Betul Aslan ran the modified Delphi process for the Substance use, Alcohol and Behavioural Addictions in Autism (SABAA) project funded by the SSA. We caught up with Betul to ask about the mysterious Delphi.
SSA: So, starting at the beginning, what is a Delphi?
Betul: There are many forms of Delphi, which essentially is a method used to arrive at a group opinion or decision by surveying a panel of experts. It involves setting up a group of experts from different backgrounds who may also come together to discuss the information. The aim is to generate an over-inclusive list of potential items or questions which then go through a series of iterations virtually to reach a consensus on which should have the highest priority.
At a basic level, the process involves defining the area of interest, sending out questionnaires, and then collecting and summarising the responses. Then the responses are sent out again, repeating the process, until an agreement is reached. We used an online questionnaire and a number of stakeholder meetings to identify what a range of stakeholders thought most important.
An introduction to autism by Dr Janine Robinson and Chris Torry
Dr Janine Robinson and Chris Torry from the from the SABAA team give an overview of autistic spectrum disorder.
Why did you use the Delphi process for SABAA?
In the SABAA project, we aimed to define the key future questions in the areas of research, policy and practice and therefore we needed to reach a consensus on the priorities.
For this reason, we used the Delphi method to define the key questions to address the evidence gaps in the overlap between addictions and autism. We started with three subdomains: problematic alcohol use, substance use, and behavioural addictions/gambling disorders. As might be expected, defining the questions and gaps in the literature for those domains is such a big job that we could have ended up with hundreds of pages of questions.
We needed a practical solution because we wanted to make the answers available to everybody. We wanted to say ‘there are lots of priorities in this area, but these are the ones we need to focus on in practice, research and policy’.
So, you begin a Delphi process by identifying a group of experts. How did you decide on who to invite?
We started by defining the people who could contribute. We invited global experts in the autism and addictions fields to sit on our steering group.
It was an open and inclusive process, and many people from all around the world registered their interest in joining the steering group and as well as being stakeholders. We then identified the people who could be part of the Delphi from these and invited them to the process. We aimed to promote diversity as much as possible when inviting professional autism and addiction experts and people with lived experience. As the SABAA team, we were particularly keen to amplify the voice of people with lived experience.
Experts can be notoriously contrary when grouped together. When you got the questionnaires and focus group data back was it sometimes difficult to summarise everything?
Yes, it was, exactly! For example, the discussion around autism, addiction and stigma is a really hot topic. Some of the panel members and stakeholders had strong preferences for using specific language while others didn’t use that.
So, it was a little bit controversial during the data collection period, whether to keep the original data as it is or changing the language according to the general preference of the autistic community. We always aimed to be transparent and inclusive to all the answers. We therefore kept all the answers as they were as far as possible but also acknowledged that the autistic community prefers to use identity-first language. So, we use that language in our publications, online articles and other outcomes.
We should know more about other areas of addictions, and co-occurring conditions such as autism and other neurodiversities
Did you reach a consensus in the end?
We started with an exercise in which panel members ranked 38 questions as ‘critically important’, ‘important but not critical’ and ‘not important’ on a 9-point scale. Then along with the feedback and comments from the first round, these questions were rated again in the second round. We ended up with 14 questions that were ranked as critical by more than 70% of our panel members. So, we took this as indicating a level of consensus. Now we are at the stage of analysing the data from the third and final round of the Delphi process in which our panel members decide on the ranking order of these 14 questions. That then will enable us to reach the ultimate list of top 10 priorities in the SABAA project.
I know you are planning to publish your findings soon, but can you give us any teasers?
Looking at the literature there is lots of information but when we consider the overlap between addiction and autism, we don’t know quite as much. I believe that this process and the SABAA project will provide a valuable contribution to the literature at the intersection between these important areas as well as to practice and policy.
After the workshops and stakeholder meetings, I think that trying to reduce stigma by enhancing awareness is an important outcome of the project. So, this would be a critical and positive contribution to the field.
What did you enjoy about running a Delphi process?
For me, it was running the workshops. This was because we had all this survey data and a massive number of questions which we distilled into groups so that they become easier to analyse. But then we held the workshops to talk about all the data and help us understand the controversies and challenges in the field.
It was interesting and valuable for me to be a part of this process to learn from peoples’ experiences and to see how different their perspectives on addiction and autism could be. So, yes, this was the most enjoyable part.
“I drank because I was socially awkward, then I got sober and discovered I’m autistic”
In this blog, Chelsey Flood discusses her experiences of drinking and of 12 step support.
Having now been through a full Delphi process, what advice would you give to someone thinking of starting one themselves?
First, decide on which form of Delphi process you will use so that it is fit for the task in hand. We had some issues with the software that really affected the process. We solved them in time thankfully, but the problem was that if the process became too long, engagement rates began to fall. In the end, we had a good number of answers, so it was okay, but that was a little bit hard to manage if I’m honest.
I would say, when you have your Delphi members, arrange a couple of sessions before the full process to explain what happens a bit more in detail, especially when working with lay people who may be less familiar with following a process like this. We had two Delphi meetings in which we discussed the outcomes of the survey data as well as the process to increase familiarity. And that was really helpful, so I would recommend that.
Is there scope for more Delphi processes in addictions?
This has been a pioneering method in addictions, so I think this should be repeated in other areas. The James Lind Alliance does these things quite often, but it’s still uncommon in the addictions field. We should know more about other areas of addictions, and co-occurring conditions such as autism and other neurodiversities in order to better understand the current obstacles and enablers, identify the needs and future goals and make sure that all people could benefit equally from the addiction services.
SABAA is an SSA funded project bringing together experts to explore the links between autism, addictive behaviour and substance use disorders.
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