Public contributors at the BHF Data Science Centre co-developed a case study to articulate the Centre’s innovative model for patient and public involvement and engagement (PPIE) and the impact this has on health data research.
At the BHF Data Science Centre, patients and the public are at the heart of cardiovascular research, with PPIE a cornerstone of our work.
To ensure our research is relevant to and guided by patients and the public, the Centre has designed and embedded a model for (PPIE). This integrates the public voice across all areas of our work, including governance, planning and priority setting, funding calls, communication, and evaluation, spanning all the areas in which our own staff work. This approach has wide-ranging impacts on research quality, public trust, organisational culture, and diversity.
As highlighted by our public contributors, here we talk about four key areas of impact as a result of our model and important considerations for anyone involving patients and the public with research.
Trust
Demonstrating trustworthiness in the use of patient data is vital for health data research. Placing emphasis on the importance of patient and public perspectives within research and being transparent throughout is an important consideration.
Our model for PPIE ensures that the work of the Centre is transparent and trusted by patients and the public. Our public contributors are invited to hear our plans for research, we provide them with information, and they have opportunity to ask us questions and share their perspectives. Taking this approach reassures them that their views are considered (e.g., on data security), enhances public understanding on how patient data is kept safe, and encourages future participation in research. We collaborate with our public contributors to co-develop public facing information and human-interest stories that connect with the real world so we can reach and enhance public understanding, thereby increasing the impact and visibility of PPIE in research, demonstrating trust and transparency within health data research.
Relevance
Developing research that is relevant to the needs and experiences of patients and the public enhances the quality of research and means research is designed which benefits patients and the public.
At the Centre, we collaborate with our public contributors to plan our work, and we work with them throughout the research journey, ensuring that the research remains relevant to patients and the public from the early stages of planning to the later stages of dissemination. By doing so, we are harnessing the power of the public voice throughout all the fundamental stages of our work, which in turn helps us identify what’s important to patients, improves our results and improves future outcomes for and patients living with cardiovascular disease and/or other specific diseases.
Culture
Developing an open and welcoming environment for the public to contribute their perspectives and building relationships between the public and researchers creates a healthy culture for PPIE.
At the Centre, we ensure our public contributors are able to contribute at the appropriate points throughout the research journey. We invite researchers and health data scientists to present their research plans and findings to our Public Advisory Group and encourage collaborative working relationships, which has a positive impact on the public and health data professionals involved. We champion PPIE and encourage diversity of opinion wherever possible, and lead by example in setting expectations of and providing a framework for mutually beneficial and respectful relationships. In doing so, we have created a culture where our public advisory group are empowered and valued. This fosters an environment where relationships are enriched from the very beginning, and they feel confident to share their differing ideas freely and respectfully.
Diversity
Placing importance on diversity when developing research is a fundamental consideration from a PPIE perspective and should be a core part of research, from the initial stages of planning on how to involve the public, to communicating findings to the wider public.
At the Centre, we have recruited and embedded a diverse group of public contributors who work in small groups and individually across our areas of work. We increase accessibility and inclusivity by providing information, training, and support, enabling fairer opportunities for a diverse range of patients and the public to contribute to work at the Centre and across HDR UK. Our PPIE group has helped us consider diverse audiences across the UK, both in the co-development of communications and dissemination plans and materials.
What’s next
We’re committed to continuously improving, and we regularly review our approach in line with our PPIE strategy to ensure we’re adopting good practice and growing with an ever-evolving health data research landscape. We’ve been working in partnership with Public Engagement in Data Research Initiative (PEDRI) to embed good standards within our new strategy for 24/25, and we’re excited to see how these standards can help strengthen our PPIE approach in the future.
Case study
Our public contributors have co-developed a case study and have identified what they believe are the most crucial areas of change as a result of PPIE being applied across the Centre and wider research.
The heart of creating change in research: Perspectives from the public
Stay tuned for a series of blogs which highlight the personal perspective of four public contributors who share their own opinions on the importance of Culture, Trust, Relevance, and Diversity, and how this can change the landscape for health data research.
The blogs will be shared on our website weekly throughout November/December 2024.