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Representing your community: Engaging with ethnic minority communities

In January 2021, we hosted a three-day online workshop in collaboration with Breaking Down Barriers that focused on how patient groups can improve their engagement with ethnic minority groups to better serve their rare communities. The goal of the workshop was to give attendees some tangible strategies to help improve their engagement and outreach so that they could feel more confident in expanding their community.

Having a rare disease is often a very isolating experience, and can be even more so for those belonging to marginalized communities. We felt this workshop was a way for us to begin to address how patient groups can help to relieve this isolation by supporting those who may have never been engaged with previously.


Day one focused on adding context to the whole workshop. The aim was to understand how to approach the topic of diversity and engagement to later aid in peer discussions.

The day saw discussions around the correct use of language, how that language has changed over the years, introspection on our own assumptions and a presentation on the idea of privilege and how we can use it as a lens to understand the challenges others face. We were given some context on why diversity is important in rare communities and patient organisations and why patient groups should be actively engaging and trying to make their communities and organisations more diverse.

The day was rounded off by hearing the perspectives of individuals who are from minority backgrounds as well as from those who live with (or in close proximity to) rare disease in order to show attendees some examples of real-life experiences.

Day two focused on how patient groups can improve their outreach and engagement efforts. We discussed how they can find an approach that fits their community and capacity as an organisation.

We heard from Muslim chaplain, Romana Kazmi, and Jewish chaplain, Michele Massing. They put forward their expertise on how different individuals from different cultures may process a diagnosis or genetic information. They closed their presentation by sharing how such individuals can best be reached.

We were then joined by Sondra Butterworth, an expert in social prescribing. 

Sondra touched on how utilizing social prescribing can help patient organisations appeal to different sectors of their communities. Asya Choudry from Breaking Down Barriers then took us through her top tips for communication and engagement. The day was rounded off by breakout sessions, in which all attendees were put into groups to discuss how engagement could be improved throughout different working practices, such as recruitment, events, communications, websites and the production of culturally competent workplaces.

The final day of the workshop focused on showcasing examples of organisations that have put theory into practice. We heard case studies from the Cystic Fibrosis Trust, Bardet Biedl Syndrome UK and Sickle Cell Young Stroke Survivors who all discussed the projects they’ve lead or are leading to increase engagement and outreach with diverse communities. We even heard a wonderful talk on providing culturally competent services by Dr Parveen Ali from the University of Sheffield!

11:00am - 1:00pm, Tuesday, 12th January

Kerry Leeson- Beevers, Alstrom Syndrome UK

Day one was jampacked with plenty of talks to get the cogs whirring. The opening talks really set us up for the next two days of discussions and insight.

Our workshop was kicked off by Kerry Leeson-Beevers, Project Lead at Breaking Down Barriers, who asked us to consider the use of language when discussing diversity and ethnic communities. She asked us to reflect on why language is important when framing discussions and being open minded. Kerry also stressed the importance of recognizing our own biases and the presumptions we may make. She gave us an example of such presumptions by asking us to consider photos of different people. She then questioned what thoughts ran through our head when viewing them? This was to show us that everyone has assumptions, whether they be good or bad, and it is our responsibility to overcome these and challenge them so that we can move forward.

Philippa Norman, Projects Coordinator, Findacure

We were then joined by Findacure’s Projects Coordinator, Philippa Norman, who presented on the idea of privilege as something we all have to varying degrees and must be aware of when approaching other people and trying to understand their experiences.

Philippa used the following definition of privilege:

“Privilege (as something that) describes benefits that belong to people because they fit into a specific social group, or have certain dimensions to their identity.”

She stressed that privilege needs to be understood and recognized in order to understand the challenges and experiences of different people. It is integral to fostering inclusion. Philippa also stressed the relevance of this for patient groups, as they cannot integrate their communities without properly understanding the different challenges they may face or needs they may have. Attendees were then split into breakout rooms to discuss and reflect on what they had just heard.

Asya Choudry, Alstrom Syndrome UK

Our third speaker of the day was Asya Choudry, Communication and Engagement Manager at Alstrom UK. Asya presented on the importance of diversity in rare communities and patient organisations. She covered the benefits of diversity in enriching an organisation’s perspectives, skills and innovative approaches. She encouraged attendees to consider whether the makeup of their organisation reflected the community they were serving, and if not, to consider what barriers existed to increased participation.

Asya gave us some top tips to begin initiating change, such as carrying out skills audits, altering recruitment practices, taking small steps towards change through websites and communications and having regular reviews to be proactive in considering what does and doesn’t work.

Kez Hayat, Bradford Teaching Hospital

Last but not least, the day was rounded off by Kez Hayat and Ola Fagbohun. Kez and Ola shared their experience of what it’s like to be a member of an ethnic minority community and have a rare disease.

Kez is from a south Asian Muslim background and is a parent of a child with Alstrom Syndrome. He is also Head of Equality, Diversity and Inclusion at Bradford Teaching Hospital, and offers a very interesting perspective on the debates surrounding engagement and inclusion.

Kez spoke about the challenges he faced explaining the nature of his son’s genetic diagnosis to his parents, who found it difficult to believe that it could be due to his marriage to his first cousin. On top of this, his family faced challenges in finding genetic counsellors who could communicate in a way in which he understood and knew where he was coming from. For Kez, breaking down cultural and religious barriers was a huge part of the process. It wasn’t until he met an Asian genetic counsellor that he was able to invite them to explain what was happening to his family.

Kez explained how he faced a lot of the common challenges that rare disease patients and families face along the diagnostic odyssey. Sadly, he often faced a lot of challenges on top of that to do with cultural and religious understanding of the condition and genetics, too.

Kez linked the health inequalities faced by many communities in rare diseases during Covid-19 to that of minority communities. He stressed the importance of disseminating clear and factual information targeted at the communities you are trying to reach. By doing so, you’ll build trust and engagement instead of circulating fake news and instilling distrust.

Ola Fagbohun

After Kez’ insightful presentation, we were joined by Ola Fagbohun, a creative health and wellness guide, member of the Findacure Patient Engagement Committee and black individual living with Desmoid Tumours.

Ola described her experience of being diagnosed and the need she felt to find anyone with her condition, rather than anyone who specifically looked like her. It wasn’t until she met another black person with her condition about three or four years later that she felt something had been missing in her journey all along and that she had found the missing piece. Ola described the challenges she faced trying to communicate her diagnosis to her family in Nigeria, and the difficulty of trying to communicate that it wasn’t as bad as they perceived.

Ola wanted to see more representation in the rare disease world of people who looked like her, so she reached out to RDUK and asked to be a part of their rare disease day campaign. She was adamant to get more representation of diverse individuals to make the community feel more inclusive and representative. Ola described how someone had reached out to her after seeing the photo and was surprised ‘because she didn’t think any other black people actually had the condition.’ Ola highlighted to us all the importance of representation in the rare community. We need to reflect the community we serve in order to drive engagement and foster inclusion.


11:00am - 1:00pm, Wednesday 13th January

Romana Kazmi, GOSH

Day two of the workshop focused on how patient organisations can begin to improve their outreach and engagement efforts in order to diversify their communities and foster inclusion.

The session focused on practical, actionable strategies and tips that could be put into regular practice and built into organizational strategy. The session was kicked off by Muslim chaplain, Romana Kazmi, who took us through her work at GOSH. Romana liaises with parents and medical staff to help them find common ground and answer any reservations on how their faith may fit in with the genetic information or medical interventions.

Romana talked through some of the issues that she helps families deal with, such as understanding how dietary requirements or end of life care may fit with their faith and how she helps them work through these challenges. Romana emphasized how the role of a chaplain is an asset to medical teams, as they help to bridge the gap and improve communication and understanding. She also highlighted that although help is always offered, some may choose not to take it. It is crucial to understand the personal choices of others, as everyone is guided by different motivations and beliefs.

Michele Massing, GOSH

To continue the theme, we were joined by Michele Massing, a Jewish volunteer chaplain at GOSH. Michele described the support she gives to the Jewish community and families with things, such as signposting to resources and services that can help or even just by being there to chat about chicken soup or where to get good kosher food.

Michele highlighted the importance of proper signposting to make families feel supported and understood. She noted that by referring Jewish families to Jewish places of support, they did not feel like they had to explain themselves or any requirements they had due to faith or culture. Cultural competence was key in making them feel heard and supported. Throughout her presentation, Michele highlighted the importance of a listening ear over all else and stressed that sometimes just being there for a chat is the most important thing.

Sondra Butterworth, RareQoL

Next up, Sondra Butterworth, Founder and Director of RareQoL, spoke to us about how patient groups can use different perceptions of quality of life to understand their communities and drive social prescribing initiatives.

Sondra invited us to consider the intersectionality between a rare diagnosis, ethnicity, socio-economic status, culture, disability and religion to help better understand that every individual experiences a different rare journey, needs and priorities. Sondra emphasized that everyone is guided by different things, and therefore, everyone deals with their rare journeys differently. This should always be kept in mind by patient organisations and advocates!

Sondra also introduced us to the idea of social prescribing, which is when you provide social support based on someone’s needs. Social prescribing can help people with their health just as much as a physical therapy or medication.

Sondra highlighted the importance of listening to what the community needs in order for social prescribing to be successful in meeting them. She confirmed that listening and understanding is at the heart of social prescribing.

Sondra concluded her presentation by stressing that quality of life is perceived differently by everyone. It has to be understood, that for many, quality of life encompasses a person’s spiritual, cultural and religious views as well as their physical and emotional wellbeing.

Asya Choudry, Breaking Down Barriers

Our set of talks on day two was rounded up by Asya Choudry, Community and Engagement Manager at Alstrom Syndrome UK. Asya not only took us through her top tips for communication and engagement, but also inspected the challenges and opportunities associated with a reliance on translation services alone to make organisations more open.

Asya highlighted that providing translated materials alone is no quick fix to attract diverse communities to patient organisations. She emphasized the need to identify demand for services before providing them to ensure that they have the intended response.

Asya also emphasized other ways that organisations could adapt their health communications, such as through ensuring that all videos are subtitled, using diverse and representative photos on websites and in communications, recognizing cultural dates and festivities or creating community champion positions.


11:00am - 1:00pm, Thursday, 14th January

Becky Kilgariff, The CF Trust

On day three, we dedicated the session to case studies from patient organisations to hear what they have done to increase their engagement and foster inclusivity.

The first speaker of the day was Becky Kilgariff, who spoke about the CF Trust and Breaking Down Barriers project. The aim of the project was to understand the needs and experiences of people with Cystic Fibrosis from BAME backgrounds so they could ensure their information and support was accessible, relevant and representative. Becky described how they used clinicians and specialist care centres to reach the intended communities by forming a clinical working group to begin to understand the needs and challenges of different patients from different backgrounds.

At the CF Trust, they also increased monitoring measures across their population and support groups to better understand the community they were serving. Becky emphasized that while looking externally at who was in support groups, they also felt a need to be more introspective. They worked to be more representative in their communications, resources and publications.

During the project, the CF Trust set up a strategy group to ensure that the whole organisation was onboard and willing to make changes, even in small ways. On their social media, the CF Trust now makes sure to mark key religious and cultural events and festivals, including Eid, Diwali, Hannukah and Passover.

Becky emphasized that change cannot always happen fast. It is instead about ‘lots of little steps and looking internally at your structures, staff and recruitment to make sure the organisation itself promotes equality and diversity.’

Tonia Hymers, BBS UK

The second presentation of the day was given by Tonia Hymers, who spoke about the experience at BBS UK in improving engagement from ethnic minority communities.

During their work on the BDB project, BBS UK identified that although 40% off their community was from an ethnic minority background, they were not engaging with them. They quickly realised that this was what they needed to work on.

BBS measured success by increased attendance at their events from those groups. They worked towards this goal by increasing diverse representation in leaflets and communications, and by making more basic information available in a range of languages, starting with Urdu.

In terms of activities, they decided to hold smaller gatherings that were local to their Birmingham clinic in order to engage more South Asian families. Yet, they faced many challenges with direct translations and actually getting people to attend the events they were putting on.

Tonia spoke about how they often had to go back to the drawing board after realizing that nothing would be achieved by simply ‘ticking boxes.’ Instead, the real change had to come from within the organisation and organizational culture itself. This realization caused them to refocus on adapting the events and resources they already had, rather than creating new ones that had only served to create sub communities.

Tonia emphasized that communication was key. They started to have one-to-one phone calls with members of the community to learn firsthand the barriers that people were facing in attending events so that they could help reduce such barriers. By having a more culturally competent staff team, they found that the team could approach this communication with confidence. That confidence resulted in more successful interactions overall.

In the end, many individuals faced barriers with practical things, such as travel and cost. This was an area where BBS could actually make a tangible difference. Tonia highlighted that you have to enable people to actively want to get engaged in order to drive actual engagement. She stated that sometimes the most simple things can be the most beneficial solutions.

Dr Parveen Ali, The University of Sheffield

We were then joined by Dr Parveen Ali for something a bit different. Dr Parveen Ali talked us through the importance of providing culturally competent services. Parveen emphasized the idea of racism as something institutional and systemic, rather than just something consisting of individual acts of discrimination or violence. She encouraged us all to be aware of this when approaching cultural competency.

To be culturally competent, Parveen highlighted being aware of one’s own stereotypes and assumptions. She encouraged us to recognizing the diverse interpretations of religious teachings, be aware of the ways in which people might draw on religious or cultural teachings to help process situations, and support access to well informed guidance as well as clinical support wherever possible. Parveen presented these as basic ways to make your organisation more open to diverse communities. By having conversations, we can better understanding different perspectives.

Maureen Gwam, Sickle Cell Young Stroke Survivors

The final speaker of the day was Maureen Gwam, who spoke to us about the Family Resilience Programme at SCYSS and how they got the intended audience to engage with the programme. The Family Resilience Programme ran in 2015 and was designed to be an informal holistic programme focusing on a community approach away from the clinical environment. It was run with a multi-disciplinary team, including a clinical psychologist.

The theory of the course was that in the context of chronic disease, and more specifically sickle cell disease, resilience could be achieved with an increased understanding, new coping strategies, social support, relaxation techniques and improved communication skills within family groups.

In order to minimize barriers to the programme, SCYSS offered it to the whole family. They provided families with all their meals, paid all their transportation costs, chose a non-clinical setting, offered childcare, provided a central venue and much more.

Maureen put emphasis on understanding physical barriers as well and emotional and psychological, to increase engagement. A great tip that Maureen put forward was the value in seeing people as seldom listened to, rather than seldom heard. That puts the onus on proactive listening and outreach, rather than waiting for people to come to you in order to be heard.



Representing your community: Engaging with ethnic minority communities

by Philippa Norman time to read: 15 min