Sophie Staniszewska leads the Patient and Public Involvement (PPI) and Experiences of Care Research Programme at the RCN Research Institute, Warwick Medical School, University of Warwick. She has carried out a wide range of studies related to PPI and patient experience. She is currently working with EQUATOR to develop the first international guidance to enhance the quality of PPI reporting. Until recently Sophie chaired the Evidence, Knowledge and Learning Group of INVOLVE and she is now an INVOLVE Associate having completed her term of office. She is also a member of the NETCC PPI Group, a steering group member of the Health Technology Assessment International Patient/Citizen Involvement Group and co-chairs the HTAi Patient/Citizen Methods and Impact Group. Sophie is Vice-chair of the NIHR Breaking Boundaries Review of PPI.
One of the key areas for me is around the capture and measurement of the impact of PPI. This often causes a lot of discussion and people have a wide range of views. I think our discussion reinforced the continued interest in qualitative capture and quantitative measurement and my view that it’s a bit like Marmite – you love it or you hate it.
I firmly believe in the feasibility and need of qualitative capture and quantitative measurement and I think we need to develop robust instruments that capture impact, based on clear conceptual frameworks (Staniszewska et al 2011). We also need to think about embedding PPI within methodological thinking. For example in the field of patient-reported outcome measurement (PROMS), there is significant interest in exploring how we involve patients in collaborative ways in the development of instruments (Staniszewska et al 2012). Ideas of co-production in PROMS need more exploration in the future. The advantage of embedding PPI methodologically is that it would become core business, rather than an added on process. There is potential to apply this in many areas of research, which is very exciting but challenging!
The final area I wanted to reflect on was PPI and its relation to implementation (Staniszewska et al 2013). Implementation, or how we put research evidence into practice, as a field has grown enormously in the last decade. However, we are only at the start of exploring how patients, the public and service users can contribute to this agenda. .
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