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• To understand the concept of patient and public involvement (PPI)
• To familiarise yourself with the role of PPI in mental health research
• To improve your knowledge of the practical and ethical implications of PPI
Patient and public involvement (PPI) involves working with patients and/or members of the public to make mental health research more relevant for those using mental health services. The importance of PPI means that it is necessary for mental health researchers to understand the practical and ethical issues involved. PPI can make a positive contribution to mental health research, but mental health researchers need to consider how to ensure PPI is meaningful and to identify the optimal methods for its evaluation. It is also important that PPI is undertaken ethically by considering issues of consent, professionalisation, authorship, payment and tokenism.
Involvement in PPI should be voluntary, inclusive and collaborative and mental health researchers need to anticipate the potential practical and ethical challenges involved and develop strategies to deal with these effectively.
Mental Health Practice. doi: 10.7748/mhp.2020.e1481
Peer reviewThis article has been subject to external double-blind peer review and has been checked for plagiarism using automated software
Correspondence Conflict of interestNone declared
Parkinson B, Lawrence M, Booth J (2020) Patient and public involvement for mental health researchers. Mental Health Practice. doi: 10.7748/mhp.2020.e1481
Published online: 03 November 2020
Patient and public involvement (PPI) describes research that is undertaken in partnership with patients and/or the public (National Institute for Health Research (NIHR) 2018). PPI can assist in making research more person centred and relevant for the wider community (Hahn et al 2017). Optimal examples of PPI in mental health research include a recent project to develop a shared decision-making app for young people (Edridge et al 2018), and a reflection on the role of people with lived experience of mental health being members of research teams and co-applicants on clinical trials (Lea et al 2020). Similarly, research has been effectively co-produced by people with lived mental health experience (Faulkner et al 2019).
The range of studies involving PPI shows the various ways that it can be used in mental health research and emphasises the importance of all mental health researchers being familiar with PPI (Ennis and Wykes 2013). Ennis and Wykes (2013) examined the use of PPI in mental health research and found that it had been increasing in recent years, but was less likely to be used in research exploring personality disorders, developmental difficulties and social interventions.
Brett et al (2014a) reviewed the potential advantages of PPI for researchers and discovered a number of benefits:
• Pertinent research objectives.
• Improved participant documentation.
• Improved recruitment.
• User-orientated analysis.
• Enhanced dissemination.
A second review explored the effect of PPI on the patients and public involved and found evidence of them developing improved confidence and feeling valued (Brett et al 2014b).
As the evidence for the effectiveness of PPI grows, its use in mental health research is becoming increasingly expected (Ennis and Wykes 2013), and it is often a requirement when applying for grant funding or publishing in academic journals (Price et al 2018).
• Patient and public involvement (PPI) can assist in making mental health research more person centred
• Mental health researchers should involve people with lived experience of mental health issues at every stage of the research process
• Being aware of the practical and ethical implications of PPI can assist mental health researchers and PPI members to produce meaningful mental health research
• Meaningful PPI should involve partnership working and diversity to reflect social complexity
The move towards increased PPI has developed despite uncertainty in several areas, such as how best to implement it, how to make it meaningful and how to evaluate its effect (Ocloo and Mathews 2016). The implementation of PPI can be assisted by considering its various roles and functions in mental health research. One structured consensus group found that PPI can contribute to research by identifying priorities, shaping research design and sharing the findings (Gray-Burrows et al 2018). However, Price et al (2018) stated that sometimes researchers find it challenging to use PPI in systematic reviews, despite the many examples of PPI being used effectively in this type of research.
In a study of the use of PPI in health and social care systematic reviews, Boote et al (2011) found several examples of PPI being used effectively, including a service user-led review that examined patients’ perspective of electroconvulsive therapy (Carr and Fleischmann 2007). Boote et al (2011) found that PPI can make a worthwhile contribution at every stage of the research process, but a lack of funding and time pressures were identified as potential barriers. There are also examples of PPI being effectively used by doctoral students exploring self-harm in older adults (Troya et al 2019), which showed the varied ways that PPI can be incorporated into mental health research and how it can add value to every stage of the research process (Bagley et al 2016).
Ensuring that PPI is meaningful is an important consideration for mental health researchers and extends beyond simply implementing it into research. Ocloo and Mathews (2016) suggested that current models of PPI are too narrow, and can inadvertently render PPI overly exclusive when the membership is not representative of the wider patient group (Ocloo and Mathews 2016), or when the same group of people are involved repeatedly (Paul and Holt 2017). Meaningful PPI involves partnership working between researchers and PPI members; it should capture the ‘voice’ of previously unheard people and ensure that marginalised groups are being properly represented in research (Hoddinott et al 2018). O’Hara and Lawton (2016) supported this argument by emphasising the diversity that exists in patient groups and suggesting that researchers need to improve their ability to encourage various sectors of society to engage in PPI. Therefore, meaningful PPI should involve partnership working and diversity to reflect social complexity (Ocloo and Mathews 2016).
Evaluating PPI is another challenge for mental health researchers. Edelman and Barron (2016) stated that PPI is often evaluated in terms of research success and quality; however, it is important not to mistake PPI for an intervention with reproducible methods and quantifiable outcomes (Staley and Barron 2019). Also, this narrow focus on research success and quality overlooks the complexity of PPI and the potential benefits experienced by PPI members (Edelman and Barron 2016). Rose (2014) stated that PPI is concerned with more than simply involving patients and/or the public in research and can be empowering and emancipatory for those involved.
Holistic evaluation is required to assist in capturing the varied effects PPI can have on research activity and the people involved. Any holistic evaluation should consider the influence PPI has had on the study itself, the researchers involved, the PPI members and wider society. It is also useful to consider PPI as a meaningful dialogue between various parties with a focus on learning outcomes for the researcher and PPI members (Staley and Barron 2019). The potential for mental health researchers to learn from PPI makes it an important developmental tool for researchers at every stage of their career and creates an opportunity for them to develop and enhance transferable skills such as an understanding of lived experience, problem-solving, and decision-making, which are necessary for effective research (Staley and Barron 2019).
A Delphi study conducted in Belgium identified potential challenges associated with PPI including difficulty finding suitable PPI members, lack of financial support and the inclusion of members who have vested interests in the outcome of the research (Cleemput et al 2015). Careful planning can reduce the negative effect of these factors; for example, various providers are starting to offer financial support to fund PPI activity such as the NIHR research design service (Boote et al 2015), and websites are available to assist in recruiting people for PPI (People in Research 2020).
Hoddinott et al (2018) suggested that it was important for PPI members to consider whether they have any conflict of interest when engaging in PPI activity because this could negatively affect the credibility of the research being undertaken. Researchers are routinely asked to self-disclose conflicts of interest when publishing their work and engaging in other scholarly activities (Bruton and Sacco 2018). Similarly, any concerns about conflict of interest in PPI could be resolved by asking PPI members to self-disclose any possible conflicts of interest. The International Committee of Medical Journal Editors (ICMJE) produces a standard self-disclosure template that is suitable for use by researchers and PPI members (Drazen et al 2010).
It is also worth considering the possible risks for PPI members themselves. A systematic review explored the effect on PPI members and found that some experienced negative consequences, for example being overburdened by the work such as having to listen to people’s lived experiences or the need to understand technical documentation (Brett et al 2014b). Therefore, it is important for mental health researchers to be alert to the possibility of negative consequences for PPI members and to ensure that their contribution is manageable and not burdensome.
PPI is increasingly being used in mental health research, but this change in practice brings ethical considerations (Ennis and Wykes 2013). Uncertainty about the ethical requirements for PPI has resulted in some researchers being asked to seek ethical approval and gain written consent from PPI members (Boote et al 2015). However, using a formal written consent process and seeking ethical approval for PPI would create a power imbalance and jeopardise the collaborative nature of the research (Smith et al 2009). This position is supported by INVOLVE (a national advisory group that is part of the NIHR) and the Health Research Authority, which provided a joint statement stating ethical approval is not required for PPI (INVOLVE 2016).
While formal research ethics committee approval might not be necessary, it is still important to ensure PPI activity is undertaken ethically; for example, agreement to participate in PPI should be given freely and in full knowledge of what will be involved (Hoddinott et al 2018). A recent Delphi study involved 25 researchers and sought to establish what they regarded as the ethical issues associated with PPI (Bélisle-Pipon et al 2018); the study identified four main concerns:
• Professionalisation of PPI members.
• Authorship.
• Determining appropriate payment for PPI activity.
• Avoiding tokenism.
Concern about professionalisation relates to whether PPI members are being overused and/or socialised to the research community (Bélisle-Pipon et al 2018). Professionalisation causes concern because it is thought PPI members might become over-socialised to the research ‘world’ and stop reflecting the patient group they are meant to represent (Ives et al 2013). Professionalisation of PPI members might occur as a result of providing them with training in research methodology. While this training may be required to assist PPI members in fulfilling their research role, it can also influence them to consider mental health research from the perspective of researchers and/or funders (Ives et al 2013).
Conversely, Staley (2013) stated that this training is important precisely because it assists PPI members to fulfil their role and is a perceived benefit of PPI. Similarly, PPI members have reported that a lack of adequate preparation can sometimes prevent them from fulfilling their role effectively (Brett et al 2014b). Equally, it is not necessary for all PPI members to be trained in research and it can be beneficial to include some members who possess no research experience or training in certain activities such as checking the language used in participant documentation (Hoddinott et al 2018).
Concern about authorship and appropriate acknowledgement of PPI in published work is another ethical concern that has been identified by researchers (Bélisle-Pipon et al 2018). This concern reflects the importance placed on academic authorship and the associated ethical implications of being an author (Horner and Minifie 2011). The ICMJE (2020) suggested that authorship should be based on whether a person has made a substantial contribution to the research process, critically drafted the manuscript for intellectual content and approved the final version for publication, as well as whether they will be held accountable for the published work.
While the ICMJE assists in determining authorship for academic publications, Shaw (2011) suggested that its guidance is unsatisfactory because even legitimate researchers might sometimes find it challenging to achieve all of the authorship criteria. This reflects the strict criteria used in the academic community to decide author status, but also details the challenges of authorship in the context of PPI, for example the fair recognition of authorship for PPI members (Bélisle-Pipon et al 2018). Hewlett et al (2006) sought to resolve the issue of authorship by emphasising that the rules of authorship should apply equally to researchers and PPI members. Alternatively, formal acknowledgement can be used when people have made a contribution to a research piece but do not meet full criteria for authorship (ICMJE 2020).
Payment for PPI activity is also a common ethical dilemma for mental health researchers and especially those working with a limited budget (Bélisle-Pipon et al 2018). Hoddinott et al (2018) recommended that payment is agreed for PPI before commencement of the research and that researchers should consider the optimal method of payment, for example whether cash or vouchers would be preferred. INVOLVE (2016) recommended payment at an appropriate level for the PPI activity completed. It also stated that appropriate payment should cover the PPI member’s time, the efforts involved in completing the activity, the expertise that person brought to the role and any expenses incurred during the PPI activity, for example, accommodation and travel.
How to avoid tokenistic PPI is another ethical challenge detailed by researchers (Bélisle-Pipon et al 2018). Tokenistic PPI is regarded as superficial and undertaken as a tick-box exercise to please funding bodies or other external partners (Paul and Holt 2017). Tokenistic PPI can occur in any research or with any funding body and involves situations where PPI members are only involved in a minor capacity and have limited influence over the study.
Avoiding tokenism requires a long-term commitment and enduring relationships with PPI members (Hahn et al 2017). Involving PPI in every stage of the research process, respecting each other’s expertise and working in partnership are also essential ingredients for avoiding tokenistic PPI (Ocloo and Mathews 2016).
Finally, to ensure PPI is ethical, and to maximise its potential in mental health research to improve quality and relevance, Hoddinott et al (2018) suggested that people should be appropriately compensated for their efforts and that their involvement is:
PPI involves mental health researchers working in partnership with patients and/or the public to produce higher quality research. This partnership working is important at every stage of the research process and can make mental health research more person centred and relevant for people experiencing mental health issues.
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