Anwar: Diversity means removing barriers and creating inclusive opportunities

Here we present the last in our series of four blogs, ‘The heart of creating change in research – perspectives of the public’. We asked Anwar Gariban, a member of our Public Advisory Group who supports our Enhancing Cohorts and Smartphones and Wearables work, to tell us why diversity in health data research is important.

Can you tell us why diversity in public involvement and engagement is crucial for developing research?

Despite progress in recognising health disparities (a difference in health outcomes, especially one connected with unfair treatment), the involvement of under-served communities, such as people of low socioeconomic background (a measure of an individual or family’s economic and social position) and minority ethnic groups, remains low. This lack of representation may mean that researchers fail to address the needs of diverse communities. 

Developing inclusive involvement and engagement opportunities

At the BHF Data Science Centre, we are developing inclusive opportunities for a broad range of voices to shape and strengthen health data research. This is an important and necessary approach that must be embedded at an early stage of public involvement.

We understand that, for some communities, they may experience different health outcomes and may be more likely to develop multiple long term health conditions. Our goal is to understand why these disparities exist and improve outcomes for all patients and the public as a whole.

As a Centre working with large-scale data across the UK, we must incorporate the perspectives of all communities, including those seldom heard. This will ensure our research is reflective of the whole population.

Can you share any examples of how we’ve increased diversity at the Centre?

As a minority involved in health and data research, I have found the Centre to be genuinely inclusive, listen to the views of all and make changes to proposal as appropriate. One example is the Centre’s survey to explore what data patients would be happy to share via smartphone and wearable device that could help researchers spot early signs of cardiac abnormalities. We ensured that people of low socioeconomic backgrounds were included.

The commitment to inclusivity truly reflects the Centre’s ethos of providing a voice for all. – Anwar Gariban

Removing barriers and increasing diversity

We’ve recruited public contributors who represent a diverse range of perspectives to form our public advisory group. They champion diversity and hold researchers to account, ensuring that inclusive and accessible formats are considered when involving and engaging the public.

We must address potential barriers, support our contributors and improve trust to encourage patient and public involvement. Developing inclusive opportunities through fairer recruitment methods, training and wider engagement, and ensuring we actively seek out smaller grassroots communities that might not be engaged with health data research, are just some of the steps we can take to enhance the rich perspectives we already embed across our work.

We know this works. By listening to our public contributors and making improvements, we’ve been able to engage patients and the public that have never been involved with health data research. A participant at our Diabetes Data Science Catalyst Workshop said:

“This is the first time I’ve been involved in anything like this, and I’m blown away by it all, it’s absolutely brilliant, thank you so much” – Diabetes Data Science Catalyst Workshop participant

What’s next?

Our commitment to Equality, Diversity and Inclusion (EDI) is continuously improving, and we’ve embedded a key objective within our Patient and Public Involvement and Engagement (PPIE) strategy to enhance our approach.

By working together with key partners, such as The Public Engagement in Data Research Initiative (PEDRI); we’re committed to improving our mechanisms for public involvement and engagement; by doing so, we hope to recruit more public contributors who represent different communities and engage wider audiences across the UK.

Find out more

Read our recent article and case study to find out more about our approach to PPIE.