Patients and the public have an important role in all medical research. Most of us are, or will be patients using the health care system and are members of the public.  Patient and public participation in medical research is ultimately what enables the progression of scientific discovery, much of which cannot be implemented without rigorous clinical trials.  The net result is the implementation of new drugs and medical devices that benefit much wider patient populations because the unmet needs as perceived by patients were considered during the development stages. For instance, patients and/or their carers provide invaluable feedback by completing questionnaires e.g. evaluating quality of life, which can capture more than just physical impact. Working collaboratively with patients better enables developments to patient care pathways to be made.

Obtaining and expressing the views of our MedTech Co-operative-patient and public involvement (PPI) groups in the development of new medical technology is key to establishing stronger stakeholder links and to engage patients in research. To achieve this, our PPI groups provide a key role in our dissemination strategy, where they can contribute to the information we provide to external users.

Our PPI groups have been instrumental in supporting the early stages of grant funding proposals, shaping the design stage of studies, ensuring a strong patient focus from the beginning and address the key questions to arise in an ethics review. Further to this, we advocate that researchers maintain a collaborative relationship with patient representatives throughout the lifetime of projects, providing feedback. We are working with our PPI groups to close the gap between PPI and resulting design iterations, insisting on feedback and working toward a nationwide cultural change to PPI in medical research.

Download our PPIE strategy here, which builds on a collaborative PPI strategy between the NIHR Cardiovascular MedTech Co-operative, NIHR Biomedical Research Centre, and NIHR Clinical Research Facility at Guy’s and St Thomas’ NHS Foundation Trust, which can be viewed here.  We will update our implementation plan regularly on this page.

Further information

See the NIHR website “Research Changed My Life” for some experiences shared by patients, carers and families of the benefits of taking part in research. 

NIHR INVOLVE has many useful resources addressing public involvement in health and social care research, including the INVOLVE national standard for public involvement.

Cardiovascular MedTech Co-operative Imaging Science PPI Group

The Cardiovascular MedTech Co-operative established this PPI group in 2016 in response to a general unmet need to provide PPI support for research in Medical Imaging within the School of Biomedical Engineering and Imaging Science (BMEIS) at King’s College London. We therefore extended the remit of this PPI group beyond our cardiovascular remit to research in Medical Imaging across wider disease areas.  This set a good precedent and in November 2018 it was agreed the School will focus on evolving it into a new larger group, building on our work, as we focus on developing our newly launched Paediatric Heart Disease PPI Group in partnership with Evelina Children’s Heart Organisation.

 

Learn about our new Paediatric Heart Disease PPI Group