Public involvement is a legal requirement when undertaking major strategic changes to health and care services. What is the evidence that it improves strategic outcomes and what factors increase such impacts?
What is public involvement?
Patient and public involvement (PPI) in research is defined as the research being carried out ‘with’ or ‘by’ the members of the public as oppose to changes being made ‘to’, ‘about’ or ‘for’ them (NIHR 2019.) Through the Care Quality Commission (CQC,) their Public Engagement Strategy has set out to achieve a more targeted, responsive, and collaborative approach to public involvement. This is to harnesses the power of the people’s voices throughout their regulatory work and to help empower people to expect and choose good quality care (CQC 2017). There has been considerable momentum within the NHS over the last 10 years to develop greater patient and public involvement (Ocloo 2010).
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What does this involve?
Public involvement revolves around patient safety. The drive to increase public involvement in patient safety and learning from incidents has increasingly been noted as an important way to build a safe culture (Ocloo 2010). Public participation can be a means of engaging diverse stakeholders which will give access to new knowledge, create power relationships transparent, adapt activities to change and develop conditions, and encourage both ownership and accountability of the change management process (Armitage et al. 2007). Consultation is more often the norm, than collaboration (Ocloo 2016).
The importance of PPI
Patient involvement is crucial as patients and lay representatives can offer different viewpoints to research teams. This can go on to help develop and create new solutions as well as to improve the design and delivery of research. Without patient participation there would be no research carried out, as PPI allows the for the patient’s voice to be heard throughout the design and implementation, as well as through direct participation. This can also build up the knowledge and confidence of people who take part, increasing future contributions to the wider health and social care outcomes. By building the confidence of the participants, it allows challenges to be made against the traditional power balance between medical and lay people. A lay person is a person who is untrained, qualified, or experienced in a particular subject or occupation.
What can help public involvement?
The CQC is a governing body within the health and social care sector and can play a powerful role in encouraging providers of health and social care services to improve how they engage the public by monitoring and assessing how well they find out, listen to and act on the views of people who use their services.
What can hinder public involvement?
First being able to understand who “the public” are, what they need from us and how we can reach them effectively is key to ensuring a beneficial public involvement. This includes understanding of changes to engagement need to be addressed over time, as new technologies develop and the way people interact with services evolves. The health and social care system is complex and many people are not aware of, or do not fully understand the role it plays in society as well as the many different organisations that are involved, including that of CQC; nor do they understand which and how an organisation can best meet their individual needs.
There are many different factors can affect the impact of public involvement within research. The extent of which a person is involved in the process, the expertise and skills the person has within the topic of interest, the type and stage of the research, the participants person reasons for involvement, and people’s knowledge of the aims and expectations of the research project/issue (Health Talk 2017). Some healthcare professionals and organisations have not embraced the idea of partnership with patients and even feel threatened by the notion of active involvement. This can in turn cause a barrier by making people feel they do not have much to contribute (Ocloo 2016).
The researchers’ attitudes can have an impact of the research to whether it is a success or failure, this can be due to the researching seeing involvement as tokenistic and do not involve the public in the correct way or offer them appropriate training and support. Lack of appropriate and accessible information about getting involved or about the involvement opportunities is a large barrier to involvement (Ocloo 2016). This could be done without the researches knowing as evidence about what is ‘the right way’ to involve people is very little. (Health Talk 2017). Tokenism is where an act is carried out only to show that rules are being followed as this is what is expected or seen to be fair, and not because the person involved wants to believe it is the right thing to do.
Empowerment theory in relation of public involvement
It has been recognised that different levels of participation are appropriate in different circumstances. It is clearly important to deliberate and decide which level is important and consider how this will impact and influence decision-making (Ocloo 2016).
The empowerment theory suggests that participation with others to help to achieve goals, gain a broader access to resources, as well as gaining insight into the basic understandings of the socio-political environment. Empowerment is both a value orientation for working in the community and a theoretical model for understanding the process and consequences of efforts to influence decisions that affect the public and/ or functioning of an organisation (Perkins & Zimmerman 1995). Rappaport's (1987) argues that the empowerment concept only provides a useful general guide for developing preventive interventions in which the participants feel they have an important stake. Empowerment theory provides principles as well as a framework for organising our knowledge. The development of empowerment theory has also helped advance the concept away from political manipulation (Zimmerman & Warschausky 1998).
Arnstein Ladder of Citizen Participation, presented a deliberately provocative take on the relationship between the public and the government by using a ladder as a metaphor for increasing access to decision-making power. This ladder is a guide to establish who has power initially when important decisions are being made. (Appendix 1).This model of participation has survived has continued to be used for many years because people continue to confront the processes that refuse to consider anything beyond the bottom rungs of the ladder (Arnstein 1979).
The ladder has eight-rung and it helps to illustrate the point of the significant gradations of citizen participation and how this can impact on the processes of decision making. By knowing and understanding these graduations, it allows for an understanding to be made on the increasing vocal demands for participation from the disadvantaged of confusing responses from the power holders. It is argued that whilst Arnstein’s model is still used, by solely emphasising power, it limits effective responses to the challenge of involving the public and undermines the potential of their involvement in the decision making process (Tritter and McCallum 2015).
It should be noted that the typology does not include an analysis of the most significant roadblocks to achieving genuine levels of participation. These roadblocks lie on both sides of the simplistic fence.
In addition to its limitations, Arnstein’s ladder also ignores the presence of several dangerous snakes, all of which limit or undermine the ability of this model to increase public involvement. The snakes relate to the impact of the model not only on public engagement but also within voluntary organisations. This increases the potential to limit sustainability and promote decisions based on the dictatorship of the majority (Tritter and McCallum 2015).
Public involvement and legitimacy
Despite a great deal of practical knowledge and research, stories abound of participation failures; legitimacy is one of the most contested features of public participation. This has been typically expressed in terms of the adequacy of participation or representation as well as the technical or political workability of the decision outcomes that have been made and the procedural overall fairness of the process (Innes and Booher 2004).When public participation is not seen as legitimate, it can alienate the public from government and disrupt the implementation of policy decisions (Ozawa 2012).
Power theory in relation of public involvement
At the organisational and public level, models of co-creation are increasingly being noticed as a way of addressing the power imbalances by designing and delivering public services in more democratic and equal approach between professionals and the public. Whilst there is no one way of carrying out co-production, there are six principles that can help to reinforce this practice (Ocloo 2016). Within a case study, it was found that there were in fact nine mechanisms of closer collaboration relating to the principles of co-production. The theory of co-production provided a useful insight into what it is about the qualities needed for collaborative working that inspire these essential mechanisms transform knowledge into best practice (Heaton et al 2016). (Appendix 2)
In terms of PPI in patient safety, there are power inequities that have been highlighted at the individual and collective level of care in different ways. Evidence shows that there is an active knowledge and status imbalance between patients and practitioners which has an effect on the ability of a patient to adopt safety-related behaviours (Ocloo). Research carried out by Peat and Entwistle et al. found that the safety interventions which were the most successful required patients and their representatives to be well informed and knowledgeable on the topic of interest. In patient safety however, there has been very little debate about how issues of power and empowerment may affect the involvement processes and the experiences of the different groups (Ocloo). In addition, Peat et al. found that many patients were found to be uncomfortable and unwilling to challenge health professionals in neither their opinions nor practice.
While the patient and public involvement (PPI) evidence base has expanded over the past decade, the quality of reporting within papers has been discovered that it is often inconsistent, limiting to our understanding of how it works, in what context, for whom, and why. (stanzi…) Some researchers have reported that public involvement simply provided the motivation momentum they needed to get started, as one researcher described, ‘without the consumers’ participation, the project would not have got off the ground’, (Ross et al. 2005).
‘Public engagement’ is where information and knowledge about research is provided and disseminated. This can be through events, media coverage, social media and newsletters.
For definitions of the terms, abbreviations and organisations referenced in this document please refer to our Jargon Buster in Appendix One. (NHSI)
Representation, power and authority – who is represented, how much influence they have (legitimate or otherwise) and what tactics can be used to address exclusion – are central, abiding concerns in the quality and legitimacy of public participation processes (Young 2000).
Applying this general framework to an organisational level of analysis suggests that empowerment includes organisational processes and structures that enhance member participation and improve goal achievement for the organisation.
A distinction between the values that underlie an empowerment approach to social change and empowerment theory is necessary. The value orientation of empowerment suggests goals, aims, and strategies for implementing change.
(Perkins & Zimmerman, 1995; Rappaport, 1981; Zimmerman & Warschausky, 1998).
Similarly empowerment research focuses on identifying capabilities instead of cataloging risk factors and exploring environmental influences of social problems instead of blaming victims. Empowerment-oriented interventions enhance wellness while they also aim to ameliorate problems, provide opportunities for participants to develop knowledge and skills, and engage professionals as collaborators instead of authoritative experts.
Strategic outcomes – public participation in research
Extra 2 runs of the ladder – Wilcox
9. Ownership of ideas
People are most likely to be committed to carry something through if they have a stake in the idea. One of the biggest barriers to action is ‘not invented here’. The antidote is to allow people to say ‘we thought of that’. In practice that means running brainstorming workshops, helping people think through the practicality of ideas, and negotiating with others a result which is acceptable to as many people as possible.
10. Confidence and capacity
Ideas and wish lists are little use if they cannot be put into practice. The ability to do that depends as much on people's confidence and skills as it does on money. Many participation processes involve breaking new ground tackling difficult projects and setting up new forms of organisations. It is unrealistic to expect individuals or small groups suddenly to develop the capability to make complex decisions and become involved in major projects. They need training - or better still the opportunity to learn formally and informally, to develop confidence and trust in each other.
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The 7/8 Debate Roger Hart's Ladder of Participation shows young people-initiated, shared decisions with adults as the top form of young people's participation, followed immediately by young people-initiated and directed. This is somewhat controversial an issue for many people working with and around young people. Essentially, the debate is which of these levels of participation is actually the most meaningful? (Hart)
Some researchers have reflected on which factors contribute to involvement having an impact, these relate to the quality of the involvement process and its ability to influence decision-makers. (Stayley) The finding of a systematic review concluded that much of the evidence concerning the impact remained weak and a great enhancement of this needed to be carried out. (Brett) This has lead to others commenting on the challenges of assessing impact and the difficulty in predicting where involvement will have the greatest impact. (Stayley) A systematic review by Brett was found that the data presented was brief and lacked detail. This was due to the data that was captured being descriptive and the results found were unable to be measured quantitivley . The overall suggestions were that both qualitive and quantive reports needed to be carried out to measure the impact of public engagement.
Others have concluded that more work is needed to identify how public involvement brings added (Stayley) Wilson adds to this recommendations that while the benefits of PPI have been widely discussed, there is a lack of evidence on the impact and outcomes of PPI within research. A paper by Ocloo argued that whilst there has been a considerable debate about increasing PPI in health care for many years, the evidence suggested that progress has been variable in health care and considerably slower in patient safety. The recommendations were suggested that the research into PPI was lacking the critical, theory-driven approach to analysing processes.
Despite these policy developments, there have been an increasing number of criticisms about the nature of PPI in practice. There is uncertainty about how to do it well, in ways that constitute genuine partnerships and which involve a diversity of patients and the public, rather than
a few selected individuals (ocloo) There is a great uncertain as to how big an influence this has. This is because funding organisations have been no clear to whether and how much this public involvement has influenced their research funding decisions. (Lindenmeyer et al. 2007).
There has been very little critical analysis of public involvement in the literature. Most studies have asked simple questions about whether involvement makes a difference and what kind of difference it makes. The few studies that have attempted to address more complex questions (for example when and where does involvement have the biggest impact) have reached similar conclusions about the limitations of the evidence available. They have also highlighted the difficulty in drawing out more general conclusions when the impact of involvement is so context-specific.
Ultimately, what is needed is greater attention to evaluating the impact of user involvement on the practice of healthcare and health outcomes. Processes of user involvement seek to transform the culture of healthcare. This requires as much focus on the professional development of providers as the education and recruitment of users. Understanding user involvement as a small part of a larger system helps bridge the divide between micro level changes and system-wide reforms. (Tritter and McCallum 2015).
- Ocloo J. Harmed patients gaining voice: challenging dominant perspectives in the construction of medical harm and patient safety reforms. Social Science &Medicine, 2010; 71: 510–516.
- Peat M, Entwistle V, Hall J, Birks Y, Golder G. Scoping review and approach to appraisal of interventions intended to involve patients in patient safety. Journal of Health Services Research & Policy, 2010;15: 17–25
- Wilson P, Mathie E, Keenan J, et al. ReseArch with Patient and Public involvement: a RealisT evaluation—the RAPPORT study: Health Services and Delivery Research; 2015. p. 3. doi:10.3310/hsdr03380.
- Stephens R, Staniszewska S. One small step…. Research Involvement and Engagement; 2015. p. 1. doi: 10.1186/s40900-015-0005-8.
- Handbook of Community Psychology pp 43-63 | Cite as Empowerment Theory Psychological, Organizational and Community Levels of Analysis Marc A. Zimmerman
- Zimmerman, M. A. (1993, April). Empowerment theory: Where do we go from here. Paper presented at the annual meeting of the Midwest Psychological Association, Chicago, II.
- Rappaport, J. (1987). Terms of empowerment/exemplars of prevention: Toward a theory for community psychology. American Journal of Community Psychology, 15, 121-148.
- David Wilcox RRA Notes (1994), Issue 21, pp.78–82, IIED London
- Arnstein, S.R. (1979) Eight rungs on the ladder of citizen participation. Journal of the American Institute of Planners, 35, 4: 216–224.
- Armitage, D.R., F. Berkes, and N. Doubleday. 2007. Adaptive co-management: collaboration, learning and multi-level governance. University of British Columbia Press, Vancouver, British Columbia.
- Health talk 2017 Patient and public involvement in research http://www.healthtalk.org/peoples-experiences/improving-health-care/patient-and-public-involvement-research/value-and-impact-patient-and-public-involvement
Collaborative research and the co-production of knowledge for practice: an illustrative case study
- Implementation Science201611:20 https://doi.org/10.1186/s13012-016-0383-9 © Heaton et al. 2016 https://implementationscience.biomedcentral.com/articles/10.1186/s13012-016-0383-9#Abs1
- Innes, Judith E. and David E. Booher (2004), ‘Reframing public participation: Strategies for the 21st century’, Planning Theory and Practice, 5 (4), 419–436.
- Ozawa, Connie P. (2012), ‘Planning resilient communities: Insights from experiences with risky technologies’, in Bruce Evan Goldstein (ed.), Collaborative Resilience: Moving through Crisis to Opportunity, Cambridge, MA: MIT Press, pp.19–38
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