Helen: Ultimately, creating the right culture is about more than setting standards.  

Here we present the first in a series of four public contributor-written blogs, ‘The heart of creating change in research – perspectives of the public’. Helen Grice, a member of our Public Advisory Group who supports our CVD-COVID-UK Approvals and Oversight Board and Smartphones and Wearables, talks about the importance of creating a healthy culture for patient and public involvement and engagement (PPIE) in health data research.

Valuing public contributors as part of a team

Creating the right culture for public involvement in an organisation goes beyond frameworks, procedures, and standards. While these elements are important in setting the right tone, the intangible aspects of attitudes, mutual respect, and teamwork are arguably even more crucial. It’s not just about ticking boxes; it’s about truly valuing all contributors as part of the team and actively putting these values into practice. An organisation that genuinely embraces public involvement must believe that co-production makes a positive difference in project outcomes.

The BHF Data Science Centre’s PPIE model embodies this culture. When I joined the team, three years ago after significant post-COVID illness, I had never considered myself a patient and had been away from the workplace for a while. Initially I felt a real sense of imposter syndrome working with accomplished professionals and seasoned contributors as part of the Smartphone and Wearables Initiative. I often questioned the value of my own contributions.

To contribute effectively, the public do need support in gaining the right knowledge and skills, especially in the complex world of health data. However, it’s equally important to foster an environment of respect and good relationships, tailoring approaches that encourage public and patient contributions of all shapes and sizes.

At the Centre we work on specific project areas matched to our experience, skills and also meet quarterly as an organisation-wide public advisory group. Our meetings are made as inclusive as possible. We receive relevant materials in advance, often with specific questions that enable us to focus and reflect on what is required beforehand.

The whole team, from senior leadership down, welcome and actively encourage diverse contributions and public empowerment. As a result, our discussions are rich, robust and grounded in real-world patient experience. We’ve now even had to extend the time for them! – Helen Grice

Supportive environment

This supportive environment has helped me see the importance of my own contributions and grow in confidence in my role and beyond. This highlights the crucial role that a positive culture plays in an organisation’s success to really understand patient perspective. Such understanding makes health data research more relevant, enhances public trust in the research process and findings and improves health outcomes for all communities.

Ultimately, creating the right culture is about more than setting standards. It’s about building an environment where everyone feels valued, respected, and empowered to contribute. When organisations truly value and include diverse perspectives teams are stronger, more innovative and more able to achieve outcomes that truly reflect patient needs.

What’s next?

Developing a healthy culture for PPIE is a continuous journey, and we’re committed to working in partnership with the public and the research community to enhance our approach. Our new PPIE strategy for 24/25 includes a key objective which will focus entirely on developing a strong culture for PPIE. We’re working with Public Engagement in Data Research Initiative (PEDRI’s) to adopt good standards across our work and these standards have been considered within our strategy.

Find out more

Read our recent article and case study to find out more about our approach to PPIE.