Who are we missing? Inclusive PPIE in practice

Written by Wen and Tejiri

Most researchers working in health data will tell you they want their work to reflect the populations it's meant to serve. Fewer can say with confidence that it does. On April 14, the Data Science for Health Equity (DSxHE) Data Diversity Theme and the Public Engagement in Data Research Initiative (PEDRI) co-hosted an event to explore that tension. Bringing together researchers, practitioners, and public involvement leads, the session asked a straightforward but important question: who are we missing, and what would it actually take to include them? 

Starting point: confidence and barriers

We prefaced this event with an initial participant survey focused on two important questions: 

• How confident do you feel about embedding PPIE in your research? 

• What do you consider to be the biggest barriers to embed PPIE in your work? 

The responses from this survey revealed that a majority of participants – 44%, were moderately confident while only 2% were extremely confident. 

These numbers are worth sitting with! Even among people who had chosen to spend their day thinking about inclusive PPIE, real confidence was rare. That honesty set the tone for everything that followed.

In terms of barriers, participants consistently reported that time, money, knowledge, funding and resources were the biggest obstacles that they faced in embedding PPIE in their research.

"Most researchers working in health data will tell you they want their work to reflect the populations it's meant to serve. Fewer can say with confidence that it does"

Moving from principles to practice

Presentations from PEDRI, the HDR UK Inflammation and Immunity Driver Programme, and the TREvolution team highlighted the importance of embedding EDI across all stages of data research. A key message was that public involvement needs to be reflective and inclusive of voices that are often missing from research.

PEDRI introduced its Good Practice Standards and implementation toolkit, designed to support more consistent and transparent approaches to PPIE (https://www.pedri.org.uk/about-us/our-standards/). These resources are grounded in extensive consultation and aim to ensure that public involvement is not treated as an add-on, but as a core part of research design.

Speakers also emphasised the risks of producing data and decisions that reflect only a narrow segment of the population. Early and ongoing engagement, alongside better use of citizen-generated data, were highlighted as important steps towards building trust and improving relevance.

"Public involvement should not be treated as an add-on, but as a core part of research design."

Why does inclusive PPIE remain difficult?

During breakout sessions, participants candidly discussed the structural and operational challenges inherent in embedding inclusive PPIE.

One recurring issue was reliance on existing networks, which are often not diverse. Reaching new contributors takes time, particularly when building trust with communities that have historically been excluded. However, tight timelines mean researchers often return to the same contributors.

Funding constraints were also widely discussed. Meaningful PPIE requires resources both before and during projects, yet this is not always recognised in funding structures. Without ringfenced funding, PPIE risks becoming an afterthought.

Participants also raised challenges around translating complex or technical research into accessible formats, particularly in data-intensive or basic science contexts. Other issues included low response rates to demographic questions, digital exclusion, and difficulties in demonstrating long-term impact.

Finally, there was broad agreement that institutional support matters. Without commitment from leadership, it is difficult to embed PPIE meaningfully from the outset.

What helps in practice?

The challenges were real and familiar to most in the room. But the conversation didn't stop there. 

A consistent theme was the importance of meeting communities where they are. Engaging through local groups, including faith-based or community organisations, was seen as effective in building trust and reaching underrepresented populations. Creating shared spaces where researchers and public contributors can interact more informally was also helpful.

Starting small was another key point. Inclusive PPIE does not need to begin with large-scale activities. Smaller, focused efforts can still be impactful, especially when there is clarity about purpose and openness to adapt.

Maintaining a clear sense of “why” was seen as critical in avoiding tokenism. This includes being transparent about how input will be used and being willing to revisit decisions. Participants also stressed that PPIE should be a team effort, rather than falling on one individual.

Practical supports included using digital tools to reduce administrative burden, alongside providing accessible training for public contributors. Importantly, contributors highlighted that good PPIE creates an environment where people feel comfortable asking questions and sharing perspectives.

"Inclusive PPIE does not need to begin with large-scale activities. Smaller, focused efforts can still be impactful."

Tools, frameworks, and the need for alignment

The event highlighted a growing range of tools to support PPIE. These included simple approaches such as “You Said, We Did”, as well as more structured frameworks like PIRIT, 4Pi standards, and GRIPP2 reporting guidance.

However, a key gap remains in how these tools connect. Participants noted the need for better alignment between three areas: the needs of people with lived experience, the goals of research projects, and the priorities of organisations and funders.

Recruitment was another challenge. Many teams struggle to move beyond a relatively narrow group of contributors. Addressing this requires more deliberate strategies and, in some cases, rethinking how contributors are selected.

There was also strong agreement that PPIE leadership is a specific expertise, requiring dedicated time, skills, and recognition.

Reflections from DSxHE Data Diversity Theme team

From Tejiri: 

What stood out for me from this session was that PPIE is intended to change the researcher. A good engagement with the public compels the researcher to reflect on their work and then transform that research into one that reflects the actual burden of the public, and not simply a gap from the literature. Going forward, I will apply this knowledge in public engagement to ensure that what drives my work is the actual needs of the public.

"PPIE is intended to change the researcher"

From Wen: 

What stood out to me was how often “lack of time” and “lack of resources” were discussed, but also how these constraints shape who gets included in research. In my own work using large-scale longitudinal data, I often think about who is missing from datasets, but this session made me reflect more on earlier stages of the research process. It highlighted how PPIE itself can reproduce similar gaps if we rely on existing networks or tight timelines. For me, improving data diversity is not only about better measurement, but also about more inclusive engagement from the outset.

"Improving data diversity is not only about better measurement, but also about more inclusive engagement from the outset."

What’s next

Looking ahead, several priorities emerged. These include clearer expectations from funders, dedicated funding for PPIE, and improved training and support for both researchers and public contributors. There was also a call to broaden how diversity is measured in data research, moving beyond basic characteristics to better capture the complexity of lived experience.

These insights will feed into upcoming DSxHE and PEDRI activities. The aim is to continue building practical support to help researchers embed inclusive PPIE in their work.

If you are interested in getting involved, you can contact us via info@datascienceforhealthequity.com or join us in the DSxHE Slack Workspace #theme-data-diversity.

The more people who bring their experience to this work, the better it gets. If inclusive PPIE matters to you, we'd love to hear from you. 

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About the authors

Tejiri Osowa is passionate about using her skills, knowledge, and experience to improve the lives of patients and communities. She has built a strong foundation in health data research through her academic background in Biochemistry and Health Informatics, and professional experience in health information management, data protection, and health data science.

She is committed to delivering high‑quality research and analytical work, grounded in clear communication, effective collaboration, operational rigour, attention to detail, and a patient‑centred mindset.

Her participation in the HDR UK Black Internship Programme deepened her understanding of the complexities of using health data in research and highlighted the lack of diversity within the field. This experience strengthened her commitment to improving representation both among those who analyse health data and within the datasets that shape health insights.

Motivated by this, Tejiri joined the Data Diversity Theme at DSxHE, contributing to the collective effort to bring together people working at the intersection of data science and health inequalities to ensure that emerging innovations genuinely advance health equity.

She is currently supporting this work through rigorous literature reviews that explore how EDI principles can be embedded throughout the research lifecycle. These insights are helping the Data Diversity team develop tools that strengthen equity‑focused research practices.

Her contribution to this blog reflects her ongoing dedication to improving patient and community outcomes through thoughtful, inclusive, and impactful health data research.

Wen Wang is a PhD student at the University of Essex. Her work looks at how our environments and life experiences shape ageing, combining longitudinal life course data with biological measures. By exploring how structural inequalities become biologically embedded and expressed in ageing intersectionality, her work sits at the intersection of social and biological research, with a focus on making sure research evidence better reflects the diversity of real populations. Her broader aim is to support more inclusive, evidence-based approaches to understanding and reducing health inequalities. Wen is involved in the DSxHE Data Diversity Theme. She is particularly interested in who is missing from health data, especially how gaps in data can affect health research and widen inequalities, and what that means for the policy and interventions we draw.

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About the Data Diversity Theme:

Health datasets often don’t reflect the diversity of the populations they aim to serve. This lack of representativeness can limit the generalisability of research, reduce the effectiveness of new tools, and risk widening health inequalities.

A partnership between Data Science for Health Equity and Cancer Research UK, the Data Diversity Theme brings together researchers, clinicians, funders, and patient advocates to co-create practical ways of embedding diversity across the research lifecycle. It is co-led by Dr Toral Gathani (University of Oxford) and Dr Brieuc Lehmann (UCL).