REPORT SUMMARY NIHR standards for patient and public involvement: Exploring why and how to develop and use them (May 2016)

1. Patient and Public Involvement Standards Project Working in partnership with colleagues across the National Institute for Health Research (NIHR) community, the Central Commissioning Facility (CCF) and INVOLVE are leading a project to develop NIHR-wide, organisational standards for patient and public involvement (PPI). This project will address the second of eleven recommendations in the ‘Going the Extra Mile’ report http://tinyurl.com/llekart: "The NIHR should commission the development of a set of values, principles and standards for public involvement. These must be co-produced with the public and other partners. They should be framed in such a way, and with a clear set of self-assessment criteria, so that organisations across the NIHR see their adoption as integral to their continuous improvement in public involvement". This builds on the foundations of work on PPI values principles and standards undertaken and reported by INVOLVE: http://www.invo.org.uk/wp-content/uploads/2015/11/Values-and-Principlesframework-final-October-2015.pdf.

2. Workshop A workshop was the first step in the development process. This one day event was conceived, planned and delivered by CCF’s PPI team and INVOLVE, with the support of Crowe Associates Ltd. It was held in London on the 17 March 2016 with 47 participants representing a diverse range of NIHR research organisations. Participants included people with responsibility for leading and supporting PPI in NIHR organisations, members of the public involved with those NIHR organisations and observers from other organisations. The workshop was organised into three sections; reflecting on the meaning and purpose of standards in PPI practice; exploring the development and application of PPI standards and self assessment using examples to stimulate discussion and eliciting feedback from workshop participants about how implementation plans could be progressed.

3. Views from workshop participants A word association exercise revealed more positive than negative associations with concepts of standards and self assessment. Most commonly associated words with standards were 'quality' and 'consistency'. For self assessment associated words were 'reflection', 'honesty' and 'evaluation'. What are the pros and cons? The' SWOT' analysis (Strengths, Weaknesses, Opportunities and Threats) exercise showed healthy cynicism and caution as well as many positive attributes and benefits of having PPI standards and self assessment for the NIHR and in general for PPI. Key questions for the PPI Standards Project would include reconciling tensions of standards that set minimum PPI expectations, but also seek to raise the overall quality of PPI, accountability and ownership of a PPI standards and self assessment process, and how standards will work in diverse NIHR organisations, the NIHR structure and research culture. Page 1 of 2

What can we learn from existing models? Through a process of rapidly reviewing and critiquing existing PPI specific and non specific frameworks of standards and/or self assessment, participants were able to reflect on what they liked and disliked and what might work for PPI standards and self assessment across NIHR. Desirable features included:        

simple and easy to use in practice (for NIHR staff and involved public) address minimum expectations of NIHR organisations build in a stretch element to the standard that takes organisations beyond the minimum, and encourage continuous improvement distinguish between standards for activity and outputs, and those for impact build in a building block element that takes account of different types of NIHR organisations and their PPI needs place the PPI values alongside the standards, this helps the context consider different formats that are accessible and available in different media self assessment process should enable different people to participate e.g. involved public, researchers, PPI leads, organisational leaders.

Cautionary advice for developing the standards and self assessment was that it not be too prescriptive and academic, or so simple to miss nuanced elements of PPI in research such as differentiating between engagement and involvement. Some felt strongly that the tool should be based on research evidence, and that this would encourage 'buy in' from researchers.

4. Next steps (TBC = to be confirmed)     

Circulate the summary and the full workshop report for feedback from workshop participants and the wider NIHR community (May 2016). CCF and INVOLVE to consider and agree next steps (June/July 2016 TBC). Circulate project outline to workshop participants and the wider NIHR community, inviting comment and nominations for involvement in the project (June/July 2016 TBC). Explore with Health and Social Care Northern Ireland their Personal and Public Involvement Standards and Assessment http://www.publichealth.hscni.net/directorate-nursing-andallied-health-professions/allied-health-professions-and-personal-and-publi-5 (May 2016). Explore with NICE their Quality Standard for Community Engagement (for improving health and wellbeing) which is currently recruiting to their advisory panel (May 2016).

Participants were clear how the PPI Standards Project should take shape:  effective leadership and a pragmatic time scale  creating ownership within each participating NIHR organisation, and across NIHR  a process that is transparent, equitable to stakeholders and has clarity of purpose  a process that builds on what we already know - evidence, examples  methods that enable a larger number of people to comment but are also manageable  use technology to connect people e.g. virtual spaces to discuss, vote and share ideas

This summary is an extract from an independent report prepared by Crowe Associates Ltd from a workshop held on 17 March 2016. To access the full report please visit the NIHR website: http://www.nihr.ac.uk/CCF/PPI/PPIstandards_wshop2016_FINAL.pdf

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