Using social media for patient and public involvement and engagement in health research: The process and impact of a closed Facebook group

Abstract Background As part of a multifaceted approach to patient and public involvement and engagement (PPIE), alongside traditional methods, a closed Facebook group was established to facilitate PPIE feedback on various aspects of a project that used video‐recording to examine risk communication in NHS Health Checks between June 2017 and July 2019. Objective To explore the process and impact of conducting PPIE through a closed Facebook group and to identify the associated benefits and challenges. Methods Supported by reflections and information from project meetings used to document how this engagement informed the project, we describe the creation and maintenance of the Facebook Group and how feedback from the group members was obtained. Facebook data were used to investigate levels and types of engagement in the closed Facebook group. We reflect on the challenges of using this method of engaging the public in health research. Results A total of 289 people joined the ‘Risk Communication of Cardiovascular disease in NHS Health Checks’ PPIE closed Facebook group. They provided feedback, which was used to inform aspects of the study, including participant‐facing documents, recruitment, camera position and how the methodology being used (video‐recorded Health Checks and follow‐up interviews) would be received by the public. Discussion Using a closed Facebook group to facilitate PPIE offered a flexible approach for both researchers and participants, enabled a more inclusive method to PPIE (compared with traditional methods) and allowed rapid feedback. Challenges included maintaining the group, which was more labour intensive than anticipated and managing members' expectations. Suggestions for best practice include clear communication about the purpose of the group, assigning a group co‐ordinator to be the main point of contact for the group, and a research team who can dedicate the time necessary to maintain the group. Conclusion The use of a closed Facebook group can facilitate effective PPIE. Its flexibility can be beneficial for researchers, patients and public who wish to engage in the research process. Dedicated time for sustained group engagement is important. Patient or Public Contribution Patient representatives were engaged with the development of the research described in this paper and a patient representative reviewed the manuscript.


| INTRODUCTION
Patient and public involvement and engagement (PPIE) is an integral part of health service development and delivery. 1 The core concept of PPIE is that research is carried out 'with' or 'by' members of the public instead of 'about' or 'for' them. 2 National Institute for Health Research (NIHR) states members of the public in the context of patient and public involvement include patients, potential patients, carers and people who use health and social care services as well as people from specific communities and from organizations that represent people who use services, people with lived experience of a health condition whether they are current patients or not. 3 Increasingly funders, policy makers and research organizations in the United Kingdom expect health research to be carried out involving patients and members of the public. For example, for NIHR applications, it is compulsory to a have budgeted and resourced PPIE lead role and Wellcome and UKRI are also committed to PPIE. This involvement increases the likelihood of the needs of patients being met and results in more responsive services and improved health outcomes. 4,5 Patient and public involvement has been used in cancer research, exploring patient priorities for palliative care and identifying research priorities for cancer patients in treatment centres in the United Kingdom. Activities include the definition and prioritization of research topics, development of recruitment strategies, participating in data analysis and supporting dissemination. 6 Patient and public involvement has been used in consultation activities and priority settings in health technology assessment such as projects summarizing the evidence on clinical effectiveness and safety of wearable cardioverter-defibrillator therapy for primary and secondary prevention of sudden cardiac arrest in patients at risk and exploring patients' perspective regarding cervical cancer screening with human papillomavirus cotesting. 7 Community members of the public and community-engaged research patients who had experienced myocardial infarction were invited to take part in a focus group discussion to share past experiences and provide input and advice on the design of a research proposal for designing a clinical pharmacy primary care intervention for myocardial infarction. 8 Challenges of carrying out meaningful PPIE include the time that needs to be dedicated to PPIE activities to accomplish the goals of the study and managing differing expectations of members of the research team. 9 The positive impacts of working with the patient and public representatives are wide-ranging and include developing userfriendly research objectives, user-friendly information and appropriate recruitment strategies resulting in enhanced quality of research. 10 Members of a PPIE group exploring the experiences of people living with or caring for someone living with a mental illness have described the process as meaningful, enabling them to use their experiences to act as advocates for their community and helping them to reframe their narratives as 'experts by experience' following periods of acute illness. 1 Having experience of a health condition often prompts individuals to seek knowledge of aetiology, prognosis and service provision, resulting in the knowledge that is both clinical and experiential. 11 This knowledge positions the patient as an expert by experience, which can be complementary to traditional knowledge structures in healthcare in which the clinician is the sole source of expertize. 11 By acknowledging this additional source of expertize, PPIE in health research positions patients and members of the public as actors undertaking or contributing to research, rather than simply as its recipients or beneficiaries. 12  Values and Principle's Framework for best practice in PPIE. 12 Commonly PPIE in health research takes place in highly regulated systems and environments, within stringent timelines. 14 Traditional approaches to PPIE in healthcare include consultations, PPIE in health-specific interest groups, lay membership on trust boards and PPIE committees, such as 'Patient Participation Groups' (PPGs). 4 Relying on these methods can limit patient/public representation and statutory bodies controlling the nature and level of PPIE, contrary to the core concept of carrying out research 'with' patients and members of the public. 4,12 Recognizing these limitations, the project described in this paper, in addition to working with PPGs and healthcare professional representatives, utilized social media to set up a PPIE group to advise on the research.
Despite the aforementioned guidance on PPIE, guidance for using specific social media platforms is not comprehensive because different research approaches have different PPIE needs. 15,16 The needs of a study in developing a PPIE strategy can include but are not limited to a need to assess and understand the local context of the proposed study, a need to plan ahead and anticipate future issues, and a need to diversify and ethically support inclusive practice. 17 As part of PPIE strategies to address these needs, members of the public can be involved in many different activities throughout the research cycle. 17 For example, informing research priorities, informing design, ensuring methods are appropriate for the population under study, reviewing and commenting on participant facing literature, defining outcome measures, interpreting data, informing analysis, distributing findings, collaborating on reports, producing summaries and engaging in monitoring and evaluation processes. 17 It has been established that a 'one-size fits all' approach to PPIE is ineffectual, supporting the need for strategies tailored to each study. 18 Reports of using social media to engage the public in research describe advantages, such as creating an established community with active engagement and knowledge exchange, and being able to include a larger, more diverse group of people than traditional faceto-face methods. 19,20 Using a closed Facebook group to facilitate PPIE is an accessible and cost-effective method, and as Facebook is a platform familiar to many patients and researchers, no training is needed regarding its use. 21 Facebook has been used to support userled research, cultivating collaboration between the public and experts, 22 resulting in peer-reviewed publications and producing evidence for a cross-party parliamentary group. 22 A challenge of using social media to support PPIE in research is the risk of excluding those who do not engage with social media, making it an appropriate adjunct to other PPIE methods. 15 1.1 | The current paper This paper discusses the use of a closed Facebook group to facilitate PPIE for the RIsk COmmunication in NHS Health Check (RICO) study. 23

| Patient and public involvement in RICO
A proactive and multifaceted approach to PPIE was key in the development of the protocol for the RICO study, which explored how healthcare practitioners communicated CVD risk and how patients understood their risk during NHS Health Checks (NHSHC; Box 1 and 2). 24  offered to take part in a mock NHSCH and 10 offered to comment on participant facing study information.

| Steering group
The project steering group met four times during the study, with membership including an independent expert chair, two independent academics, a practice nurse who delivered training in NHSHCs, two public/patient representatives and members of the study team.
Having patient steering group members is a common way to ensure their input into project management and involve them in major decisions for the study (e.g., protocol amendments, extension requests). Steering group members received a progress update at each meeting whereby their thoughts and ideas were retrieved regarding challenges experienced by the research team.

| Facebook data
Information provided by Facebook was used to explore the process and impact of the closed Facebook group as a method of PPIE. Group members provided demographics when they joined the group, including their age, gender and location. The research team was also able to see engagement levels at different times across each day of  As this paper discusses the use of a closed Facebook group to facilitate PPIE for the RICO study no ethical approvals were sought.

| Group member demographics
The PPIE closed Facebook group had a total of 289 members (five of these provided no information about their age or gender; Table 1 There were also a small number from outside England: India (n = 3), Canada (n = 1), Iraq (n = 1), the Philippines (n = 1) and Pakistan (n = 1).
Although individuals who were eligible for an NHSHC were preferred F I G U R E 3 Facebook group post requesting feedback from patient and public involvement and engagement group members.  (as stated in the recruitment advertisement, Figure 1), Redmoor

T A B L E 1 Demographics of PPIE group members
Health and the research team did not enforce these criteria when admitting individuals into the closed Facebook group.   In addition to these challenges, a limitation of this approach is the exclusion of those without reliable internet access or who are unfamiliar with social media. However, alongside traditional PPIE methods, these limitations were somewhat mitigated.

| Overall engagement with posts
Finally, the decision not to enforce specific criteria for members of the closed Facebook group (e.g., eligibility for an NHSHC) could have affected the feedback received. It was clear from several comments that some group members were living with cardiovascular health issues, which would preclude them from NHSHC. As discussed previously, people with experience of specific health conditions develop a knowledge and understanding of that condition, which would not be expected of the target population for NHSHC, for whom CVD prevention is the programme target.

| Suggestions for best practice
Reflecting on this experience, suggestions for those seeking to pursue a similar approach include: Boundaries. Set boundaries by ensuring that all members know the role of the research team and that this cannot extend to medical advice.
Flexible working. It is important that the group is monitored at specific times and days, for example, 9:00-17:00 on weekdays, but also with availability outside working hours. This can facilitate smooth communications and prevent confusion.
Timing of posts. PPIE group engagement was highest between the hours of 19:00 and 20:00 and posts asking for feedback on specific questions elicited the most likes and comments (e.g., camera position). Therefore, our recommendation is that posts be scheduled in the evening and, if possible, a member of the research team be available to respond to comments from group members.

| CONCLUSION
Facebook can provide a platform for successful PPIE in health research with several advantages, particularly when used alongside traditional methods. Using a closed Facebook group to facilitate PPIE offers flexibility that can be beneficial for both research teams and patients and the public who wish to engage in the research process.
This approach allows for wider participation, and in the main requires no training.

AUTHOR CONTRIBUTIONS
Conceptualization, funding acquisition and methodology: Christopher J.