Partnering with People at the HIN: HEAL-D

African & Caribbean communities in the UK are disproportionately affected by diabetes, with evidence that African & Caribbean communities are three times more likely to be affected than white Europeans. Additionally, there’s poorer control at diagnosis, where onset is 10 years younger. To help tackle this inequity, Healthy Eating and Active Lifestyles for Diabetes (HEAL-D), a type 2 diabetes self-management and education programme for people of African and Caribbean heritage, was launched in south London.

Initially, this course was designed using co-production methodology by Kings College London (using National Institute for Health and Care Research) funding. As well as working with people with lived experience of type 2 diabetes, the project engaged community leaders and healthcare professionals. Often, the process involved building trust with community “gatekeepers” such as faith leaders, and then engaging with individuals once credibility within the community had been established.

Through this engagement work, the project team identified barriers and facilitators to motivate lifestyle behaviour change, improve healthcare access, foster engagement amongst local communities, and identify appropriate cultural adaptations.

At present, we at the HIN are supporting HEAL-D through the National Insights Prioritisation Programme (NIPP). This is an initiative by the Accelerated Access Collaborative (AAC) and the National Institute for Health and Care Research (NIHR) to accelerate the evaluation and the implementation of innovation that supports post-pandemic ways of working, builds service resilience, and delivers benefits to patients. Through this programme, we‘re evaluating the delivery of HEAL-D online (led by Sophie) while preparing for national scale-up (led by Sally).

When planning our NIPP project, we were keen to continue with the co-production ethos and ensure that people with lived experience of type 2 diabetes helped to shape the project. To do this, we wanted to collaborate with people throughout, not just gather views as part of the qualitative evaluation.

This all sounded great in theory, but then we had to do it!

We believe that our lived experience collaborators should be fairly compensated for their time, given their contribution as equal partners to our projects. Therefore, we first prioritised building involvement in the project budget when sending our NIPP proposal. Once approved, recruiting people became easier as the developer of HEAL-D, Dr. Louise Goff, had the details of several enthusiastic people who had previously offered to support any further HEAL-D projects. After getting permission for their details to be passed on, we contacted everyone individually to explain more about the project and what we were asking them to do. We then had an introductory session where everyone got to know each other and shared their experiences of HEAL-D.

The group have supported us/the project offline by doing various tasks.  These included:

• Reviewing existing learning resources
• Suggesting questions to be used in the post-course questionnaire
• Conducting interviews as part of the evaluation
• Reviewing evaluation materials such as information sheets and consent forms

Additionally, the group has stayed connected via a WhatsApp group, which has enabled us to get quick input into the project through questions such as, "Would you prefer HEAL-D to be known as a ‘programme’ or a ‘course’?" Likewise, the group has served as a place for people to share advice, tips, and information on local diabetes initiatives.

As the project develops, we will ask for people's input in further activities, including the analysis of data collected for the evaluation and reviewing an updated HEAL-D website.

We are also involving people in other ways including conducting interviews with HEAL-D service users to gather their experience of HEAL-D online and seeking input from people who are not aware of or engaged with HEAL-D about their attitudes towards remote delivery and digital exclusion.

To recruit people for these activities, we reached out through creating a poster and then sharing it with local community organisations to share through their social media, newsletters, and other communication channels. We have also attended community events, to speak with people, get their input and invite them to join us.

Through building strong relationships with our group and reaching out to broader audiences to hear a range of voices, we have received valuable input and made sure that HEAL-D continues to be focused on the needs of those that use the service. We are pleased that we have been able to continue the HEAL-D involvement ethos and look forward to seeing the outputs that would not have been possible without involving people with lived experience.

If you would like to read more, check out this blog by Lorraine, a member of the group who recently shared her experience of the HEAL-D course to help spread the message about HEAL-D, or check out our webpage about the NIPP project: https://healthinnovationnetwork.com/projects/heal-d/.

This project is featured in our Annual Report 2022/23.