About this research 

We searched the literature from several sources (reviews, academic journal articles, case studies, reports, commentaries) to understand how are patients and members of the public involved in the decisions affecting the organisation and delivery of health services. In total, we included 31 studies from the UK and Canada. 

Click here    if you would like to see a list of the 31 studies.

We also looked into the concept of Patient and Public Involvement (PPI), how the PPI process is perceived by those involved and the impact PPI has on proposals for change. It also emerged during the review that local opposition to the changes has an influence on the PPI process. 

Below you will find our results and you will be able to give your opinion on the right (at the bottom for the mobile version)!

 

1. PPI definitions and concepts  

 

  • There is little agreement on what ‘Patient and Public Involvement’ (PPI) is and entails.

  • In the UK literature the terms ‘involvement’ or ‘engagement’ are distinct from the term ‘consultation’ probably due to the fact that it is a legal requirement for NHS bodies to hold a consultation with the public before significant changes to service delivery. The term ‘engagement’ is used in the UK literature to refer to PPI activities taking place before the formal consultation.

  • There are no mention in the literature included in this review about guidelines or frameworks used to conduct PPI. 3 pieces of literature in our review briefly refer to an academic framework (Arnstein's ladder).

 

2. Methods of PPI 

  • Who was involved? It is not clear which groups of the local community were involved in PPI activities. The literature refers to 'service users', 'patients', 'members of the public' without further detail. It is not clear whether the people most affected by the changes or people who tend to find healthcare access harder (such as people from deprived areas) were included. Some studies questioned how much the people involved were representative of the local community generally. Interest groups could have a bigger say and not enough people may have heard of the PPI events.

  • When is PPI taking place? It was often unclear at what stage of the large-scale change PPI activities took place. Some authors advocated that it should start when plans for change are being drafted but only five cases included seem to have done so. 

  • What is the purpose of PPI? Some researchers criticised the absence of clear aims and limitations for PPI. In particular, little thinking was done about what is the purpose of PPI, who to involve and how to conduct it. Only a few UK studies mentioned their purpose for PPI: because it is a legal requirement. 

  • What methods for PPI are most effective? The studies included described a wide range of methods to involve people (e.g.: public meetings, surveys, committees, events in the communities, flyers, website, summary leaflets...) but few commented on those methods. Therefore there is a lack of evidence in the literature on which methods are most effective or appropriate in the context of large-scale change. 

  • Public meetings (or town hall meetings) were the most used method for PPI. They were criticised for being poorly attended by the general community, too focused on interest groups and confrontational in nature. Alternatives could include surveys and events taking place in the community. Public meetings are accompanied by a consultation document, which can be very long, complex in its layout and language. As a result, it is difficult for the public to understand the proposed changes and how would services be accessed after the changes to health services occur.

  • Researchers agree that changes need to be communicated in plain English and with clarity about the clinical evidence for the change, preferably by a clinical expert (rather than a manager).

  • Studies suggest that PPI needs to happen in different ways at different stages of change, depending on whether health services want to inform, discuss, consult or partner up with people from the community.

3. Views on the PPI process

  • There is very little information on how the different actors perceived the PPI process but members of the public often felt they did not have an influence on decision-making – despite contributing to public meetings and other PPI activities – as decisions on changes had already been made before PPI. This left the public dissatisfied or frustrated with the PPI process.

  • This lack of influence on decision-making leads to an environment of mistrust, where commissioners and managers pushing the case for change are seen to be using PPI as ‘a front for persuading communities to accept decisions which have already been made – and which were probably motivated by a desire for cost reductions.’

  • In this context, recommendations are that concerns raised by the public should be listened to, understood and taken under consideration, in a manner that the public can see. Additionally, clinicians and GPs should be involved in PPI activities to give clinical credibility to the proposals. 

 

 

 

 

 

4. Impact of PPI

  • The impact of PPI is rarely discussed, in particular how PPI influenced decisions regarding the reconfiguration proposals. It could be because PPI activities are only considered as tick box exercises, reflecting the public’s perceptions that they could not influence the proposals or because conducting PPI activities is seen an end in itself.

  • None of the literature included shed light on how patients’ and public’s feedback – especially when PPI activities yielded thousands of responses – was processed and included in decision-making.

  • There is a general lack of evaluation of PPI activities in the context of change (only 2 studies included were evaluations). Some of the literature included mentioned that an external partner evaluated the PPI activities but without giving names or references that could be followed-up. It is therefore difficult to grasp what impact PPI has on reconfiguration proposals or to establish any links between the impact of PPI with the methods used to gather the public’s feedback.

 

5. Local opposition

  • Changes which relocate, centralise or close services that the community perceives as leading to unacceptable long travel times and putting lives at risk, can encounter strong local opposition, especially in an existing environment of mistrust.

  • Opposition was described in the form of large amount of letters received opposing the proposals, petitions against the proposed changes (with more than a million signatures in one case), large demonstrations and rallies, ‘Save our hospital’ campaigns and some campaigners taking actions to counteract the arguments put forward for the case for change.

  • In cases with strong local opposition, proposals for change were altered; sent for judicial review or referred to the Independent Reconfiguration Panel (in the UK) as a result of local opposition. Thus, it would seem that public opposition is a more important driver to changes in reconfiguration proposals than the inputs of PPI.

  • Local politicians, clinicians and the media coverage of changes can influence community opinion and impact PPI processes.

  • Drafting changes in partnership with local clinicians, patients and the public as well as discussing them with the media and politicians can lessen concerns and opposition.

6. Gaps in research and practice

 

  • There is some indication that a mixture of PPI methods is needed at different stages of the reconfiguration process but the literature lacks evidence on which methods are most appropriate in this context.

  • This review shows that despite the wide range of methods for PPI available, PPI activities described in the literature remain mostly tokenistic in nature creating dissatisfaction and frustration in members of the public involved as well as mistrust towards those pushing the change agenda.

  • Another crucial gap in the literature is around how the inputs from PPI activities are processed and included in decision-making and what kind of impact PPI might have on reconfiguration proposals.

  • Additionally, in the context of large-scale change, public opposition is to be expected yet the findings of this review do not enlighten us on how PPI activities can help resolve the controversy.

  • Research on the topic is limited and therefore the most informative source is grey literature (non-commercial or academic publications, for example government's reports). It was difficult to scope all relevant grey literature and to locate it.

  • It was also problematic to locate international literature, as databases generated mostly UK and Canadian literature.

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The comments included in our review will remain anonymous. 

Thank you very much for your time and comments!