Patient engagement is a journey

by | 14 Oct 2019

Dr Katherine Deane, BSc PhD, is a Senior Lecturer in Research in the School of Health Sciences at the University of East Anglia, UK.
She has spent 23 years as a university researcher, of which 16 years involved working in the field of patient engagement. Her interests are in the preclinical and phase 3 and 4 of drug development. 
According to Deane, her motivation for becoming a BOGP reviewer was to enhance patient engagement practice in the pharmaceutical world in particular.
In terms of the quality of submitted cases, she admits that this was variable, with some more impressive than others.
“There was a range of quality both between the cases and within the cases on specific quality items – from poor to very good. Much of it was good in a number of areas but the case studies often lacked detail for a fair appraisal in others.” She adds that there was also confusion between patient engagement per se and research participation that simply involved a lot of consultation.
Despite this, some projects stood out for her as shining examples of best practice in patient engagement.
“Projects like that which created the cervical orthoses for people with motor neurone disease were particularly impressive. What was clear was the determination to ensure the patient’s voices were heard and informed the whole design process as well which ensured the patients participating in the research were able to inform the design of this orthoses in a highly efficient and productive manner to create an innovative orthosis that really address an identified patient need,” she says,
“Patients were always at the forefront of the project’s processes rather than as an after-thought. They were brought in early and often and clearly had real power over the direction of the research project,” she says.
When it comes to advice for future applicants to the BOGP, Deane says more detail on the particular project will always be welcomed. 
“There is just no such thing as too much detail. If you developed a shared process – what were the steps, how did the initial proposal change in response to suggestions – and who made those suggestions – patients or professionals?”
Knowing the character of the patient representatives that steered the group gives insight to their representativeness and the “voices” they bring to the team ie their ethnicity, gender, sexuality, type of disease and its stage (if relevant), she adds. This will all help external appraisers understand the diversity and expertise of the patient advisers.
Consideration of continuity and sustainability is so important – and frequently overlooked, according to Deane. “How teams managed to maintain lay adviser involvement in the face of deteriorating conditions is something that requires tact, diplomacy and pragmatism – all of which would help other teams facing similar challenges,” she advises. Creativity in finding funds to maintain teams past the end of the original research project could help others find similar funds, she adds.
The BOGP is an “essential resource”, she concluded. 
“It offers a wide range of styles of projects, at differing stages of expertise, development, funds, size. They all offer ideas for implementation and reinforce the key idea that patient engagement is a journey, not a single ‘perfect’ destination. Patient engagement requires adaptation to each project’s unique context, and the BOGP gives great suggestions for anyone conducting patient engagement irrespective of their level of expertise in the area.”

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