involvement to the way patient data is used.
Data transformation
UPD will build on previous research and the new ‘best words to use’ project to create specific resources to support organisations, charities, and healthcare leaders professionals to discuss secure data environments for research and development with the public in a transparent and understandable way.
Previous UPD research showed that patients believe that their health data is routinely shared between NHS trusts and are surprised to learn that this is not currently the case. UPD plans to hold public conversations to discuss current data sharing practices within and between ICSs and their partners. The aim is to understand citizens’ views and expectations of the use of their data by ICSs to support patient-led input to ICS data transformation and implementation.
Population health management and use
UPD intends to expand its recent work on health disparities and co-producing accessible health information by engaging with specific ethnic groups to explore their concerns. The aim is to co-create tailored resources about how their data would be collected and used. The aspiration would be to translate these resources into individuals’ maternal languages for maximum reach, impact and utility.
At the same time, this research will help inform UPD input to the ongoing development of new standards for ethnicity data as well as work to highlight inherent biases in data sets and how to factor these into policymaking.
On population health, UPD plans to work with the public to understand their experiences and to develop an evidence base from which to drive improvements and consistency in patient data maturity for population health.
How to get involved
UPD is powered by its community, and we want to hear from you! Please introduce yourself and/ or share your related work by emailing us at hello@understandingpatientdata.org.uk
You can also follow Understanding Patient Data’s work by joining our mailing list here, following us on Twitter or subscribing to our YouTube channel.