Researchers' experiences of patient & public involvement

Skills needed for involvement

We discussed with researchers what skills they felt they needed to work effectively with patients and members of the public. Ceri and Eric summarised many of the skills identified by their colleagues as: ‘ability to listen, courtesy, humanity, open-mindedness, communication and person skills, a little bit of caring nature’ and a ‘willingness to translate… to take what people say and think, “Actually how would this be useful?”’

It is perhaps obvious to say that researchers need good communication skills – importantly including the ability to listen as well as explain things in accessible language – but as Rebecca noted, such skills don’t always come easily or naturally, and extra training may help. (See ‘Training needs for involvement’). Valerie suggested this was one good reason to have a professional PPI co-ordinator who can bring some of the facilitation skills and experience researchers may lack, and Bernadette recommended using external facilitators in some situations, who might ‘make things more equal’. At the same time, Sabi suggested researchers themselves are best placed to explain their research and can’t really delegate that to a coordinator. (It was evident that people designated as PPI leads or coordinators had very different roles and levels of seniority – some might be very hands-on while others fulfilled a more strategic role. See also ‘Organisational support and leadership for patient and public involvement’.)
Alongside good communication, several researchers stressed the importance of flexibility, creativity and keeping an open mind. It was acknowledged that sometimes there were difficult conversations to be had, to prevent people from going ‘off-topic’ or handling a situation ‘if one patient is much more vocal and is taking over’, as Fiona put it. However, Sabi, David and Andy noted that sometimes people may be saying something more useful than it may appear at first. Good chairing and facilitation were key skills identified by many of the researchers we spoke to.
One of Rebecca’s tips was to do some advance planning and set ground rules, though at the same time wanting to maintain flexibility and informality. Kristin described how her early attempts to be informal in involving young people had not been as successful as she hoped, and she now tries to make it more organised and structured. However, Hayley described the importance of her youth work skills in making meetings engaging, informal and not too much like school. Chris stressed the importance of just being hospitable.
Several people commented that although checklists and guidelines for involvement can be helpful, there is no one right way to do it and that learning from both one’s own and others’ real-life experience can be invaluable. (See also ‘Learning from experience of involving patients and public).
Learning from experience also means learning from mistakes, and the ability to reflect critically on oneself. Several researchers identified the ability to recognise one’s own limitations as an important skill. As Bernadette put it, ‘You actually need to be humble and think “Well, maybe the patients know better than me what some of the research should be about”. And I guess you need a good analytical mind so that you can process all the information and sort of look at it objectively.’ Tom likened this to the shared decision model of care: ‘These days doctors are trained to say “actually I don’t know, shall we find out together?”’

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