Toolkits mountain - Patient Experience Library (September 2023)

Summary

Patient and public involvement (PPI) is, these days, a given in healthcare policy and practice. Providers, commissioners, policymakers and researchers all state the importance of hearing from service users about what matters to them.

This "involvement imperative" has given rise to a plethora of guidance notes, checklists, frameworks and toolkits, all purporting to show what good practice in PPI looks like. The Patient Experience Library decided to carry out a mapping exercise, to see how much guidance there is, and to see if they could make sense of it all.

Content

Findings:

• They found 536 toolkits - a vast landscape of well-meaning advice.
• In a ten-year period between 2012 and 2022, PPI toolkits were being published at an average of one every two weeks.
• In the five years between 2016 and 2020, they were coming out at the rate of one a week.
• There is extensive duplication.
• Over 100 toolkits offer general guidance on patient and public involvement.
• Another 100 or so offer guidance on involvement in research.
• At the same time, there are big gaps.
• They found just 4 toolkits with a specific focus on engagement with Black and minority ethnic groups, 4 for LGBT patients and service users, and 4 for people with physical disabilities. For people with learning disabilities there was just one.
• There is a serious lack of co-ordination and prioritisation.

The resulting report (attached) tells the full story of how they scaled the toolkits mountain, and what they saw from the top. You can also visit an interactive online visualisation, helping users to see for themselves what the toolkits are, and what topics they cover.

Authors hope that both the report and the visualisation will be explored by national bodies - in particular the National Institute for Health Research, NHS England's Health Inequalities Team and NHSE Library and Knowledge Services.