Patient and public involvement and Engagement (PPIE) is vital in shaping research that directly impacts people’s health and wellbeing. As the PPIE Lead for HDR UK Wales, Claire Newman is at the forefront of bringing patients and the public into the heart of health data research.
In October, Claire organised the HDR UK Wales Driver Programme PPIE event, creating a collaborative platform where members of the public from the Consumer Panel based in Population Data Science at Swansea University heard directly from researchers about the work of the HDR UK Wales Driver Programmes. These programmes focus on areas where data science has the potential to advance public health, prevent illness, and enhance patient care.
The event featured presentations to the public panel on five Driver Programmes:
- Inflammation & Immunity – Professor Gwyneth Davies, Cedric Burden, and Mohammad Al Sallakh.
- Medicines in Acute & Chronic Care and Big Data for Complex Disease – Professor Rhiannon Owen.
- Transforming Data for Trials, – Kim Munnery and Fiona Lugg-Widger.
- Social and Environmental Determinants of Health – Jo Davies.
Following the event, Claire caught up with some of the presenters and members of the Consumer Panel to discuss the event and the key takeaways they took from the session.
Claire: Why do you feel public involvement is important in research?
Mohammad & Cedric: The public brings experience, knowledge, and a personal connection, which adds validity, strength, and value to our work. Engaging the public in research ensures relevance and highlights practical and ethical issues researchers may overlook. Together, researchers and the public can create better outcomes.
Gwyneth: It’s absolutely vital – since the public is why we’re doing the work in the first place. Research is about learning in order to improve the lives of people and/or the planet. We need to involve the public in our research. This is a two-way process. The public can offer valuable perspectives on what truly matters, and in turn, we hope to share useful and engaging information that provides insights into current research.
Rhiannon: It is crucial that researchers include the public throughout their research to ensure that we are undertaking research that ultimately benefits the public. It is essential to hear priority areas and lived experiences to ensure that our research is relevant, representative, and impactful. It is important to acknowledge that research is often funded by and for the public, so public involvement is essential to ensure appropriate use of funding.
Fiona and Kim: Our team focuses on developing resources for all stakeholders working to deliver clinical trials. The public voice is integral to all the resources created, ensuring all those receiving the training also think about the public. Although our programme has its own public advisory group, we recognise that there is not “one public” and the more groups and individuals involved will ensure we have a diversity of views, perspectives and life experiences to contribute to our work.
Consumer Panel members: Public involvement turns health studies from mere statistics into meaningful insights shaped by real-life experience. By contributing, we can help researchers understand how their work will affect people’s lives and ensure that it reflects a range of voices and perspectives.
Claire: What were the highlights from the event?
Mohammad & Cedric: The Panel offered helpful feedback on our methods, language, and ideas for future research. The reflections highlighted the importance of clear communication and joint planning.
Gwyneth: I was very impressed by the level of engagement from the Panel. There were insightful comments on the importance of work on air pollution. It was helpful to hear how we should avoid using terms such as ‘deprived’ to avoid stigma.
Rhiannon: The event highlighted the importance of research that addresses patient and public needs. Key takeaways included the Panel’s enthusiasm for engaging in research and their focus on aligning it with patients’ lived experiences to maximise public benefit. Collaborative discussions also led to new, co-developed research ideas, underscoring the value of meaningful patient involvement.
Fiona and Kim:The panel provided insights into the value of tailoring terminology. In the event, we discussed the use of the word ‘training’ and how this may be perceived differently by members of the public. Their contributions also highlighted the importance of considering different learning styles, which can make public-facing resources more effective.
Consumer Panel members: We were impressed by the variety of projects and the chance for us to contribute. The event was well-paced, with presentations available in advance, allowing plenty of time for questions. Having access to researchers for follow-up discussions will be particularly valuable.
Claire: What are the future steps for strengthening public engagement?
Gwyneth: It would be valuable for our driver programme to work closely with our PPI leads, including our lead lay member, to explore opportunities for public engagement. Hosting public-facing events could be a great approach, as well as actively collaborating with community projects. We should keep an eye out for these opportunities. Next year, we have a training webinar planned where one of our PhD students will share insights on successfully engaging with a community project in London.
Rhiannon: Public partners will continue to be involved in the research undertaken by HDR UK Wales. Further meetings are planned to inform the design of ongoing research, implementation and dissemination. Through discussion with the public and building on the work of the HDR UK Driver Programmes, a number of research ideas were co-developed with public partners and researchers. Researchers and the public will work together to develop these ideas to maximise the impact of our research for public benefit.
Fiona and Kim: Moving forward, we will continue working with public advisory groups and explore new opportunities, like talking again with the public panel from this event. We are grateful for all the discussions, ideas, and perspectives of all the panel members -we have truly benefitted from the event.
Consumer panel members: We suggested expanding outreach to diverse communities and focusing on non-stigmatising language. Raising awareness of data use and the ethics of AI is essential. Sustainability in data storage was another key point, as we need to be mindful of the environmental impact of increasing data usage.
Reflecting on the event, Claire said: “This event reinforced the essential role of public involvement in health data research, and HDR UK Wales remains committed to a collaborative approach that aligns research with the needs and values of the public. By working together, researchers and the public will continue building meaningful studies that resonate with and ultimately improve people’s lives.”