Social illness

The Theory, Barriers and Enablers for Patient and Public Involvement

MEEFRO December 20, 2022

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How do we challenge systemic marginalisation and tackle the power imbalances implicit in service delivery and research?

Can Patient and Public Involvement (PPI) in research and service delivery play a key role, if we do it right?

The NIHR defines PPI as:

doing research ‘with’ or ‘by’ people who use services rather than ‘to’, ‘about’ or ‘for’ them.

The UK standards for Public Involvement state that inclusive opportunities, working together, support and learning, governance, clear and timely communication, and sharing impact are fundamental features of PPI.

Dr Josephine Ocloo et al (2021) have conducted a systematic review of reviews (an umbrella review) highlighting barriers and enablers to PPI. The authors use this paper to reflect on the evidence around how genuine and meaningful PPI could be conducted with particular attention to patient safety.

Patient and public involvement is critical to challenging systemic marginalisation and oppression of under-represented groups.

Methods

The authors conducted a systematic review of reviews following Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA) guidelines. Their search strategy pays appropriate attention to terminology given the breadth of terms associated with the involvement process. Three electronic databases, MEDLINE, EMBASE and PsycINFO, were searched up to August 2018. Inclusion criteria focused on public involvement in strategic healthcare decisions and service improvement rather than patient involvement in their own care which has a distinct literature. Specifically, the type of studies included were systematic reviews which focussed on published empirical studies or theoretical papers in any organisational setting (e.g., primary care, mental health, hospital, tertiary care etc). The quality of identified reviews was assessed using the Assessment of Methodological Quality of Systematic Reviews (AMSTAR 2) tool (Shea et al., 2017).

Results

42 reviews were included, grouped, themed and analysed using an iterative and inductive process.
People who were able to be involved in PPI were willing to be involved, but there were many barriers which may make it difficult for involvement to be truly meaningful and collaborative.
Lay people perceiving their status to be ‘subordinate to that of clinicians’ (p. 6) was a barrier to involvement. Parallel to this, a need for services to shift away from paternalism and towards ‘equal partnerships’ (p.6) was noted.
Health professionals can enable involvement by promoting a relationship that allows for questioning, correction, listening and encouragement. They can provide clarity of roles and expectations, and clear and accessible knowledge and information.
Support for lay people could scaffold their involvement, for example, training, emotional, practical and financial support.
Power and control are significant enablers when appropriately shared through equal partnerships, co-learning and reciprocity. They are barriers when professionals feel defensive or that they are losing control by sharing it, and when there are hierarchical and paternalistic attitudes which create ‘passive recipients of medical expertise’ (p. 9). For PPI to become embedded, organisations’ commitment is required to support staff to embrace power sharing relationships, and to avoid PPI seeming tokenistic.
Recruitment of people taking part in PPI is complicated and the easiest people to recruit are unlikely to represent a diverse range of experiences. Engaging with specific community organisations was seen as one way to address this, and working with communities to agree the terms and language needed to create a ‘level playing field’ (p. 10).
The review found that there was little theory used in the application of PPI. One source of theory for this field is from the different groups and social movements who have historically experienced services as harmful and oppressive such as People of Colour and LGBTQ+ people. Widening involvement and using theory to illuminate and strengthen the underlying values can be used to address underlying power imbalances.

Power and control can be both a barrier and an enabler of patient and public involvement.

Conclusions

Equality and diversity is an overlooked yet critical aspect of PPI. Discrimination and inequality compound the power imbalance that exists in involvement. If this is appropriately attended to at systemic and organisational levels, there is an opportunity to genuinely involve patients in research and strategic decision-making in an empowered and mutually beneficial way that simultaneously challenges structural inequality.

Despite the increasing popularity of patient and public involvement, there are still considerable barriers to involvement in practice.

Strengths and limitations

A strength of this review is that it incorporated a wide range of reviews across health, social care and patient safety, allowing key themes to be reported from across disciplines. In their assessment of quality of the included reviews, 29 of the 42 reviews included were assessed as being of low or critically low quality and the authors included these but did not treat them with ‘high confidence’ (p.4). It is a shame that such a high proportion of the included reviews were of a low quality and somewhat weakens the conviction of the findings.

Over half of the studies included in this review were assessed as being low or critically low quality.

The majority of the studies included in this review (29 out of 42) were assessed as being low or critically low quality.

Implications for practice

I (LM) think this paper is of significant interest to professionals embarking on involvement initiatives. In my experience, Equality Diversity and Inclusion (EDI) and PPI can be addressed as separate initiatives by organisations and I had not really considered how representative of structural inequality PPI could be. I have also reflected on the potential of PPI to be a vehicle for systemic change. Time taken in the early stages of PPI (facilitated at an organisational level) could result in research and systems that embrace people who have historically been under-represented or marginalised by services.