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From festivals to places of worship: Bringing research to South Asian communities

  • 07 October 2024
  • 6 min read

Hear how our Agile Research Delivery teams are working with community leaders and leveraging community networks to engage South Asian communities in research in a range of out-of-hospital settings.

Addressing health disparities through research

South Asian populations in the UK face some of the highest rates of heart disease, diabetes, and overall poor health. The Genes & Health study, a population-based DNA sequencing and medical records initiative, aims to address these disparities by investigating genetic links among British-Bangladeshi and British-Pakistani communities. 

Launched in East London in 2015, the study is one of the largest community-based genetics studies. It seeks to recruit 100,000 individuals of Bangladeshi and Pakistani origin. When the study's recruitment efforts in East London reached saturation point, the study was expanded to Bradford and then to Greater Manchester.

The role of Agile Research Delivery teams

Agile Research Delivery teams in both these regions provided crucial support to deliver this important study. Matron Jo Henry is the Agile Research Delivery Team Lead for the Greater Manchester region and member of the national Agile Delivery Team Leadership Group. She explains how her team responded to the challenges presented by the Genes & Health study in her region:  

“The Agile Research Delivery teams were established, post-pandemic, to pioneer new ways of delivering research beyond the hospital and finding non-traditional approaches to bring research into new and diverse settings,” Jo explains. 

“As well as conducting the research activities with participants, we can add real value by driving community engagement to support the recruitment strategies. For the Genes and Health study we undertook extensive engagement activities, connecting with community leaders, Imams, South Asian organisations, charities, and attending various community events.”
Jo Henry, Agile Research Delivery Team Lead

“Working with the Manchester University NHS Foundation Trust (MFT), we provided a wide range of support and services, from publicising our presence, explaining the study to participants, consenting participants, collecting saliva samples, and administering a health questionnaire. This was all collated for the MFT team who posted all the samples and paperwork to the team leading the study in East London."

Harnessing influencer power

Engaging the South Asian communities required a strategic approach. The Agile Team began by collaborating with local community leaders, including the local hospital Imam and a Pakistani MP who served as advocates for the study. 

"Our biggest challenge is gaining access to the communities we aim to reach,” says Jo. “Building trust is essential; without it, we will fail. Engaging with community leaders is crucial to achieving this."

Understanding cultural and traditional contexts was also essential in building trust and relationships. The team worked collaboratively with Imam’s to bring the research opportunity to high-traffic community events such as Friday prayer sessions, an approach which delivered results. 

“Our first recruitment event at a local mosque was hugely successful,” Jo reveals. “This was largely thanks to the head Imam who helped us plan the sessions. He had taken us on a pre-visit to the hospital mosque to help us understand the setup and expectations, and a pre-visit to the community mosque so we could plan how the session would run. During the Friday prayer, the Principal Investigator from MFT and the Imam gave a talk explaining the study and encouraged sign-ups, which was crucial given the Imam’s influence. As a result, we recruited 86 people in just over one hour. The Friday prayer meeting is the largest of the week and can attract up to 800 attendees, depending on the mosque's size, so there is a lot of potential.”

The Imam's support didn't stop there; he connected the Agile Team with influential people, including the Greater Manchester Muslim Chaplaincy Group. This expanded their network and led to referrals to other mosques, significantly boosting recruitment efforts.

10 members of the Genes & Health study research team stood outside

Taking the research out into the community

The Agile Team also looked beyond the prayer sessions to other opportunities within the community such as events like the Manchester Mega Mela festival and the Halal Food Festival. This enabled them to make valuable connections and grow their network further.

“We hadn’t used this approach before,” explains Jo. “However, we felt that it offered a good opportunity to talk to people. We paid a small amount for a stall for the weekend, and our gamble paid off.” 

Despite initial apprehensions and hesitancy towards treatments and vaccines in South Asian communities, the Agile Team found most people eager to participate once trust was established.

“The approach worked,” Jo reveals. “We had 75 people sign up over the first weekend, and we made valuable connections with other community groups. This led to invitations to more events and charity organisations - our network of South Asian contacts expands each time we attend an event."

The Agile Team’s proactive recruitment strategy delivered remarkable results overall. A quick look at the stats speaks volumes. Says Jo:

“For the time period where we were leading community recruitment - a period of about fifteen months - total recruitment was 1032 participants. 57 of those participants were enrolled in the hospital environment by the MFT team, compared to 975 enrolled in the community via our collaborative work.”
Jo Henry, Agile Research Delivery Team Lead

Early outcomes: Closing the feedback loop to encourage future engagement

The Genes & Health study is already yielding positive outcomes that inform clinical practice. For example, research accessing the study's samples found that Clopidogrel, a drug prescribed to prevent heart attacks, does not metabolise effectively in over 50% of South Asian people. Until now, two-thirds of South Asians who suffer heart attacks are prescribed this drug. This research is expected to lead to more genetic testing by doctors to ensure clopidogrel is effective for patients. Such findings underscore the importance of personalised medicine and highlight the long-term benefits of the study.

Jo explains that the team is returning to one of the first mosques they recruited from to present the study results. “This is really important as it adds credibility and closes the loop, showing participants that their contributions are valued and significant. We're committed to ensuring they feel appreciated and understand the impact of their involvement. This will help to encourage study participation in future research within this community."

Reflections and recommendations for sponsors

The Agile Research Delivery teams have consistently overcome challenges, demonstrating their capacity to adapt and thrive in diverse settings. Their efforts in engaging under-represented communities have expanded the reach of the Genes & Health study and also provided a template for future research endeavours.

Reflecting on the success of the study, Jo advises sponsors: 

“Talk to your Chief Investigators and Principal Investigators about clinical pathways, but don't stop there. Engage with the people on the ground – the nurses, research practitioners, and clinical trial administrators who interact with patients daily. They know the realities of the settings. Listen to the frontline workers – they have valuable insights.”
Jo Henry, Agile Research Delivery Team Lead

She adds: "If you want treatments and drugs that work in the real world, you need to conduct your research in the real world. Be open to change and embrace flexibility. Don't be afraid to try something new. Patient safety is crucial, but we won't make progress by sticking to old methods. Start small – maybe with screenings or parts of the protocol delivered outside the hospital."

The Genes & Health study, supported by Agile Research Delivery teams, has shown the impact of bringing research directly into South Asian communities. This approach helps address health disparities and paves the way for more inclusive and effective healthcare solutions.


The Genes & Health study has been supported by Agile Research Delivery teams covering Greater Manchester, Yorkshire and Humber and North Thames.


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