Health issues have continued to limit my inputs to the project, but things are looking up. A consensus view has swayed for and against a diagnosis of my current problem as polymyalgia and back again, but at least I am now enjoying relief from the aches and pain on low level steroid therapy.
Claire Planner, a colleague and co-ordinator of the PHIEBI project, suggested that I should write a Blog including ‘5 Top Tips on PPI for Researchers’. In a paper aimed at Clinical Psychologists* I have expressed my ideas about the ‘nuts and bolts’ of the relationship that should develop between researchers and patients/carers and public volunteers in research, but this gives me an opportunity to offer some more considered advice – although by so doing I exceed my self-imposed allocation of one A4 side.
1. Do not be surprised if PPI volunteers come up with odd questions and suggestions – that’s what they are there to do! The essential purpose of PPI is to open research to new and different views and perspectives. There can be no guarantees but sometimes these may be revelatory. It was because of a canvas of patient opinion by Arthritis Research UK that arthritis researchers were persuaded that what is important to patients was not more trials on pain relief (where most effort was focused) but research to help them cope with the fatigue associated with the condition. With individual projects it is altogether possible that volunteers will not at first fully grasp the significance of what is being attempted and may therefore express unhelpful or even irrelevant views, but it should not be automatically assumed that this is the case. All views, however zany, should be carefully considered rather than rejected out of hand; it may be the researcher’s imagination that is the limiting factor. If there is misunderstanding about the nature of the project it is the responsibility of the PI or another member of the team to provide clarification so that future input can be more useful.
2. Do try to make the partnership experience enjoyable for the PPI volunteers. Health and Social Care research is serious business and volunteers will be keen to show serious intent in their contributions. However, there is no reason why meetings cannot be kept light and friendly with a touch of humour and opportunities for mini celebrations at milestones in the development and progress of the project should be exploited.
3. Understand that patient/carer volunteers have more than usual life problems to overcome. Many of those attracted to volunteering to health research have a long term condition and are un- or under-employed. Their condition frequently imposes restrictions in mobility, dexterity, concentration or other normal functions and appreciating this should determine how volunteer involvement is managed throughout the duration of the project. Suitability and accessibility of meeting venues, timing and length of meetings, provision of refreshments and language used should all be planned for the convenience of the lay volunteers.
4. Never under-estimate PPI volunteers. In the early stages of a relationship between a research team and volunteer group, it is impossible for the researchers to know much about those with whom they are engaging. A great variety of persons are attracted to this volunteering role – and that is exactly as it should be – but the activity is particularly attractive to individuals who have worked in related areas in the past or have held intellectually demanding roles in other fields. It is clearly beneficial for both sides of the partnership to get to know each other well as soon as possible. For researchers, it is advisable not to make unwarranted assumptions on the calibre of their volunteers on the basis of appearance or they may be the ones to end up looking silly!
5. Do not patronise volunteers. This follows on from the point above and is all about the courtesy and respect that should be accorded to volunteers. Sadly, when someone falls sick and becomes a patient (or client) there is an instant loss of status and it doesn’t really matter (with the exception perhaps of the nobility) who or what that person was in the past. It is most obvious I believe, in the hospital situation when patients are at the bottom of the pecking order when professional staff, of all cadres, are at least one notch above. Unfortunately, this can carry over into later life when you are an ex-patient, especially if you are engaged with that as a primary qualification. Do not make excuses for volunteers however well intentioned. Condescension will be recognised and resented although it may not be remarked upon, as I have said before, PPI is all about partnerships, equal partnerships.
*Clinical Psychology Forum No. 241, 41-44, January 2013.