A path to equity: Fostering Inclusive Public Engagement in Health Research

Promoting inclusivity and engaging minoritised communities in health research are pivotal steps towards addressing health disparities and promoting equity. By incorporating diverse perspectives and lived experiences, inclusive public engagement endeavours to produce contextually relevant research outcomes that reduce disparities. However, underrepresentation in research and a lack of inclusivity persists, highlighting the need for proactive measures and community-driven approaches to addressing these challenges.

Overcoming Barriers to Inclusivity

To foster inclusive public engagement, it is imperative to confront structural and cultural barriers while addressing socioeconomic challenges. Building trust with minoritised communities is foundational to this endeavour. This can be achieved through promoting a cultural shift that values inclusivity, providing comprehensive training to researchers, and ensuring transparency and accountability by collecting rigorous data on engagement demographics.

Patient and Public Involvement (PPI) in Health Research is essential for ensuring research priorities, methodologies, and outcomes are relevant to the communities they aim to serve. Ethnic representation in PPI initiatives enhances diversity, improves cultural relevance, and fosters trust between researchers and communities. The inclusion of racially minoritised groups in PPI is crucial for several reasons.

Cultural Sensitivity: Involving racially minoritised communities in PPI allows researchers to gain insights into cultural nuances and tailor research approaches accordingly.

Improved Access and Engagement: PPI helps identify and address barriers these communities face in accessing healthcare services or participating in research, thereby increasing participation and engagement.

Addressing Health Disparities: PPI enables researchers to understand and address the underlying causes of health disparities experienced by racially minoritsed communities.

Enhanced Trust and Collaboration: Actively involving these communities in PPI initiatives builds trust, establishes meaningful partnerships, and empowers communities to have a voice in research decisions.

Relevance and Impact: Including these communities in PPI ensures that research priorities and outcomes align with their needs and preferences, making research findings more relevant.

Let's delve into a real-world example that illustrates the transformative power of inclusive public involvement in primary care research:

Case Study: Improving Communication about Menopause for Women from South Asian Backgrounds

Our NIHR School for Primary Care-funded research aims to improve communication about menopause for South Asian women in England. This qualitative study incorporates insights from South Asian women nationwide, with the research design refined through collaboration with PPI contributors. We have involved two South Asian women as PPI contributors in our research team and have formed a PPI group to guide the research. This is to ensure sustained engagement and alignment with their perspectives and those of other South Asian women. The research was developed with South Asian women who told us that focusing on communication about menopause was a research priority. Their initial and continued involvement ensures that the research question and design reflect their perspectives and priorities.

Dissemination

We plan to disseminate the study findings through a workshop attended by health professionals and South Asian women, including our PPI contributors. The workshop will include discussions about prioritising key messages from the research and on effectively disseminating findings to South Asian communities and healthcare professionals. The research will also be disseminated to South Asian communities through an animation that will be subtitled and voiced-over in various languages.

Outcomes and Impact

Through inclusive PPI efforts, we aim to increase the participation of South Asian women in research, address communication gaps in menopause discussions, and strengthen trust between researchers and communities, fostering future collaborations.

In conclusion, inclusive PPI practices can potentially transform primary care research and address health inequities. Prioritising inclusivity, fostering trust, and amplifying the voices of minoritised communities can lead to more relevant outcomes and more equitable healthcare access for all.

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Dr Yumna Masood is a Qualitative Researcher in the Centre for Evidence Based Medicine.

The study team are Dr Anne-Marie Boylan, Dr Shoba Dawson, Dr Yumna Masood, Neeta Kachhela, Hina Sharma, Dr Stephanie Tierney, Dr Opeyemi Babatunde and Prof Kamal Mahtani.

This study is funded by the NIHR School for Primary Care Research (Grant Reference Number: 681). The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.