Diversity in Patient and Public Involvement as a Vehicle to Address Disparities in Pressure Injury Prevention

Involving diverse groups of patients and the public in research decisions is central to addressing the disparities that exist in healthcare. Bridging the gap between research and practice requires generalisability and relevance of research findings to the wider population. However, not all research has included representative populations, which raises the question of whether diverse patient and public involvement (PPI) practices could make research and healthcare more inclusive. Research exploring the early identification of pressure injuries (PIs) has not always included diverse populations, which has highlighted critical gaps in current PI prevention practices for people with dark skin tones. This commentary places a spotlight on how researchers can strive for greater representation when establishing PPI panels, suggesting that diversity in PPI may be a vehicle for addressing disparities in healthcare, particularly for PI prevention.

1. Defining Patient and Public Involvement

When patients and the public share their experiences and perspectives with researchers to have an active involvement in decision‐making during the research cycle, this is considered PPI. This level of involvement is not the same as collecting and analysing patient data for the purposes of answering a research question or achieving objectives—this is patient participation, which is not PPI. Ultimately, PPI ensures that decisions are based on the needs, preferences, and experiences of patients, caregivers, or service users, allowing them to contribute meaningfully throughout the research cycle and to have their perspectives listened to and acted upon. The research cycle extends across seven stages (Pearson et al. 2024) and embedding PPI into the first stage involves engaging with patients and members of the public to identify and prioritise a topic of importance, enabling patients and members of the public to meaningfully shape the future direction of research. Thus, PPI fosters a collaborative partnership between researchers and individuals with lived experience of healthcare challenges, supporting researchers to gain profound insights into the conditions being studied. This collaborative approach empowers the co‐creation of effective solutions to real‐world healthcare challenges, ultimately contributing to enhanced healthcare outcomes.

2. The Importance of Diversity in Patient and Public Involvement

Researchers have a responsibility to incorporate diverse voices in PPI, aiming to ground contributions in varied perspectives, experiences, and needs, ultimately addressing healthcare disparities. Equity and inclusion are indeed fundamental values and guiding principles of PPI within and across national and international organisations (Baines and Regan de Bere 2018). By involving PPI contributors from diverse backgrounds and experiences, we can better ensure that studies are designed with person‐centred care, inclusivity, and patient safety in mind (Ocloo et al. 2021). While increasing diversity may not fully capture the experiences of all individuals living with a particular condition, it mitigates the risk of overlooking the needs and perspectives of people within diverse societies. The risk of underrepresentation of diverse people in PPI is that it can lead to the co‐production of research outputs that are neither relevant nor optimally valuable to the full range of healthcare consumers, ultimately diminishing the true value of integrating PPI in research.

Lack of representation in research poses risks to patient safety, often necessitating retrospective studies to address preventable issues. As the end goal of research is the implementation of study findings into practice, striving for greater representation in research means that research outputs are more likely to be relevant to the wider population, which in turn ensures person‐centred care is embedded into clinical practice for all. Person‐centeredness focuses on building relationships with patients, their significant others, and the healthcare team, underpinned by values of respect, self‐determination, mutual respect and understanding, and enabled by a culture of empowerment and continuous practice development (McCormack et al. 2021). This highlights the importance of embedding representative person‐centred care from the very beginning of the research process through PPI. The question, however, is how to enhance diversity in PPI and how to evaluate it to ensure that contributions reflect a broad spectrum of voices.

A key strategy to facilitate greater diversity in PPI is for researchers to identify and remove existing barriers to PPI throughout the research cycle. A study by Hatch et al. (2024) exemplifies the strategies for more effective and inclusive PPI practices by using PPI surveys and focus groups with members of the public and university staff to identify barriers and enablers. Engaging with local communities to broaden outreach, understanding the needs and expectations of people interested in getting involved in research activities, and the establishment of a supportive infrastructure that provides reimbursement to recognise the value of PPI were key enablers to achieving diversity (Hatch et al. 2024). The need to consider the expansion of small PPI groups was emphasised, to provide a wider representation of community members and to reduce the burden on the same PPI contributors over time (Hatch et al. 2024). Additionally, including a larger, more diverse group helps to eliminate power imbalances that exist in PPI, alongside reframing language to be more accessible, simple, and inclusive (Dews et al. 2024). Therefore, early engagement with local communities using accessible outreach materials and establishing a supportive infrastructure that recognises contributions and minimises the burden on those involved are key enablers to establishing more inclusive and diverse PPI practices.

When it comes to evaluating diversity in PPI, researchers have explored the use of both equality impact assessments (Hatch et al. 2024) and questionnaires to capture the demographic data of people involved in PPI activities (Keane et al. 2023). In the absence of a standardised approach, researchers should consider developing strategies to evaluate diversity in PPI, potentially involving self‐evaluation or reflection exercises with PPI panels. This collaborative approach could help identify effective methods for enhancing representation and expanding outreach to a broader community of individuals affected by the condition under study.

3. The Need for Diversity in Pressure Injury Research

Embedding diverse representation in PPI from the outset could be the key to closing gaps in PI research. True inclusivity means that diversity should not be an isolated focus but should be embedded within everyday research and clinical practice, making it the standard rather than the exception (NHS, Health, Research and Authority 2024). One area where we have begun to see this shift is in wound care, particularly pressure injury (PI) care, highlighting the previous gaps and the need for a more inclusive approach to healthcare. While there has been recent work that has started to address health inequities for the prevention and treatment of PIs, there is still a large gap; for example, most papers do not mention skin tone, which is a vital component for the accurate assessment and early identification of PIs. Embracing diversity in research practice, therefore, is essential to advancing equitable healthcare and ensuring comprehensive patient safety.

Ideally, research should not need to retrospectively address gaps for specific populations, as inclusivity should be embedded from the outset to ensure all groups are represented. In work conducted by Oozageer Gunowa et al. (2024a, 2024b) a significant gap in PI research for individuals with dark skin tones was highlighted, emphasising the risks of exclusion and the harm this exclusion can cause to patients. Retrospective research in the field of PI prevention highlights the need for a shift to more inclusive research practices that advance equitable healthcare, ensure patient safety, and ultimately contribute to the prevention of future disparities.

4. Patient and Public Involvement Diversity in Pressure Injury Research as the Driving Force for Change

PI research exemplifies the need for greater diversity in PPI to drive meaningful, equitable improvements in care for all patients (Oozageer Gunowa et al. 2024b). When striving for equity in PI research, the overarching aims and objectives serve as a valuable guide for identifying and engaging relevant individuals in the research development process. As diversity spans across a wide range of differences within society, decisions about which individuals should be involved will change and evolve depending on the research goals. However, it is only when different people are involved from the outset that the research aims and objectives can be tailored to better meet the needs of diverse communities. Prioritising diversity in the first steps of research planning is essential to inform future decisions such as the different types of participants that will be included. Additionally, diversity in PPI may facilitate a wider reach to underserved communities and recruitment strategies to successfully recruit people from culturally diverse backgrounds. In PI research, diversity in PPI practices may serve as a driving force for generating more inclusive research practices, ultimately leading to findings that impact and benefit a broader population affected by PIs.

5. Patient and Public Involvement

A partner with lived experience collaborated on this commentary, contributing their insights to enhance its relevance. They have also provided the following lay summary to improve accessibility and understanding for patients and the wider public.

PPI in research means that patients or members of the public help make decisions about what type of study should be done and how the study can be planned, to make an important difference to the lives of people living with a condition. To ensure that PPI contributors represent a variety of perspectives, they should have different experiences, lives, and opinions to each other, which creates diversity in PPI. Diversity is important as it makes sure that people, for example with a different race or ethnicity, condition, or age, have their voices heard, which gives a more realistic presence of the different people that live in society. In studies about PIs (also known as pressure sores), the people included in these studies have not always been truly representative of our society (Oozageer Gunowa et al. 2024b). This means there are groups of people that have been excluded from decisions about how to prevent PIs based on their needs. Raising awareness about how researchers can ensure research findings are relevant to all people is an important step to improving the relevance of the work we do for preventing PIs for all people that are affected by this problem.

6. Conclusion

Without PPI, research risks losing a truly person‐centred approach, as researchers make decisions in isolation rather than in collaboration with those they aim to serve. For PPI to reflect the needs and preferences of the different people living in society, diversity must be a priority when establishing PPI panels. Identifying barriers and enablers to PPI will facilitate greater engagement and inclusive PPI practices. Striving for greater representation in PPI holds important implications for both research and clinical practice, as research outputs have a direct impact on the care, treatment, and services provided in healthcare on a global scale.

The implications of greater diversity in PPI are multifaceted, as it enhances the quality, relevance, and inclusivity of research, facilitating greater access to under‐researched communities and ensuring that the issues addressed are aligned with real‐world needs. From a clinical practice perspective, this embodies an inclusive person‐centred approach, as incorporating diverse perspectives into healthcare decisions is likely to meet the needs of individuals from various backgrounds, thereby fostering greater patient trust and acceptance of a more equitable healthcare system. Moving forward, partnering with relevant individuals in the research development process through PPI may be the missing piece needed to foster more inclusive research, ensuring the involvement of diverse populations and generating outcomes with a broader impact on society.

Conflicts of Interest

The authors declare no conflicts of interest.

Data Availability Statement

The authors have nothing to report.