Patients and public
Outputs and impact
We work with patients and the public to co-produce quality research, build mechanisms which support transparency and trust and meaningfully involve a diverse group of people, including less represented groups affected by heart and circulatory conditions. Find out how involving patients and the public contributes to our project/Centre outputs and the impact this has as a result.
Our latest outputs and impact
Case Studies
Our meetings
The Public Advisory Group provides guidance and support to the BHF Data Science Centre to ensure public and patient involvement and engagement (PPIE) is embedded in all our work, where appropriate.
As a group we meet quarterly to share ideas, discuss challenges and provide guidance and support to the Centre.
You can read more about previous public advisory group meetings here.
PPIE across our Areas of Work
Smartphone and Wearables
- In 2024, public contributors co-designed communication outputs to share the findings of scientific report with members of the public. One public contributor shared their real-life patient story to highlight the findings. Read more HERE.
- In 2023, public contributors co-produced a public survey to help us understand what data members of the public would be willing to share through a smartphone and/or wearable.
- In 2022, we hosted a public webinar to engage the public in questions around the logistics and ethics of using wearables to help detect heart conditions. A report of the webinar, including responses to the interactive Q&A session, reflections, and an overview of the work in this area can be read here
Imaging
- Public contributors co-produced a public survey to gather priorities for cardiovascular research.
- Public contributors co-presented a patient voice and cardiovascular research priorities webinar in February 2023
Diabetes Data Science Catalyst
- In 2024, public contributors co-developed a patient and public engagement event. We heard from patients living with type 1 and type 2 diabetes. They shared their input helping us shape our research plans.
- In 2023, public contributors joined a call for funding panel and provided expertise. They scored applications and reviewed awardee progress reports to ensure the patient and public voice was represented. Read our case study here.
CVD-COVID-UK/IMPACT Consortium
- Public contributors provide advise and contribute to various projects to ensure PPIE is integral to the CVD-COVID-UK/COVID-IMPACT work.
- They have contributed to the development of a ‘ways of working’ document to help guide researchers ensuring they consider PPIE.
- Provided guidance on more than 68 CVD COVID-UK/COVID-IMPACT research projects, and counting.
Stroke Data Science Catalyst
- Public contributors joined a call for funding panel and provided expertise when reviewing applications ensuring the patient and public perspective was considered.
Cohorts
- Public contributors helped develop frequently asked questions designed for the public which will feature on a Trusted Research Environment (TRE) platform.
Kidney Data Science Catalyst
- Public contributors contributed to a survey for the public and researchers to gather priorities for cardiovascular and kidney disease research.
Writing Club/Communications
- A public contributor wrote an opinion piece ‘I want to have an open and honest conversation about the strengths and limitations about data, and you can too.’ Read more here.
- Contributed to an opinion piece in the British Medical Council Journal
- Public contributors provided input and attended a user experience workshop during the launch of our brand new website in 2023.
- Attended a workshop to develop new names for our areas of work, helping us ensure these names are understandable for the public.
- Contributed and developed a public facing jargon buster.
- Contributed to our PPIE strategy for 24/25 providing input on how to improve the document visually and ensure it uses accessible language.
Other involvement
- Co-presented at an NIHR webinar discussing PPIE within intense data research.