Patient and Public Involvement in Dermatology Research: A Review

Abstract

Patient and public involvement (PPI) in research is defined as research being carried out ‘with’ or ‘by’ members of the public, patients, and carers, on both an individual and a group level, rather than simply ‘about’, or ‘for’ them. Within dermatology, PPI is increasingly recognised as a vital component of research as it helps to ensure that research remains relevant to the populations we intend to serve. Dermatology scholarship, with its rich psychosocial implications due to the stigma, physical disability, and mental health burdens these conditions may incur, is in a unique position to benefit from PPI to unlock previously inaccessible patient lived experiences or therapeutic consequences. Throughout the rapid growth of PPI, it has been infused throughout the research lifecycle, from design to dissemination and beyond. After first explaining the principles of PPI, we examine the existing evidence base at each research stage to explore whether our specialty has effectively harnessed this approach and to identify any subsequent impact of PPI. Finally, we scrutinise the challenges faced by those implementing PPI in dermatology research.

Patient engagement with the BJD: encouraging the patient voice and readership

“…Including patients and their representatives in the research process is increasingly being used within scientific practice with the concept of incorporating target users with ‘patient and public involvement’ (PPI), for example via the National Institute for Health and Care Research ‘INVOLVE’ framework 3,6 . The BJD has highlighted the importance of PPI and its relevance to dermatology practice in our new podcast ‘ BJD talks’, 7 raising awareness of the work being carried out by the journal.…”

“…The BJD publishes leading scientific research from across the world, and the accessibility and real‐world impact of this work can be increased with involvement from patients. Following on from previous editorials, 1,2 we have successfully maintained our partnership with patients to ensure that what we publish has a real‐world impact 3 . Our patient associate editors have first‐hand experience of living with a skin condition, and were recruited in a collaborative approach to champion patient involvement in the journal 3 .…”

“…Including patients and their representatives in the research process is increasingly being used within scientific practice with the concept of incorporating target users with 'patient and public involvement' (PPI), for example via the National Institute for Health and Care Research 'INVOLVE' framework. 3,6 The BJD has highlighted the importance of PPI and its relevance to dermatology practice in our new podcast 'BJD talks', 7 raising awareness of the work being carried out by the journal. Giving patients a role in contributing to the direction of future research might generate patient advocacy by providing patients with an opportunity to share their views on current dermatology practice, allowing them to articulate their opinions on novel topics, facilitating their calls for further research into potentially marginalized areas, and allowing scope to express any desires for future practice.…”

“…Following on from previous editorials, 1,2 we have successfully maintained our partnership with patients to ensure that what we publish has a real-world impact. 3 Our patient associate editors have first-hand experience of living with a skin condition, and were recruited in a collaborative approach to champion patient involvement in the journal. 3 With the recent appointment of Olivia Hughes, the BJD is proud to have two patient associate editors with embedded links to skin-related patient societies and networks.…”

Measuring the Impact of Patient Engagement in Health Research: An Exploratory Study Using Multiple Survey Tools

“…Patient engagement (PE), has been defined as “active, meaningful and collaborative interaction between patients and researchers across all stages where decision-making is guided by patients’ contributions as partners recognizing their specific experiences, values, and expertise”. 1 Evidence supports PE as a way to improve research conduct including to improve the research question 2–5 ; study design 6 , 7 ; readability of study materials 5 ; choice of study outcomes 4 ; credibility of results (higher rates of enrollment and retention) 4 , 6 , 8–11 ; interpretation and communication of results 3 , 10 , 11 ; and influence on future research topics. 12 However, there is limited evidence of the influence of PE at each research stage and critical task in the context of qualitative research from the perspective of multiple stakeholders.…”