Request for Engagement in PhD research:
The Value of Patient Engagement
New medicines and healthcare devices must be founded on solid science and address real needs. For this reason, researchers, physicians, and regulatory authorities have long been consulted throughout research and development (R&D) to ensure that new therapies are sufficiently proven to tackle disease in a clinically meaningful way. More recently, patients themselves are being invited to join R&D processes so that medicines tackle the disease and address the most meaningful impacts of the condition in order to improve patient’s experience and quality of life.
There are now regulatory expectations for patients’ perspectives to be integrated into approval-submissions for new medical products in some countries, and a range of guides on when/how to collect and integrate patients’ insights in decision-making. People no longer have to argue why patients should be involved in research, however, the engagement itself is still not often an integrated, wide-spread activity in R&D. There are many reasons for this, but a consistent problem is that there is very little evidence, past the anecdotal level, on the value (both quality and economic) of involving patients in medicines/medical device development processes.
There is currently no agreed approach to reliably translate partnership with patients into tangible value such as health, monetary, patient-impact, and social benefit. Starting to bridge this gap will be required if patient engagement is to become integrated into standard R&D practice across the board.
This challenge needs to be addressed by pre-competitive collaboration and structured research. Alongside regular work our Programme Lead, Chi, is proposing to undertake PhD research that focusses on this. The aim is for this to begin later in 2023 and complete 5-6 years later (depending on how many partners would like to support the research).
We are looking for partners prepared to share examples and learning toward the start of the research that can be used to build theories and models, and/or work with Chi to test these approaches later in her studies, co-publishing the results and learnings where possible.
Partners from patient groups, regulatory authorities, health technology assessment bodies, pharmaceutical and MedTech industries, payers and public health are welcome and sought.