What is patient and public involvement (PPI)?
People living with heart and circulatory diseases are the driving force behind everything we do. Our thriving PPI programme gives them a say across all areas of our work.
Members of Heart Voices, our PPI network, have had an overwhelmingly positive impact on the work and decision-making of BHF. Although the impact has been huge, there's still more we can do.
We want to develop innovative ways of meeting the needs of people with heart conditions by listening carefully, working together and thinking big. By joining Heart Voices, you can help us achieve this aim.
Read on to learn more about what we've achieved together so far.
Helping to shape our research programme
As the largest funder of cardiovascular research in the UK, it’s so important that the voices of people affected by heart and circulatory conditions are included in all areas of our research programme.
This includes opportunities for patients and the public to be involved in shaping our research strategy, as well helping to inform our research funding decisions.
Here are some of the ways that members of our Heart Voices network have shaped our research programme:
- Patient Advisory group (PAG): fifteen members use their lived experience to help review and provide feedback on various research grant applications we receive. This helps to make sure we invest in research that will make the biggest difference to people affected by heart and circulatory conditions.
- Research Strategy Advisory Group (RSAG): nine patient representatives sit within this group alongside researchers, funding committee members and BHF’s Trustees. They share their views to help inform the BHF's research strategy. This helps to make sure our research is relevant to people affected by heart and circulatory conditions.
Helping us produce health information resources
We know how important it is for people living with a heart condition, as well as their families and friends, to have simple, clear information at the right time.
This is why we're committed to co-creating accurate, trusted information with those who have lived experience. By doing so, we can keep meeting the needs of people affected by or at risk of cardiovascular diseases.
Here are two of the many ways Heart Voices members have helped shape our content:
- Video animations about heart conditions: members with heart failure with preserved ejection fraction (HFpEF) worked with us to develop and review two new video animations about the condition.
- Our television advertising campaigns: Heart Voices members shared their thoughts and suggestions about our Christmas TV advert, helping us create an ad that reflects real experiences.
Shaping our policy and public affairs work
A key part of BHF’s work is to help inform and influence government policy and decision-making related to heart and circulatory diseases and research.
We want to be sure that the views and perspectives of those personally affected are part of these discussions. This is done through our Lived Experience Advisory Forum (LEAF).
LEAF members meet regularly with our policy and public affairs team and use their lived experience of heart and circulatory conditions to highlight areas of opportunity and unmet need. They also provide an insight into how political and healthcare decisions impact patients and the public.
Why we value your involvement
Patient and public involvement is essential to the work of BHF. The involvement of people with lived experience ensures everything we do is centred around what people need and want.
Amanda
Head of Patient and Public Involvement
When people share their personal insights and feedback on new ideas, it can make a huge difference to the quality of our health content. Our information will be relevant, easy to understand and accessible. It’s a vital part of our production process.
Amy
Senior Patient Information Lead
In the policy and public affairs team, the voices of people living with heart and circulatory conditions are at the heart of everything we do.
Lucy
Public Affairs Officer