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Making Connections: Why Every Voice Matters, Especially in Underserved Communities

Continuing our conversation about the Making Connections event, we chat to Anwar Gariban (Public Contributor) about his reflections on getting involved with this event.

Tell us how you got involved with Agora Digital Centre 

After a period of relaxation following retirement, I stumbled upon patient and public involvement and engagement (PPIE) purely by chance. This newfound experience provided me with a purpose and a sense of achievement. My involvement allows me to share insights with researchers based on my own health conditions and those of my family and friends. It provides me with a unique opportunity to shape health and social care research and its outcomes. 

Having contributed to several studies and built up my PPIE experience, an exciting opportunity arose to join the Agora Digital Centre’s (ADC) Working Group, of which I’ve now been a part of for about two years. The very essence of the ADC lies in creating a space for learning and fostering connections – an avenue where researchers can learn from and collaborate with the public. Organising the ‘Making Connections’ event was a natural next step in achieving this mission. 

Tell us about your involvement in the Making Connections event

I was asked to be a member of the ‘Making Connections’ project team, which involved meeting regularly to plan the event, establish key objectives, and identify the community members we wished to target for maximum impact. My voice was regarded as important for the success of our meetings, which made me feel valued and privileged. For the event, we identified the following aims:

  1. Making Connections: This initiative focused on building long-term relationships with community organisations, especially those representing underserved populations like people with low socioeconomic backgrounds and ethnic minorities. The emphasis was on fostering genuine connections and moving away from the all-too-often transactional interactions that do little to build trust, particularly within these communities.
  2. Inform and Share: Highlighting the ADC’s role in connecting and training researchers, the public, and patients to create health research outcomes that directly impact their communities.
  3. Addressing Disparities: Despite significant progress in PPIE, a critical challenge remains: the lack of involvement from underserved communities in health research. This can lead to research conducted “to and for” these communities instead of “with and by” them. As an organisation, the ADC recognises this gap in representation. Addressing these disparities was a central focus while planning the meeting, as it’s crucial to break down barriers, promote inclusivity and equity in research.

Why do you think the Making Connections event was important? 

The term “hard-to-reach” is too often used interchangeably with “underserved communities,” the former can be misleading. It suggests a lack of willingness on the part of the community to be involved or participate in research when the reality is often quite different. This mischaracterisation can lead researchers and PPIE organisations to unintentionally exclude these very communities. The ADC successfully made connections by purposely targeting underserved local communities via their leaders and influential members. During the event, a collaborative exploration of the communities’ needs took place through open discussions. Their views were actively listened to. The “line” was left open for ongoing communication and further meetings. 

Reaching out to and giving a voice to underserved communities is an imperative if researchers and PPIE organisations wish to improve the health and wellbeing for all. While the ADC is a national organisation, reaching out to local communities was a good starting point. This demonstrates goodwill and the interest ADC takes in its local communities. Having attended the meeting and interacted with delegates, I felt the ADC has laid the foundation stone with local people to build trustworthy relationships. For instance, the ADC demonstrated goodwill by addressing the community’s specific concerns about how minorities have been used in research resulting in suspicions about researchers’ motives to involve them. 

By actively involving local communities in local events, we can acknowledge and address suspicions stemming from past wrongdoings. Reassurance and alleviation of reservations become possible through direct engagement. The ‘Making Connections’ event significantly contributed to achieving this goal. Witnessing the process of connecting with the community and building trust firsthand emphasised the importance of trust in encouraging involvement in health research. Although there is still progress to be made in establishing a strong and lasting relationship, the event demonstrated that the underserved community is willing to engage once trust is established. 

At the event, delegates discussed issues faced by their communities and freely exchanged ideas about how to work together moving forward. For example, one of the delegates extended an invitation to the ADC to discuss PPIE-health research on their community radio show. I believe this positive outcome is because of the inclusive and participatory approach that the ADC adopted at the meeting. 

What are your reflections on the Making Connections event? 

During my time as a patient and public contributor, I’ve had the privilege of interacting with highly skilled individuals who genuinely value my perspectives. However, my collaboration with the ADC has been particularly rewarding. 

At the ADC, collaboration is more than a buzzword—it’s a way of working. The team fosters a spirit of co-production and shared responsibility. Every voice is considered with respect, regardless of background or expertise. 

Organising the ‘Making Connections’ event provided a unique opportunity. It allowed me to engage directly with underserved communities. Through this experience, I gained a deeper understanding of their needs. Contrary to common perceptions that these communities are hard-to-reach or challenging, I discovered that a little effort could bridge the gap. Without intentionally reaching out to these communities, health research risks being skewed and contributing to health inequalities and disparities. 

The event reinforced my belief in the vital role of diversity and inclusivity in health research. Every voice is important, no matter how difficult it may be. Witnessing the open communication and collaborative spirit during the event was truly inspiring. The relaxed atmosphere, infused with good humour and camaraderie, made it enjoyable for both organisers and delegates. We learned from one another, laying the groundwork for trust and hopefully lasting relationships. 

In summary, the commitment to reaching out to the underserved communities is essential. By doing so, we not only address health disparities but also contribute to a stronger, more equitable healthcare system.  

Are you interested in getting involved or understanding PPIE? Explore ADC’s website to learn more about their work and upcoming events or visit People in research for PPIE opportunities at Home – People in Research 

Do you want to find out more about patient and public involvement and engagement? 

In our new online course ‘Nothing about us without us,’ you can learn about what makes good patient and public involvement and engagement in health and social care research. Register your place on the course today!