Making sure your research priorities are built on diversity
Dr Emily Burns, from Diabetes UK, explains how the Type 2 Diabetes PSP engaged and involved people from Black, Asian and minority ethnic groups throughout their priority setting process.
When we set out to find the top 10 priorities for Type 2 diabetes research, we wanted to make sure they represented everyone affected by the condition. In particular, people from Black, Asian and minority ethnic (BAME) communities, who are two to four times more likely to develop the condition.
It was really important to us that we reached as many people as possible from BAME communities, and here’s how we did it.
Involving the experts
Firstly, we made it one of our project objectives from the very beginning to achieve a 20 percent response rate. Setting ourselves such an ambitious target – we achieved 18 percent by the end of the process – helped us aim high, focus on the task at hand, and get experts involved right from the start.
The steering group held us to account: we updated on our progress at each meeting and discussed areas for improvement.
We asked people with Type 2, including people from BAME communities, to test our PSP survey before it went live. The feedback we received was really helpful, from changing language and reordering information, to taking another look at our layout and choice of colours.
Taking our messages offline and into the festivals
Once we felt we had an accessible survey, we moved our survey offline and out into the real world. This involved our Engaging Communities team, who focus on reaching different communities across the UK and supporting our pool of around 1000 Community Champions.
The team gave us great advice on engaging outside the box. For example, we took the surveys out to communities by attending religious and community festivals, including Mela festivals and Ramadan celebrations, with Community Champions. It’s worth bearing in mind though that people don’t always want to talk about research, or their health, when they’re celebrating! It’s important to catch people at a time when they’re able to focus and reflect. When people approach our stand at events they are often keen to know more about diabetes and the risks of diabetes. These conversations can help to initiate further discussions around research priorities and spread the word about the survey.
Language is key
Not everyone speaks English as a first language. Research priorities can be a tough concept to grasp anyway, let alone having to do so in another language. To try and help with this, we ran our survey through a readability calculator, to minimise complex sentences and unnecessary jargon.
We also provided information about the survey for our Community Champions, to discuss the purpose and highlight issues around participation and accessibility. They then went out into their communities, helping with vital translation.
Don’t wait for people to find you
In our final PSP workshop, we discussed the phrase “hard to reach”. One of our participants pointed out that people aren’t hard to reach – organisations and services are hard to access.
This was particularly relevant earlier on in our PSP process, when we changed our media strategy. We targeted BAME news outlets and radio stations, to take our conversation to the people we were trying to reach, rather than wait and hope that they find us.
For our final workshop, we based our shortlist of questions on the top 10 priorities of people with Type 2, healthcare professionals and people from BAME communities.
With around 18 percent of our respondents from BAME communities, we achieved one of the highest response rates for a PSP to date. As we work to find answers to these research questions, knowing that they represent the views of a wide range of people with Type 2 diabetes and healthcare professionals adds even more weight to their importance and credibility.
Click here to see the results and download the report of the Type 2 Diabetes PSP.