What is it like to do a Minisode with Beta Change? We ask Dr. Lisa Hynes who joined us in a past Minisode to talk about Psychology and Diabetes alongside her research about her experience.
I always LOVE speaking with the wonderful Katie Doyle, who made my first terrifying Minisode experience a total pleasure. In fact, the Minisode experience was such a new departure for me that it took me until a few months later to watch it! It wasn’t as harrowing an experience to watch the interview back as I had feared – we really touched on so many fun and interesting topics, that are really close to my heart. Katie’s thoughtful questions resulted in a conversation about the importance of understanding the psychology of living with diabetes, the role of research in understanding the needs of people with diabetes and diabetes service providers, and current trends in partnerships between researchers and people to whom the research matters. For me, the thread through all of this is connection.
Katie and I first connected online about a study I was doing. How often does research speak to us and connect us? So, either we’re massive nerds (possible), or research can be interesting both to those whose job it is to do the research and the targets or subjects of research. A huge thanks to Katie and Beta Change for giving me the opportunity to take part in a Minisode!
Among other things, researchers have quite recently learned the role and value of meaningful engagement with stakeholders in the research they are conducting, resulting in the movement known as Patient and Public Involvement (PPI) in research. One of the many places you can find out more about PPI is the INVOLVE UK website. The mission behind PPI is summarized by the phrase, Nothing about us without us. I am part of the D1 now study team in Galway, Ireland, which aims to develop and study a new approach to working with young adults to support the management of their type 1 diabetes. This team includes psychologists, doctors, nurses, a youth mental health expert, and a panel of 8 co-researchers: 18-25 year olds living with type 1 diabetes. The D1 now Young Adult Panel (YAP) is actively involved in every aspect of the D1 now study, including contributing to study decision-making, reviewing written materials and study tools, and revising interview questions for participants, conference presentations, and the content of the D1 now intervention.
Through our experiences in the D1 now study so far, the team has learned about the opportunities, as well as realities and challenges, that come with commitment to PPI in research. Challenges can include working out a schedule to coordinate the lifestyles of young adults, making sure that everyone truly has a voice, and everyone understands the terms being used. PPI gives researchers the opportunity to ask the most important questions and get the most ‘big picture’ answers. It’s worth those challenges and realities, you could say!
It undoubtedly seems perfectly obvious to involve young people with type 1 diabetes in research about young people with type 1 diabetes. Professional researchers and health service providers have always wanted to help the people they are researching, but a combination of things have resulted in the growth and vibrancy we are now seeing in the whole area of PPI. Two of the main things are: the message (which all health researchers are talking about right now) that our research is not having an influence on the way health services are delivered or the lives of people with different health needs, and the platforms provided by social media.
I recently heard that the results produced by research generally don’t influence the way things are done for about 17 years, if at all. Not what we want to see! So, amazing researchers, health service providers and members of the public have begun developing partnerships to ask the questions that matter to them, and use novel approaches to do important research. Twitter is absolutely full of examples of PPI partnerships that are making a real difference, like the It doesn’t have to hurt campaign.
During this Beta Change minisode, Katie was masterfully adding captions to the screen as we chatted through the different topics. At one point, I was talking about complex interventions, which are the types of projects we often do to change things in health services, where changing one thing often means changing many things. The caption Katie contributed during this part of the interview read: Complex interventions are patient-oriented changes in a clinical setting.
I remember thinking, I LOVE that. A term like ‘complex intervention’ definitely comes under the heading of ‘research jargon’, a no-no in the context of PPI. But, between us, the message could be communicated that what we were talking about was not disease-, condition-, or treatment-oriented, but person-oriented. Thank you, Katie and Beta Change, for the role you play in advocating for yourselves, and for people with diabetes, and for inviting research to join the party!
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