Date: 03 May 2019
This month the NIHR will be talking about a new patient engagement service for the life sciences industry which has been in development for almost a year.
The primary aim of the service is to bring patients and life science companies together earlier in the clinical development process, before a study protocol is finalised, so that patients can help companies to make commercial clinical trial designs as patient-friendly as they can be.
Throughout 2018 and early 2019 a team from the NIHR Clinical Research Network collaborated with patients and a global pharmaceutical company, Pfizer Ltd, to design and pilot this new service. The work is ongoing and the service is now being tested by a number of early adopter life science companies.
Dr William van’t Hoff, Clinical Director for NHS Engagement for the NIHR Clinical Research Network, is a member of the project team. He is an active paediatric researcher and has a long standing interest in involving young people in shaping clinical research. He says:
“When researchers are designing clinical trials it’s important that the ‘ask’ of the research is balanced with the burden of the disease, otherwise patients are less likely to participate. For example, for a life-limiting disease like cancer you might expect a trial to be quite intensive in terms of treatment sessions, hospital visits and tests. But such an intense protocol would be less acceptable for a long term condition like asthma, which many people manage with medicine at home on a daily basis.
This service recognises the expertise patients have in their own condition and gives them an opportunity to express their views about what is a reasonable ‘ask’ of a research study or trial. It will also give life science companies an opportunity to listen and shape their clinical research in a way that will pay dividends in the long term hopefully with less amendments required and improved recruitment and retention.”
Keith Wilson, Patient Research Ambassador at Liverpool Heart & Chest Hospital NHS Foundation Trust, has also been involved in developing the new service. He says:
“My view is that the research should be designed to fit the patient, not the other way around. I firmly believe that involving patients from the very beginning, at the protocol development stage, increases the chance of getting it right first time. We now have a genuine opportunity here to further improve research recruitment and retention in England.”
The service, once fully rolled out, will be a ‘cost recovery’ extension of the NIHR Study Support Service (which provides a range of support to companies for free).
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