Introducing our new patient and public involvement and engagement (PPIE) strategy created with the public 

Due to the ever-evolving practice of patient and public involvement and engagement (PPIE), the PPIE team at the British Heart Foundation Data Science Centre (BHF DSC) have reviewed and updated their strategy in collaboration with the public. Here we provide seven steps for successfully involving the public in the development of a strategy, explain how the public voice has helped shape our plans and present our new easy-read strategy for 24/25.

Group Discussion

We first brought our strategy for review to our public contributors in May 2024, to assess whether our objectives accurately reflected our current aims, considering any advances within the cardiovascular and PPIE field.

Inspired by Dr Edward de Bono’s Six Thinking Hats we facilitated group discussions to look at each objective and discuss what is working well, which areas should we look to strengthen and what might be missing from the strategy.

To ensure an inclusive approach that captured all the voices of our public advisory group, we also created and shared a survey with those not able to participate in the group discussions.

Thank you for sharing and asking us to continue to contribute: this is great evidence that you do care about engagement. – Mustapha Koriba 

Prioritisation

We gathered rich insights from these conversations and compiled the feedback into themes. Then, in collaboration with the wider team at BHF DSC, we prioritised the main areas to focus on considering our capacity and resource and updated the strategy accordingly. Although we were unable to incorporate all feedback into our strategy, we will be keeping in mind all ideas shared for potential future deliverables.

Review

Our public contributors then reviewed the updated strategy once again, ensuring our objectives and deliverables were clear and concise. We also met with our Writing Club to look at ways to improve the document visually and ensure it uses accessible language.

After pulling together final thoughts and comments from our public members we completed the strategy document and commissioned an easy read version, an idea from one of our contributors to improve accessibility.

 PPIE Strategy – great feedback, great demonstration that our voice, input and our thoughts were valuable! – Mike Molete 

Including the public voice

We wanted to ensure that public contributor feedback helped shape our objectives. An overview of our strategy for 23/24 and previous objectives can be found here for further information.

Key areas of feedback from our public contributors included:

• That the current structure for PPIE at BHF DSC works well to support public contribution across the Centre and we should continue to deliver this model of PPIE.
• That although our current objective for involving and engaging diverse audiences is good, we need to take a more active stance on Equality, Diversity and Inclusion. Clearly stating who we want to engage and how we plan to engage them, utilising partnership working to support this.
• For us to seek new opportunities and new audiences through partnership working and existing networks with established connections within different communities.
• The need to develop a stronger culture around PPIE, bringing together researchers, health data scientists and public contributors to have a shared understanding of PPIE and power of decision making.
• For us to improve our impact tracking, to show how public input has made a difference to projects and wider impacts over time and improving transparency by clearly communicating when changes have been made in response to public input and when they haven’t and why.
• The importance of engaging wider audiences, for example researchers and data professionals who may not know how PPIE is implemented within health data science and public members who may be unaware of how health data research can improve patient care or the opportunities available to them to get involved.

A visual below shares an overview of where public feedback fed into the final objectives.

Our Strategy

Our Vision

We simplified our vision in response to public contributor feedback that we were losing our overall message due to it being too long. Reducing the vision clarified our focus that health data is often used without individual consent and the inclusion of the public in our work is not only ethically important but also strengthens research and the Centre’s outputs.

Our Audience

We also received feedback that we talked about our audience and used terms such as public contributors it wasn’t always clear who we meant. Therefore, we carried out an audience mapping exercise with our Writing Club to get a clearer picture of who it is we want to engage and developed a new section within the strategy to highlight this.

Objective 1: Ensuring collaborative patient and public involvement is embedded at all levels of the BHF Data Science Centre.​

To ensure the continual successful delivery of our PPIE model, we used objective 1 to emphasise our approach to integrating the public voice across all areas of our work. Including governance, planning and priority setting, funding calls, communication, and evaluation. 

Objective 2: Involving and engaging with a diverse group of people, including less represented groups.​ 

Wanting to take a more active role in supporting Equality, Diversity, and Inclusion (EDI), we are spending time refining our EDI plans as a separate piece of work and have made this a key deliverable of objective 2. As well as focusing on fostering partnerships to enhance accessibility and representation.

Objective 3: Utilising existing networks and working in partnership with organisations to improve our learning, strengthen our approach and reduce duplication within the field.

We shifted the focus of objective 3 to partnership, working in response to public contributors’ feedback to strengthen existing partnerships and seek new collaborations with established networks.

Objective 4: Developing a strong culture around PPIE so that all BHF DSC stakeholders are confident in involvement and engagement approaches and our public contributors feel supported and empowered to contribute effectively. 

We also adjusted objective 4 to reflect the need to promote and support an overall culture around PPIE within health data research. Where researchers, data professionals and the public can work together collaboratively towards a common goal.

Objective 5: Monitoring and evaluating our PPIE activity, highlighting impact and changes as a result of public input with our public contributors and wider audiences.

To ensure we improved impact tracking at the Centre to better communicate changes made as a result of public input, we focused objective 5 on monitoring and evaluation. Seeking to review impact annually, celebrate best practice and continually evaluate and improve our approach.

Objective 6: Working with our Communications Manager to ensure PPIE is transparent and embedded into all relevant external communications.​ 

To help reach wider audiences currently unaware of how health data is used within research to improve healthcare services and patient experience, we emphasised the importance of wider outreach within objective 6. Focusing on human interest stories which public contributors had fed back were of most interest.

What’s next

By working collaboratively with our public contributors, we have enriched our strategy, tailored to the needs of those directly impacted by heart disease and other linked conditions. This co-production process has reinforced the importance of transparency and continual feedback; by involving the public at every step we are able to deliver more meaningful and impactful work.

Moving forward, we will focus on the deliverables of each objective. And we will implement an evaluation framework to continuously monitor our progress and ensure we are meeting our aims.

I’d like to commend you on all the brilliant work you’ve done. This is a very meaningful strategy and it excites me to be part of the PPIE work! – Margaret Rogers