Improving how we all work with the public

In the HDR UK Inflammation and Immunity Driver Programme, we noticed that people from some areas, especially those who don’t always get the same chances for good health, are not as involved in our research. 

We want to change that.  

We will work with public members to make a plan that supports Equity, Diversity, and Inclusion (EDI). This means everyone can have an equal chance to be included, learn, and share their ideas in our research. 

There are five steps in our project: 

1. Finding out what our team members need to make their work more inclusive. 
2. Bringing together 10-15 public members from across the UK to create an EDI Panel.  These public members will be from a range of backgrounds (ethnic background, where they live, etc.)  
3. Hosting online workshops with the EDI panel.  We will talk together about what is “EDI”, what it means to different people and how we can improve it within our research. 
4. Co-creating an EDI Framework with the EDI Panel.  This will have roles and goals to achieve. 
5. Co-designing and delivering EDI training with the EDI Panel.  Sharing what we learn with our team members in the Driver Programme  

One in ten babies in the UK is born preterm, and these children are at greater risk of long-term health and educational challenges. The NeoWONDER dataset links neonatal, hospital, and education records for babies born very preterm, creating a powerful resource for understanding long term outcomes. However, young people whose data are included have not yet been directly involved in shaping what this research should focus on. 

This project, led by Imperial College London with young people as co-researchers, will pilot an inclusive approach for involving young adults born preterm in setting research priorities for NeoWONDER. Working with partners including the Caribbean and African Health Network (CAHN) and the Adult Preemie Advocacy Network (APAN), the team will co-design accessible materials explaining how linked data works, and run creative workshops to identify outcomes that matter most to young people. 

The project will produce youth-prioritised research questions, a visual “explainer pack” about data linkage, and a practical toolkit showing how to embed PEDRI Good Practice Standards in youth-led data research. The results will strengthen inclusive public involvement in data science at Imperial and across the UK. 

Kent, Medway and Sussex (KMS) has an established track record in working with people and communities for data research, recognised nationally for its role in fostering public trust within the Secure Data Environment (SDE). Both Sussex and Kent & Medway Integrated Care Boards have recently co-designed pioneering health data social license ethical principles with extensive public participation, including diverse communities and people with lived experience. This collaborative groundwork positions KMS as a national exemplar.

The region’s unique demographics – including one of the UK’s most diverse and rapidly growing populations with significant health inequalities – make KMS an ideal setting to test and refine inclusive, public trust-building approaches to data governance. Strong partnerships across NHS, academia, Voluntary, Community Sector and Social Enterprise (VCSE) organisations, and grassroots communities reinforce this strength, ensuring aligned activities and meaningful representation.

In a collaborative partnership between the KMS Secure Data Environment, NHS South, Central and West Commissioning Support Unit, Health Innovation Kent Surrey Sussex, NHS Sussex, NHS Kent and Medway, Kent and Medway Research Engagement Network, Social Enterprise Kent, Sussex Research Engagement Network, the University of Sussex and Public Partners, the project aims to:

• Evaluate the effectiveness of the public voice in decisions on data access within the KMS Secure Data Environment.
• Deepen engagement with under-represented and diverse groups through trusted VCSE partners.

The project success criteria will based on:

• Enabling scale and spread of model blueprint on approach that could be used across the country.
• Outcomes that are sustainably embedded in metrics for the KMS Social Licence principles.

A range of methods will be used throughout the delivery of the project such as deliberative engagement techniques, surveys and interviews. The project will be overseen by an Expert Advisory Group which will include Public Partners. Key principles that will underpin delivery include:

• Expert Advisory Group to oversee the design and deliver the public involvement activities. The Group will be chaired by one of a Public Partners.
• Adherence to the Five Safes Framework for responsible data access.
• Training, support, reward, and recognition offered to public partners and staff.
• Sharing best practice and learning via PEDRI Community of Practice.
• Equity Impact Assessment to inform project design and delivery.

Over the project, the activities and deliverables include:

• Co-design an evaluation framework with public partners, PIE practitioners, academics, and public sector professionals aligned to the PEDRI Standards.
• Baseline survey of KMS residents on involvement in data-use decisions.
• Insight review of existing community views on data access.
• Two deliberative engagement exercises using real Data Access Committee (DAC) decisions through a social licence lens.
• Recruit diverse public partners with Expert Advisory Group and VCSE support.
• VCSE-led interviews with DAC public members using co-designed questions.
• Survey of public partners, DAC members, and staff to gather broader insights.
• Create system-wide process for reporting, embedding, and learning from insights.
• Produce and present a blueprint of the overall approach to the SDE National Network.

For further information about the project, please contact Isabel Clark, Strategic Community Partnerships and Insight Lead at Health Innovation Kent, Surrey, Sussex – Isabel.clark3@nhs.net

Reproductive Justice (the rights to bodily autonomy; to have a child; to not have a child; and to parent in safe and healthy environments) is an appropriate and powerful but underutilised lens for understanding and addressing violence against women and girls. Experiential knowledge is key to understanding how violence shapes the constraining environment within which people make reproductive ’choices’.

We will conduct a narrative review in partnership with women from marginalised communities to explore how violence restricts reproductive justice in England, incorporating storytelling approaches to centre lived perspectives. Through conducting this work, we will identify priorities for research and action.

Personal data is information which relates to living identifiable individuals and must be treated and managed securely. It may be used for research purposes if security, anonymity and people’s rights are not compromised and the benefit to the public can be demonstrated.

Trusted Research Environments (TREs) allow sensitive personal data from different sources to be:

• combined;
• de-personalised;
• made available for approved researchers to analyse within a secure virtual environment.

Enabling researchers to access a broader range of data more easily while ensuring data security brings great public benefits. New research can be carried out more quickly, informing policy and scientific advances to improve lives.

TREvolution is a research programme overcoming barriers to data access and analysis within TREs.

Not all sectors of society have had their voices heard equally in the development of TREs. TREvolution is engaging with people from underserved communities to ensure that their insights shape and inform TREvolution’s work.

TREvolution’s work includes on-going involvement of a Public Advisory Group (PAG) and 2 co-Public Leads, in-person engagement with underserved communities and a wider engagement programme to gather insights from diverse perspectives.

The project will:

• Maximise impact of underserved communities’ insights on TRE development;
• Build PAG capacity through opportunities to direct TREvolution’s work;
• Test and evaluate ‘peer analysis’ model.

TREvolution’s work with underserved communities involves sessions through The King’s Trust with young people not in education, employment or training. Additionally, sessions with diverse communities of people living with socioeconomic disadvantage. To ensure that their views are fed effectively into TREvolution’s work, PAG members will use a ‘peer analysis’ approach, working directly with source material from in-person sessions to ensure that feedback from underserved communities is authentically heard. Public contributors will decide how feedback from underserved communities will inform wider engagement, which will take place during 2026.

This project aims to make sure that mental health research using electronic health records is guided by the people whose data is being used. The data comes from anonymised NHS clinical records and is accessed through a secure research platform called Clinical Record Interactive Search (CRIS). This platform helps researchers learn more about mental health care and improve services, however, it’s essential that the public help shape how this research happens. 

Recently, Camden and Islington NHS Trust and Barnet, Enfield and Haringey NHS Trust have merged, meaning the CRIS system will soon include data from a much larger and more diverse group of patients. To match this change, our team led by Dr Nathalie Rich, Dr Justin Yang and Dr Joseph Hayes at UCL, want to expand and strengthen public involvement in the research process. 

The aim of our project is to: 

• Recruit more public contributors, especially from communities not previously represented 

• Provide training, so contributors feel confident reviewing research and understanding data use 

• Support new members through a paid facilitator and clear guidance materials 

• Make involvement accessible by offering online and in-person options, childcare and travel reimbursement, and payment for time 

Public contributors will help decide whether proposed research is appropriate and useful, ensuring lived experience shapes decisions. They will also help design resources and training that will continue to be used after the project ends. 

By the end of the project, the group aims to grow from two to ten active public members and to embed long-term, equitable involvement in the governance of CRIS. 

The NHS collects mental health data that can be valuable for research but people often worry about how this data is used, especially if commercial organisations (not just clinicians or researchers) want to use it. It is particularly important to engage the public on this topic because patients do not have to give explicit consent for their routinely collected mental health data to be used for research. There is currently substantial public sensitivity and wariness around commercial use of routinely collected health data and data about mental health is considered particularly sensitive and potentially stigmatising.  

Patients have a right to know and make decisions about how their routinely collected health data is used for research. And everyone who works with this data must understand and operate according to the laws and the public’s expectations in order to maintain trust in research with mental health data and its outcomes.  

DATAMIND is a Medical Research Council-funded project aiming to transform mental health research by ensuring that data is finable, accessible, interoperable and reusable (FAIR). We work with patients and the public, healthcare professionals, industry experts, researchers and academics, policy makers, educators, charities and the NHS. 

With the DATAMIND Lived Experience Advisory Group (LEAG), we have already developed a set of guidelines providing advice to industry and the NHS about what is acceptable and desirable in terms of sharing mental health data with commercial organisations from a patient/public perspective. The LEAG were extensively involved in shaping the guidelines and we ensured multiple different views, including more cautious approaches to working with industry, were incorporated in the final document.  

We are currently in the process of submitting these ‘Industry guidelines’ for publication in an academic journal and with funding from PEDRI, we will make them more transparent, accessible and useful for a wider audience, including members of the public who aren’t already familiar with health data research.  

To do this, we will work with a writer who specialises in putting things into plain language, a video producer and our established LEAG to develop a short, public-friendly and engaging video and visually appealing leaflet of the guidelines that is easy to access and understand. We will incorporate diverse perspectives in the final products. 

This will enable patients and the public to: 

• understand how their mental health data could be used for research 
• make decisions about how their data can be used for research 
• advocate for the safe and fair use of mental health data for research. 

The LEAG will also help develop and implement plans to disseminate this new, public-friendly version of the guidelines.  

This is a clear example of how PEDRI’s standards can be used to shape a project that is co-developed by people with lived experience and enable it to have greater national and international impact.  

The Universal Care Plan (UCP) is a London based digital care planning solution that allows people to record and share what matters most to them, including preferences, important medical details, and wishes for future treatment. This information can be accessed and edited by doctors, nurses, emergency services, and other care professionals across London, helping them provide care that respects people’s needs and choices. More than 84,000 Londoners already have a UCP (November 2025), improving communication, reducing stress for families, and helping people stay involved in decisions about their care. 

Currently, people can view their care plan via the NHS Login Service (e.g., NHS App) but need a health or social care professional to create and update it. New functionality is being developed to enable people to be able to start and edit their own care plan directly from the NHS Login Service, increasing their involvement in their care. To make this effective, we need to ensure it meets the needs of all users and is beneficial to those who may require it most. This project will focus on reaching people who do not have a UCP from underserved communities and those facing barriers to digital access.  

We will engage these communities through public event workshops with local community leaders, charities and organisations. The workshops will help us understand the needs of these groups and provide insight into how to produce clear, accessible support materials and sustain engagement over time. All activities will be guided by PEDRI Good Practice Standards, ensuring the workshops and resources are inclusive, trustworthy and effective. The tools and resources created will continue to be used after the project ends, helping ensure long-term change and fair access to the UCP for everyone in London.