Patients making an impact – Dr Kate Hill, NIHR Research Design Service Adviser and Trustee of the June Hancock Mesothelioma Trust
The idea for an online resource to support patient involvement was first presented at the European Respiratory Society 2011 Congress in Amsterdam. As a relatively new member of the ELF Patient Advisory Committee, this was really the starting point of my association with ELF. Drawing both on my experience as a patient organisation representative and a senior applied health researcher, I embarked on my first major collaborative task with ELF: the development of the European Patient Ambassador Programme (EPAP).
EPAP was designed to be patient-centred but not focussed on one particular condition, moreover we aimed to create a resource that enabled people to acquire skills and gain insight into the different types of involvement open to them.
Patients bring a unique perspective to the design and conduct of research through their direct experience of the condition being studied. The same is true of patient involvement in health care – who better than the patient knows how a condition affects them and how to cope with it in the context of their day-to-day life?
Nevertheless patients cannot be expected to partner researchers and health care professionals without support. It is unrealistic to expect ordinary members of the public to become consultants in research design and collaborators in the process of the research; or shapers of health care policy without helping them to acquire the skills they need, or would like, to become actively and meaningfully involved. This is what EPAP was hoping to achieve.
For ease of use, we decided on an online, modular structure that would allow users to access EPAP wherever they choose, select the modules that interest them and complete them at their own pace. Formal training may not be everyone’s choice, but the better equipped patients are, the more interesting, rewarding and enjoyable their involvement experience can be.
In my current work role as a NIHR Research Design Service Adviser, I see how patient involvement makes applications for research funding more successful by designing research studies that are relevant and focussed on answering questions that patients believe are important. I also see the practical advantages of patient involvement, for example jargon-busting (writing study documentation in everyday language) and providing advice on how to reach out to the public either to recruit study participants or to disseminate the findings of the research.
From my other perspective, as a health charity trustee, I see the fantastic work of patient volunteers do in our Health and Wellbeing Centre who lead support groups for people with conditions like Chronic Obstructive Pulmonary Disease (COPD) and arthritis, as well as craft and other activity groups for people of all ages and backgrounds.
The concept of patient involvement in health care and research is not new but it is still not universally adopted. As researchers and health care professionals alike we need to be aware of the benefits of patient involvement, and the ways in which it can enrich the research process and health care provision by ensuring that projects and services are planned, designed and delivered with the patients’ interests and needs at the core. In my experience this is mutually beneficial because not only do patients feel that their voice is being heard but researchers and health care providers have some reassurance that what they are doing will meet the needs and expectations of the patients.