Collaborating with high-risk communities to reduce kidney health inequalities
Among the African and Afro Caribbean community (AACC), kidney disease is known to be more common but also more often undiagnosed. With funding from Kidney Research UK, Roseline Agyekum and her team at King’s College Hospital, are developing a peer educator led approach using urine testing technology and culturally appropriate educational materials to improve early detection of kidney disease in the AACC. This is being done in collaboration with Africa Advocacy Foundation (AAF), a Black owned media company Eagle London, and members of the AACC and they hope this will provide a model which can be translated to other high-risk communities.
There are around 1.2 million people with kidney disease in the UK who are undiagnosed. One possible reason is that awareness of chronic kidney disease (CKD) and engagement with healthcare is low within groups like the AACC, despite them being at high risk. Access to healthcare could also be a factor, impacting early diagnosis and intervention.
Roseline and her team want to better reach high risk groups like the AACC. The team plans to utilise a urine home-testing kit to help people with high blood pressure, identified by their GPs, to test their kidney function, where results show on a smartphone immediately. However, first they want to understand why there is low engagement about kidney disease within the AACC.
Assessing the situation
In 2019, the researchers ran a focus group with members from Africa Advocacy Foundation to determine if they found CKD information booklets in King’s College Hospital useful and informative. The focus group feedback concluded that the information was “written by professionals for professionals” – meaning that it was not understandable or relatable enough and did not meet the literacy level of the general public.
The team then conducted a survey among the AACC. They wanted to know if people from the AACC would like to get their kidney function tested, how and where. They also wanted to know why people might not want to do the above.
The survey results showed that many would be interested in getting checked but most people preferred to have someone of the same cultural background carry out their kidney function test. Factors such as lack of knowledge of CKD and immigration status were found to contribute to low engagement from the AACC.
These findings reinforce what is currently known about some of the reasons why underserved communities, such as the AACC, might not access healthcare and why CKD engagement is low. The conditions in which people are born, grow, work, live, amongst others, dramatically affect health. These are referred to as social determinants of health and can lead to health inequalities (avoidable and unfair differences in health status between groups of people or communities).
In collaborating with the AAF, Roseline and her team have shown that more needs to be done to reach the AACC, allay fears and ramp up CKD information sharing and testing in this community.
Roseline said: “One of the key things I have learned is that building and fostering trust within the black and ethnic minority community is important to health outcomes. How can the target communities be reached?
Roseline and her team will use peer educators (individuals from the same community who are trained to provide information and support) to work with the AACC. The peer educators, who Roseline calls “community champions,” have been recruited and are being trained using Kidney Research UK’s multi-award-winning peer educator model.
Neerja Jain, health equalities programme manager at the charity said: “Our amazing, multi-award-winning peer educators have demonstrated that, through the right ‘messenger’, the lives of people in underserved communities can be improved. Roseline’s work seeks to take this evidence-based model to the next level by addressing and breaking down health inequalities, a core priority for the charity. Our trained peer educators will provide crucial education and actively encourage self-care and testing in this high-risk community”.
Using the feedback from the first engagement, the team will develop culturally appropriate information in liaison with the AAF and Eagle London.
Meanwhile 15 patients, who are referred to as “CKD heroes”, have shared their story about living with CKD in a video documentary which has also been used to create posters and a website. These posters, and the powerful documentary, with help from the peer educators, will be used to raise CKD awareness within the AACC in the hopes of recruiting people to participate in home testing after being contacted by community champions.
Participants will be identified by local GP practices in South East London with low rates of urine testing for people with high blood pressure. They will be sent “Healthy io Minuteful” kidney kits that measure albumin (a type of protein) levels in urine which can be an indicator of kidney disease. Once dipped, based on the amount of albumin in the sample, the strip changes colour to reflect the level of participants’ kidney health. The strip will then be scanned using a specialised application (“Minuteful Kidney”) on the individual's smart phone where results are displayed on the spot. Community champions will contact people to provide reassurance, support and encouragement to do their testing. Results will also be uploaded into a database monitored by the project team and sent directly to the participant’s general practitioner (GP) for subsequent follow up.
After six months of receiving results, Roseline and her team plan to follow up with participants to see if they have seen their GP, and if they haven’t, why not. The team would also like participants to provide feedback on measures needed, if any, to improve further kidney health awareness campaigns.
They expect that this smartphone kidney health technology will produce fast, on the spot results that may help detect kidney disease quicker.
Roseline said: “We hope that through this research and collaboration, we will reduce kidney health inequalities, empower peer educators, and promote optimal kidney health for all”.
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