When things don’t go to plan: The realities and challenges of user involvement in research Dr Tracey Williamson Research Fellow - Older People/User Involvement Salford Centre for Nursing, Midwifery & Collaborative Research

Introduction During the session I hope we reach some answers to the following questions: Why is this topic important? What are the challenges for ‘professionals’ working with ‘users’ Between us have we got any real-life examples we have learnt from? How can we manage these issues better in future?

Aliens and earthlings? A word about labels

Why is this topic important? Professionals are encouraged to ‘do’ user involvement Some are well placed to do it There is an expectation that they can ‘How to do it’ is a recent concern How to do it well is a growing concern Examples of doing it well abound Less public are tales of things that did not go to plan Who cares for the researcher? - often lone and/or participatory Is involvement common sense or an art?

What are the challenges for professionals working with users? Working in equal partnership Being empowering Differing expectations Choice of who to work with Emotional labour – I’m a thinking feeling person locked in the body of a professional!

The emotional labour: Real life examples Dealing with: Sabotage – older people as co-researchers Withdrawal – patient representative co-researchers Failure (funding, users’ influence) – co-applicants Orchestrating it to happen – advisors

Mini case study group activity – sabotage The setting - regular team meetings with university researchers and lay researchers, study 18 months +: One member is: Disruptive Critical – negatives not positives Inappropriate about own peer group Dis-charitable Influencing peers Fostering a ‘them and us’ climate Tarring all researchers with same brush Whispering How would you deal with this situation?

Mini case study group activity – withdrawal The setting - Regular team meetings with university researchers and lay researchers; study 14 months +: One user member by Suddenly declares user involvement principles being ignored Suggests professional team members taking over Informs leaving with immediate effect How would you deal with this situation?

What we did………………..

Mini case study group activity – sabotage Lay researchers took over chair role to diffuse power and illuminate challenge of chairing, changed seating arrangements (uni researchers spread out), arrived early to set meeting tone, avoided engaging in grumbling, encourage own meetings/time with no uni presence, revisited ground rules, drew line under year end – symbolic fresh start Mini case study group activity – withdrawal ed back, spoke to team, checked out other user views, explored learning/changed practice (more users next project – too late now), follow up call by non-team member, careful minuting of meeting, re-checked notes and tape of reflection interview held with team members

Mini case study group activity – co-applicants Idea from lay people 2004, through formal NSF group so needed responding to, Stroke Club visit, failed Trust bid, research bid after encouragement from Stroke Association, failed bid, attempt to link with stroke researchers, missed opportunity -Trust addressing now Mini case study group activity – advisors Challenge to engage interest, careful s to European Commission/NPSA/SHA/PCT/User Forum, user meeting to gain insight and support, meeting to gain user involvement, seek funding and research partners, choice of involvement (advisory/tool design), evolving design options to fit other stakeholder interests not user views

Effects these issues have had personally Walking on egg-shells – to the point of self-disempowerment Wanting to stay in bed – but have a paid job to do Tears, rants and scolded pets, children and partners Late nights and prioritising involvement work over other work and family commitments Tempted to do clinical trials research instead On a more positive note: Has encouraged discussion and coping strategies Support network being set up for colleagues Good practice examples shared e.g. discussing relationships, revisiting ground rules

Personal conclusions We should not empower others to the detriment of ourselves – needs to be a ‘win win’ In future, make clear to users we all have feelings, rights and expectations and to discuss these Bust the myth - not all users are nice people Sometimes you have to work with what you’ve got - but some ‘selection process’ may well be appropriate We need to develop the evidence base for involvement – what worked and why AND what didn’t work and why

Thank you for listening Dr Tracey Williamson Research Fellow University of Salford Tel