Abstract:Objective: to conduct a Patient and Public Involvement (PPI) focus group session. To help inform the design of a clinical pharmacy intervention in primary care for patients after a coronary event. Methods: this study followed a public involvement method. Community members of the public and community engaged research patients who had experienced myocardial infarction where invited to actively take part in a focus group discussion. This is to share past experiences and provide input and advice into the design of… Show more
“…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.…”
Section: Introductionmentioning
confidence: 99%
“…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 …”
Section: Introductionmentioning
confidence: 99%
“… 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 …”
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.
“…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.…”
Section: Introductionmentioning
confidence: 99%
“…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 …”
Section: Introductionmentioning
confidence: 99%
“… 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 …”
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.
“…In addition, 12 published manuscripts were identified from a specific citation search; these were included as a compendium to the original record identified in the search (ie, full-text papers to support conference abstracts). In total, 35 records 62 , 63 , 67 , 68 , 69 , 70 , 71 , 72 , 73 , 74 , 75 , 76 , 77 , 78 , 79 , 80 , 81 , 82 , 83 , 84 , 85 , 86 , 87 , 88 , 89 , 90 , 91 , 92 , 93 , 94 , 95 , 96 , 97 , 98 were included in the final review. Figure 1 Preferred Reporting Items for Systematic Reviews and Meta-Analyses ( PRISMA) 2020 flow diagram.…”
Section: Resultsmentioning
confidence: 99%
“…The 35 records represent data from 474 community and patient partners 62 , 63 , 67 , 68 , 70 , 71 , 73 , 74 , 75 , 76 , 77 , 78 , 80 , 81 , 82 , 83 , 84 , 85 , 86 , 87 , 89 , 90 , 91 , 96 , 97 , 98 , 99 who completed studies, including a total of 417 (88%) female partners. Of the 35 papers, the majority originated in the US (n = 16; 46%), 68 , 71 , 72 , 73 , 76 , 77 , 79 , 81 , 83 , 84 , 87 , 90 , 93 , 94 , 95 , 96 Canada ( n = 7; 20%), 62 , 63 , 69 , 70 , 74 , 75 , 98 and the UK (n = 6; 17%).…”
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.
