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Collaborative and consultative patient and public involvement in sexual health research: lessons learnt from four case studies
  1. Lorraine K McDonagh1,2,
  2. Paula Blomquist2,3,
  3. Sonali Wayal2,4,
  4. Sarah Cochrane5,
  5. Josina Calliste2,
  6. Jackie A Cassell2,6,
  7. Natalie Lois Edelman7
  1. 1 Research Department of Primary Care and Population Health, University College London, London, UK
  2. 2 National Institute for Health Research Health Protection Research Unit in Blood Borne and Sexually Transmitted Infections, University College London, in partnership with Public Health England and in collaboration with London School of Hygiene and Tropical Medicine, London, UK
  3. 3 Blood Safety, Hepatitis, Sexually Transmitted Infections (STI) and HIV Division, Public Health England, London, UK
  4. 4 Centre for Population Research in Sexual Health and HIV, Institute for Global Health, University College London, London, UK
  5. 5 Unity Sexual Health, University Hospitals Bristol NHS Foundation Trust, Bristol, UK
  6. 6 Departmentof Primary Care and Public Health, Brighton and Sussex Medical School, Universityof Brighton, Brighton, UK
  7. 7 Centre for Health Research, School of Health Sciences, University of Brighton, Brighton, UK
  1. Correspondence to Dr Lorraine K McDonagh, Research Department of Primary Care and Population Health, University College London, London NW3 2PF, UK; l.mcdonagh{at}ucl.ac.uk

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Background

Patient and public involvement (PPI) refers to research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.1 PPI can include patients, carers, service users and the public, referred to here as ‘lay advisors’ (can also be called PPI experts, public advisors, stakeholders, experts by experience). PPI entails contributing in varying degrees to the design, development, conduct, data analysis and dissemination of research.2 Involvement can be consultative (single episode), collaborative (ongoing) or user controlled (actively controlled, directed, and managed by service users).3

PPI is now commonly required in research funding proposals. There are national UK standards for conducting PPI,4 and considerable guidance on how to identify and engage with lay advisors (eg, tailoring PPI to the needs of the study and the willingness of representatives),5 and how to evaluate the impact of PPI.6 7 Most guidance addresses PPI in the context of intervention studies and/or long-term conditions (including long-term stigmatised conditions)8 where lay advisors are sought through regular clinic attendance, patient support groups or charities. In contrast, there is little guidance or precedence on conducting PPI for episodic infection involving singular attendance (eg, chlamydia), for studies which seek to describe population characteristics or risk factors, or for study populations defined by stigmatised behaviours.9 Much sexual health research fits within one of these scenarios, making PPI in this field challenging.9–11

The aim of this paper, therefore, is to share experiences of conducting PPI in sexual health research. Successes and failures from four studies are discussed (see table 1 for an overview of each study). Lessons learnt are presented in relation to three stages of PPI activities: (1) determining who to include as lay advisors; (2) identifying where to access lay advisors; and (3) engaging with those who have agreed to be involved.

Table 1

Summary of case studies for PPI in sexual health research

Stage 1: who to include as lay advisors

Ideally, lay advisors are individuals who fit the criteria of being a prospective end user—that is, they belong to the population who stand to benefit from the study findings. However, lay advisors offer lay perspective and thus should not be expected to be representative of all those who might comprise the intended study population.3 Nonetheless, divergent opinions (including backgrounds and experiences) should be sought. Lay advisors will have their own priorities and reasons for involvement, and as such a diversity in views will help ensure the research produced is holistic and that PPI activities are inclusive and meaningful rather than tokenistic.

It may not always be possible to include potential end users if the population is particularly hard to reach (eg, prison populations, disenfranchised groups or social and cultural minorities). In such instances, it may be beneficial to engage instead with individuals who work with and so have insight into the target population, as was the situation in case study 1 (box 1).

Box 1

Case study 1: the Caribbean Women, Well-being and Risk Study (CaWWRiS)

One of the aims of this study was to understand the social, cultural and historical factors associated with poor sexual health in young Black Caribbean women aged under 25 years.

Who to include as lay advisors?

Black and minority ethnic groups can experience heightened stigma related to STI diagnoses and may be hard to reach for researchers. For one component of this study, researchers opted to engage with Black Caribbean women who worked with diverse populations of young people within sexual health organisations. Specifically, lay advisors were not enlisted on the basis of having personally experienced poor sexual health (eg, an STI diagnosis), but for their experiential insight as women with Black Caribbean heritage and connections to both youth and sexual health professional networks.

Where to access lay advisors?

To access Black Caribbean women with insight into sexual health and diverse populations of young people, the researchers discussed the project at conferences and events, as well as within their extended professional and social networks. Those who expressed interest were then provided with more detail about the project in individual follow-up informal meetings. Given that the health and well-being of Black Caribbean women is often neglected, these representatives working in the sexual health sector were enthusiastic to support this research.

How to engage with lay advisors?

Researchers intended to have a lay advisory group, however, three lay advisors preferred to be involved through individual one-to-one discussions, in the first instance. These informal chats allowed the researchers and lay advisors to talk through person-specific concerns that they might not have otherwise been willing to talk through in detail in a group, and helped build a relationship with each individual. Following these initial individual meetings, the lay advisory group met biannually to support the project in the form of group round-table discussions. The advisors had an understanding of the sensitivity of sexual health work with both young people and Black and minority ethnic communities, and provided much knowledge relevant to each stage of the study.

It can also be difficult to conduct PPI for epidemiological studies for which the target population is not well described (precisely because the study is seeking to identify those descriptors). In such cases, the end users of a study may need to be defined in terms of broader demographics, locations or other proxies. Broadening or thinking creatively around the definition of end user may enable greater levels of consultation and collaboration. This is illustrated in case study 2 (box 2) in which the definition of end user was broadened due to the stigma associated with the outcome behaviours of interest and because the sociological descriptors of this population were unknown (and sought in the study).

Box 2

Case study 2: the PADCAT study (‘Psychosocial And Demographic Clinical Assessment Tool’)

The aim of this study was to develop a clinical prediction rule to identify women attending general practices (GP) who would benefit from sexual health advice, STI testing and/or contraceptive advice and supply.

Who to include as lay advisors?

Defining the end user by high-risk and stigmatised experiences proved problematic. After initial attempts (see the following section) no women came forward offering to be involved. Therefore, it was decided to use a new broader definition: any female GP attendee between the ages of 16–44 years, regardless of sexual history.

Where to access lay advisors?

Despite GP staff distributing the patient and public involvement (PPI) role description to patients during consultation and being advertised on the People in Research website, no women were interested in being involved. Consequently, in addition to broadening the definition of who to include, the researchers decided to predominantly access women opportunistically during their attendance for a GP appointment. In addition, a local youth forum in a deprived area was approached with a view to setting up female-only group consultations.

How to engage with lay advisors?

The researcher approached women in GP waiting rooms and with their permission discussed study materials and plans while they were waiting for their appointment. Two group consultations were carried out at the youth forum, where recruitment plans and study materials were reviewed and discussed. One young woman also agreed to collaborate as a lay advisor on the condition that she would do so remotely and anonymously using Skype calls and feedback on study documents via email. She remained involved in the project as an active collaborator for more than 1 year.

Regarding episodic and easily treatable infections (such as chlamydia), it may be more relevant—and easier—to access the general public, as highlighted in case study 3 (box 3). However, the ease of accessing individuals within that definition should also be considered. For example, as described in case study 3 (box 3), the population of interest was 15–24 year-olds. As including individuals below 16 years of age would have required parental consent,12 the researchers opted to include those aged 16 and over.

Box 3

Case study 3: the YS study (‘You and Sex’)

The aim of this study was to explore barriers and facilitators to chlamydia testing via general practice for young people.

Who to include as lay advisors?

The population of interest was 15–24 year-olds as chlamydia rates are highest among this age group. The inclusion of those under 16 years, however, was associated with additional hurdles related to collaborating with minors (ie, the need for parental consent). Thus, the researchers opted to include only those aged 16 and over as lay advisors. Additionally, the team felt it was not necessary for lay advisors to have experienced chlamydia testing or a positive diagnosis, but to have the potential to be offered—that is, the general public.

Where to access lay advisors?

The researchers reached out to several young people’s charities and organisations requesting any interested parties to contact the researchers; no young people got in touch. Existing young people’s patient and public involvement (PPI) committees were contacted but waiting lists were often long. Subsequently, the team decided to access the population of interest via advertisements on online social media platforms (eg, Facebook, Instagram and Twitter). Advertisements directed people to the study page, which included a secure section to enter contact details (phone or email) and the most suitable times/days to be contacted by the researchers. This approach was found to be successful; over 20 young people provided contact details within 24 hours.

How to engage with lay advisors?

Four young people agreed to be involved in this specific project (note: some who completed the contact form became involved in other related studies being conducted by the team). The researchers originally intended to have a lay advisory panel who met quarterly. However, during initial phone conversations, it became evident that this would not be feasible. Researchers discussed preferred method of communication with each potential advisor; two agreed to collaborate remotely (one via email, one via phone), and two (who were friends) preferred to meet the researchers in person. Lay advisors gave invaluable input on study materials, particularly on the name of the study, the study logo and recruitment materials (eg, adverts, Facebook pages). Their involvement greatly improved the accessibility of the study.

Stage 2: where to access lay advisors

In lieu of accessing lay advisors via traditional routes to PPI (eg, patient-centred communities, organisations, charities and services), our studies capitalised on other routes. These included: opportunistic networking at public events and conferences, and conversations via existing social and professional networks (case study 1) (box 1); leaflets distributed during medical consultations and opportunistic approach in clinical settings (case studies 2 and 4 in boxes 2 and 4) and advertisements on social media platforms (eg, Facebook, Instagram, Twitter; case study 3 in box 3). Any approach to finding lay advisors outside of the research community can be effective. Proactiveness and creativity from researchers are key, particularly if stigma can act as a disincentive for lay advisors.

Box 4

Case study 4: identifying sexual healthcare needs among women with problematic drug use

The aim of this study was to identify the sexual healthcare needs among women with problematic drug use.

Who to include as lay advisors?

The intended end users of this study were women experiencing problematic drug use, including those not in drug treatment. However, given the sensitive nature of the study, the decision was taken to recruit lay advisors from among those who were actively engaged in drug treatment on the basis that they would be able to draw on prior knowledge and that safety was paramount.

Where to access lay advisors?

Role descriptions were provided to key workers at a National Health Service (NHS) drug service, and were distributed to clients who met the role criteria. Six women subsequently contacted the research team using the phone number provided on the role description. Of these, two elected to become collaborating members of the research team.

How to engage with lay advisors?

During an initial phone conversation, the preferred means of engagement were discussed. Both lay advisors chose to attend research team meetings, one of whom received childcare costs from the study team to enable this. Neither advisor had internet access at the start of the study, therefore, in-between meetings, documents were sent for review with a stamp addressed envelope included. One of the lay advisors also elected to copresent the patient and public involvement (PPI) strategy to the Society for the Study of Addiction in order to raise awareness of how PPI is possible with this population. The recruitment strategy, study advertisement plan and data collection materials were all heavily influenced by the lay advice.

In addition to the message content, the style of the invitation and use of language may impact the likelihood of successfully accessing lay advisors. Academic terminology and jargon, particularly that which attempts to encapsulate or define risk groups, may act as a disincentive to that particular group.5 As can be seen from case study 2 in box 2, redefining the end users meant that women were approached for consultation purely on the basis of their attendance at a general practice, without the need to describe themselves as at risk of STIs or unintended pregnancy as part of that process.

Stage 3: how to engage with lay advisors

PPI guidance for all types of research states that, from the outset, researchers should clarify the remit and goal of PPI activities.4 It should also be evident how PPI differs from research particularly qualitative research,13 which can cause confusion if lay advisors are invited in similar ways to participant recruitment or if an advisory group is consulted on a one-off basis. The importance of this distinction cannot be understated for research on stigmatised conditions or behaviours. This should be discussed during initial meetings with lay advisors, as well as being stated in advertisements and role descriptions (during the access phase above). Additionally, the scope of involvement and intentions of each party should be discussed in order to avoid misunderstandings or tensions due to conflicting agendas (such as those that may arise from scientific hierarchical power dynamics).14 Transparency is essential in order to build positive working relationships based on mutual trust and respect.

A particular concern when working in sexual health and stigmatised behaviours is that lay advisors may wish to keep their involvement in research private.11 Researchers should explore and be responsive to lay advisors’ preferences regarding communication to make it less threatening and easier to become involved. Lay advisors should be given various methods and options for involvement so they can contribute in whatever way they are most comfortable with. This can range from anonymous, one-to-one, remote conversations to group discussions with a friend (case study 3 in box 3), and can involve the use of pseudonyms and/or online communication (case studies 2 and 3 in boxes 2 and 3). Similarly, if training is to be provided to lay advisors, it also needs to be conducted in a way that maintains anonymity and/or confidentiality, such as using online resources.

From a practical standpoint, it may be necessary to overinvite in order to: (1) compensate for lay advisors who drop out; (2) balance those who cannot commit to collaborating throughout the project; (3) ensure a range of views are heard; and (4) allow tasks/roles to be shared among lay advisors to alleviate advisor burden. For example, in case study 2 (box 2), role description forms inviting lay involvement were handed out to as many women as possible for these reasons. In case study 4 (box 4), six women initially were enrolled to be involved, however, only one stayed involved for the duration of the study. Perhaps for this study, it would have been more beneficial to distribute tasks to multiple advisors, rather than expecting all six to be involved for full duration of project.

Conclusion

Evidently, existing PPI guidance has limited utility for sexual health research. As illustrated through our case studies, innovative and flexible approaches are required which operate ethically and within the broader purposes of PPI, and ultimately widen opportunities for patients and the public to have a voice in research which impacts them.

In relation to determining who to include as lay advisors, it is important to keep in mind that lay advisors offer lay perspective—the goal is not to seek full representation from the target population. Additionally, much can be gained through expanding definitions of end users and involving those with insight (such as professional proxies) into population of interest. Researchers should also consider alternative routes to access, as traditional routes to PPI may not be fruitful for episodic infections and stigmatised behaviours and experiences. It is essential to avoid academic terminology and jargon in adverts and to ensure that the end user population is described in acceptable terms—a lesson which applies to PPI across all health domains. Lastly, due to the very nature of sexual health research, lay advisors may wish to remain anonymous; researchers should provide lay advisors with variability regarding preferred method of communication and involvement, in particular harnessing online and other remote means of conversing.

Several limitations warrant mention. For these case studies, PPI was conducted after funding was secured and study aims were set. Future research may benefit from involving lay advisors earlier in the process to help identify research priorities. Another PPI approach which may be fruitful is ‘user-controlled PPI,’ where patients and the public design and conduct the research. Future research may also benefit from the application of research methodologies, such as coproduction, which place patients/public and professionals on an equal footing through every stage of the research project.15

Through our struggles in conducting PPI, we became aware of how defining end users, approaching them and finally engaging with them as lay advisors were distinct challenges, but also opportunities for innovation. PPI does not need to be overly prescriptive; essentially, we were researchers seeking insight from individuals outside of the research community. We made it less threatening and easier for the public to get involved by offering numerous ways of communicating, from group round tables to one-to-one Skype conversations. We found that respectful, communicative and mutually beneficial relationships between the researcher and lay advisors, underpinned by clear PPI goals for each study, were essential to successful PPI, and ultimately for successful and impactful research. Careful and considered planning of all these different elements cannot be understated; tools such as our PPI Planning and Assessment form available in online supplementary appendix 1 can be useful to this end.

Supplemental material

Evidently, there is no single unified patient or public voice—preferences, motives and intentions will naturally differ. As such, no single approach for conducting PPI is ideal. Researchers must consider what is best for patients and public, what is actually required for their research and must carefully consider issues of representativeness, diversity, tokenism and power16 before embarking down this path. It is hoped this paper will offer others—both within and outside of sexual health research—the opportunity to learn from our failures and successes, particularly when doing ‘difficult’ PPI.

Acknowledgments

We are grateful to all the patients and members of the public who became involved in our research. We are also grateful to the NIHR HPRU in Blood Borne and Sexually Transmitted Infections Steering Committee: Caroline Sabin, John Saunders, Catherine Mercer, Gwenda Hughes, Greta Rait, JAC, Sema Mandal, Tim Rhodes, Samreen Ijaz, Kholoud Porter, William Rosenberg.

References

Footnotes

  • Handling editor Sarah K Edwards

  • Contributors NE conceived the idea for the paper. All authors (LMD, PB, SW, SC, JOC, JAC and NE) contributed to writing early drafts of the paper. Case study 1 was conducted by JOC. Case studies 2 and 4 were conducted by NE and case study 3 was conducted by LMD. LMD and NE prepared the final manuscript with contributions from all coauthors. All authors read and approved the final manuscript.

  • Funding This paper is an independent research by the National Institute for Health Research. The research is funded by the National Institute for Health Research Health Protection Research Unit (NIHR HPRU) in Blood Borne and Sexually Transmitted Infections at University College London, in partnership with Public Health England and in collaboration with the London School of Hygiene and Tropical Medicine (grant number: HPRU-2012-10023). Case study 4 presents independent research commissioned by the NIHR, under the Research for Patient Benefit Programme (PB-PG-0407-13149).

  • Disclaimer The views expressed in this publication are those of the authors and not necessarily those of the NIHR, the Department of Health and Social Care, or Public Health England.

  • Competing interests None declared.

  • Patient consent for publication Not required.

  • Ethics approval Not required.

  • Provenance and peer review Commissioned; externally peer reviewed.

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