How helpful are Patient and Public Involvement strategic documents - Results of a framework analysis using 4Pi National Involvement Standards

Abstract

BackgroundPatient and Public Involvement (PPI) strategic documents are viewed as an essential feature of organisational commitment to openness and transparency. They provide a mechanism to communicate opportunities for wider community influence in healthcare. The absence of documentation can be negatively interpreted, for example during regulatory inspection, as a lack of intent by organisations to collaborate with a broad constituency. Published literature paints a confusing picture of rationale and evidence that could provide the foundation for strategic action. This makes it difficult for those responsible for turning goals into meaningful involvement. We investigated how content is presented and organised in strategic documents. This pragmatic study is intended to stimulate reflective practice, promote debate and generate further inquiry with a wide audience.MethodsWe created and iterated a framework adapted from 4Pi National Involvement Standards to analyse organisational PPI strategic documents against five domains which are principles, purpose, presence, process and impact. Fifteen strategic documents were grouped into four categories (acute care providers; clinical commissioning groups; community healthcare providers; and other) and included for analysis. A matrix was produced. By reading the matrix vertically (down) and horizontally (across), comparisons can be made between 4Pi domains and across organisations.ResultsThere was no discernible pattern between domains or between organisations. There was variation in the level to which criteria were met. No single strategy fully met the criteria for all five domains of 4Pi National Involvement Standards. The criteria for purpose was fully met in eight strategic documents. Only two documents fully met impact criteria. Four organisations showed better completeness with fully or partially met criteria across five domains. A single organisation partially met the criteria for all domains. The remaining 10 were unable to meet the criteria in at least one domain.ConclusionOur findings align with published literature that suggests the underpinning rationale for PPI is confusing. A strategic aim is difficult to articulate. Context and complexity are at play making the sharing of generalisable knowledge elusive. We offer further critique about the value of these documents and consider: ‘is there an alternative approach to construct PPI strategy to generate theory, capture learning and evaluate effectiveness at the same time?’ We suggest testing the adoption of programme theory in PPI. The emergent nature and context sensitive features of programme theory enable curiosity, creativity and critical appraisal. It has the potential to release practitioners from the tokenistic cycle of monitoring and reporting and replace this with a richer understanding of ‘what’ works and ‘how’ tied to a ‘why’ – in order to achieve a shared aim that everyone can get behind.

Reporting on patient and public involvement (PPI) in research publications: using the GRIPP2 checklists with lay co-researchers

“…Members of the public include a wide range of people including: patients, potential patients, family carers, service users, people using health and social care services as well as people from organisations that represent people who use services [9]. To support this growing area of research, a range of patient and public involvement (PPI) guidelines, frameworks and standards have been developed for researchers and PPI contributors alike [9][10][11][12][13]. In the UK, National Standards for Public Involvement were launched in 2018 and updated in November 2019 to "improve the quality and consistency of public involvement in research" [14] .…”

Exploring disconnected discourses about Patient and Public Involvement and Volunteer Involvement in English health and social care

“…This, in turn, would more sharply demarcate the claims of PPI while locating its status within organisations and the wider world of volunteering. Such a discursive resolution is apparently sought and certainly needed, given the constantly expressed regrets about lack of agreement or shared understanding among PPI interest groups, about what PPI is and should be 9,10 …”

“…PPI in health research and service decision‐making is commonly described as ‘imperative’ for improving patient experiences 8 . However, following decades of implementing PPI, a marked lack of agreement or even shared understanding of what it is and should be persists among those interested in PPI or even those involved in it 9 . A repeated criticism of PPI is its being conducted as little more than a ‘tick box exercise’ 10 .…”

“…A repeated criticism of PPI is its being conducted as little more than a ‘tick box exercise’ 10 . While it is seen to be embedded in practice, in varying ways and degrees, this is rarely comprehensive, and so presents as having negligible impact 11,12 . Locock et al 13 (p. 836) also point to research into PPI as being conceptually and theoretically poor, reducing our knowledge to its “mechanisms” and “contextual elements.” This suggests the need for further discursive critique of PPI in health and social care policy documents.…”

“A little (PPI) MAGIC can take you a long way” : involving children and young people in research from inception of a novel medical device to multi-centre clinical trial Roald Dahl, James and the Giant Peach (1961)

“…Matthews et al reported that documents intended for the public are often not written with the public [ 29 ]. PPI provides the opportunity for the public to have their say and to be viewed by a “fresh-eyed reviewer” [ 30 ], influencing health care to their bespoke needs.…”