Health Equity Advocate Blog Post

Dr Rossby Awadzi

NHS Medical Doctor and Founder,

Sickle Cell Education Series.

He is one of the largest patient education initiatives in sickle cell disease globally. Through GetMedical, he works with NHS trusts, charities, national institutions, and industry partners to develop culturally relevant healthcare education, community engagement initiatives, and patient-centred programmes that improve access to knowledge, care, and participation in clinical research.

Area of Equity Focus:

Health equity, patient engagement, culturally responsive medical education, and equitable participation in research.

Why This Matters to Me.

Working both clinically and within communities has shown me that many of the barriers patients face are not purely medical. They often arise from how healthcare systems communicate, educate, and engage. When information is inaccessible, culturally disconnected, or delivered in ways that feel unfamiliar, patients are left navigating complex decisions without the clarity or confidence they need. My work focuses on addressing these gaps by building bridges between clinical knowledge and the communities' healthcare systems that aim to serve.

The Equity Issue

Healthcare often measures access in terms of appointments, tests, and treatments. Far less often do we ask a simpler question: “Did the patient actually understand what happened next?

Patients frequently encounter complex medical information, research opportunities, or screening programmes without communication that feels culturally relevant, accessible, or grounded in their lived experiences. 

These challenges are particularly visible in conditions that disproportionately affect underserved communities, such as sickle cell disease, but the underlying issue extends across many areas of medicine. Whether discussing genetic screening, clinical research, preventive health programmes, or chronic disease management, the ability of patients to engage meaningfully with healthcare systems is strongly shaped by how information is communicated.

Healthcare communication often assumes a uniform audience. Educational materials may be clinically accurate yet fail to resonate with communities whose cultural context, health literacy needs, or lived experiences differ from those assumed in traditional healthcare messaging. As a result, some communities become labelled as “hard to reach” when, in reality, they are simply underserved. 

An important dimension often overlooked in these conversations is the role of family and community in decision-making. For many people, health choices are rarely made in isolation. They are shaped by wider family networks, cultural expectations, and shared understanding within communities. When these influences are not acknowledged, even well-intentioned communication can feel incomplete. 

This becomes particularly visible when cultural understanding enters the consultation room. As a doctor originally from Ghana, I often notice that certain consultations take on a different rhythm. Patients may ask more questions, seek clarification beyond the immediate clinical issue, or open conversations about family and community perspectives on health. The interaction becomes less transactional and more educational. These moments highlight how cultural familiarity can create space for dialogue that might otherwise never happen. 

What’s Really Driving the Inequity?

When healthcare systems discuss equity, the focus often falls on infrastructure, policy, and treatment availability. These factors are important, but a quieter driver of inequity sits beneath them: the way knowledge flows between institutions and the communities they serve.

Medical knowledge is typically generated within academic or clinical environments and delivered outward through systems that prioritise accuracy and efficiency. Yet the question of how that information is received, interpreted, and trusted by different communities often receives far less attention. Patients may receive information that is technically correct but difficult to translate into everyday decisions.

This gap becomes particularly visible in areas such as clinical research and genetic screening. Participation in research depends not only on eligibility but also on trust, understanding, and the confidence individuals feel in the institutions inviting them to participate. When communication fails to connect meaningfully with communities, representation in research suffers, which in turn limits the evidence base for those very populations.

Over time, this dynamic can become self-reinforcing. Limited representation contributes to treatments and research that do not fully reflect diverse patient experiences. Communities observe these gaps and develop understandable scepticism towards healthcare institutions. That scepticism can influence relationships between clinicians and patients, shape engagement with services, and further limit the knowledge base needed to improve care.

Yet communities rarely remain passive in the face of these gaps. Many develop their own networks of knowledge, support, and advocacy. The sickle cell community is a powerful example of this. Patients and families have built vibrant communities that share experiences, exchange information, and advocate for better care.

In my own work engaging with patients, clinicians, researchers, and industry partners across multiple organisations, I have repeatedly seen how quickly trust and participation grow when communication moves beyond information delivery and becomes genuine dialogue.

Through my work, I have seen how bringing together clinical knowledge, cultural understanding, patient voices, and engaging education can begin to shift this dynamic. Initiatives such as the Sickle Cell Education Series were developed with this intention, creating open educational spaces where clinicians, researchers, patients, and industry partners can engage in genuine dialogue.

These workshops have grown to become some of the largest and most engaged patient education forums in the world in this field. Increasingly, hospital trusts, national institutions, and industry organisations have begun collaborating with us to develop educational materials and engagement initiatives that reflect these same principles.

What this demonstrates is that communities are not resistant to healthcare engagement. When information is culturally relevant, accessible, and delivered with respect for lived experience, people respond with remarkable enthusiasm.

Implications for Health, Research, or Care.

When patients are genuinely engaged and supported to understand their health, the impact extends well beyond the consultation room. 

Trust grows when individuals feel that healthcare systems recognise their perspectives and communicate in ways that resonate with their lived experiences. Patients who feel informed and respected are more likely to engage with preventive services, screening programmes, and long-term care. 

There are also important implications for clinical research. Diverse participation in clinical trials is essential to ensure that new therapies are safe and effective across populations. However, improving representation in research cannot be achieved through recruitment strategies alone. It requires sustained relationships with communities and meaningful investment in education and dialogue. 

Collaborations between healthcare organisations, community groups, and industry partners are beginning to demonstrate what becomes possible when engagement is treated as a central part of healthcare rather than an afterthought. Educational workshops, open discussions, and culturally informed outreach initiatives can help connect patients with research opportunities while strengthening trust in healthcare systems more broadly. 

Ultimately, equitable healthcare systems are not defined only by the treatments they deliver, but by the relationships they build.

What Needs to Change?

There is also a deeper question about how healthcare defines success.

Traditionally, medicine has focused on moving patients from a negative state to a positive one. Illness is identified, treatment is delivered, and recovery becomes the goal. While this model has driven remarkable progress, it also reveals a limitation. Healthcare systems are highly effective at treating illness, yet far less consistent at supporting individuals to maintain health once they reach it or helping them move from a neutral state towards a positive one.

This is where fragmentation often begins to appear. Responsibility for health becomes distributed across clinicians, services, public health initiatives, and individuals themselves. Without clear, culturally meaningful communication, patients are often left navigating these expectations alone.

The reality is that the foundations of long-term health rarely sit solely within hospitals or clinics. Lifestyle habits, family influence, cultural beliefs, and community environments play a profound role in shaping health outcomes. These factors determine how advice is understood, whether recommendations are followed, and how individuals engage with healthcare systems over time.

If medicine has mastered the art of moving people from illness back to stability, the next challenge for healthcare is learning how to help individuals and communities move from stability to thriving.

A Question for the Sector

If communities are already actively seeking health knowledge and building their own networks of support, is the real question how we reach them, or whether healthcare is prepared to meet them where they already are?