In the world of data science, having different viewpoints is important for generating new ideas and moving forward. The Data Science Meetings organised by MQ and DATAMIND provide a forum for the mental health data science community to share findings and best practices. At the event in April 2023, the Super Research Advisory Group (SRAG) were invited to form an expert Patient and Public Involvement and Engagement (PPIE) Panel. They took centre stage for an hour and discussed the topics and insights important to them. They shared their experiences and offered challenges and tips to researchers about including the public in their research.
Let’s take a closer look at the interesting things they said about this event.
Michael: DATAMIND SRAG Member
Being part of The Data Science Lived Experience Panel was a great experience. We were treated like VIPs, the audience was really interested in what we had to say, and I made lots of useful connections. On top of that, it was great to spend time with my fabulous SRAG colleagues.”
Michael’s thoughts really capture what the event was all about – a coming together of minds and a chance to make strong connections. Feeling respected and heard shows how important these events are for working together and learning in the data science community.
Jan: DATAMIND SRAG Member
We all met for the first time the evening before, and our shared passion for public involvement shone through our conversations from the start. It was great to be part of such an exciting event and share our ideas and tips on Patient and Public Involvement in data research with so many different people with so many different research roles. I enjoyed hearing about new projects and meeting new people.”
Jan’s thoughts show how strong passion can bring people together. Even though they had not met before, their shared commitment to involve the public created a bond among the panellists. This unity made it possible for them have the confidence to share ideas that can really improve how we do research with data.
Andrea: DATAMIND SRAG Member
I thoroughly enjoyed taking part in The Data Science Lived Experience Panel, held in London by MQ. It was amazing and so well organised, whereby we were seated comfortably in front of the room to deliver our SRAG presentation. The audience was so enriched with interest, wanting to learn from our personal experiences. There was an opportunity to network with others and to meet our colleagues in person. I can’t go without mentioning how thankful I am to Linda (SRAG Lead), who organised our overnight stay and transport. It was a pleasure to have that extra time relaxing with our members before the event.”
Andrea’s story shows how well the event was planned and how much the audience cared about the public being there. Having the panellists there in person, which does not happen often in our online world, gave a great chance to create real friendships. Saying thanks to Linda also reminds us how important PPIE leaders are in making events like this happen.
Jane: DATATMIND SRAG Member
What was so great about this experience was being part of a team – so often with lived experience you are a lone voice but with the SRAG you are supported by people who ‘’just get it!”
Jane shared how awesome it felt to be part of a team. Many times, when you share your own experiences, you might feel alone. But with the RAG, you are not alone – everyone understands each other! It’s like having a group of friends who really understand you.
Linda: PPIE Lead
As Patient and Public Lead for DATAMIND, I was honoured that the four members of the Research Advisory Group (SRAG) who took part in this event included me in their discussions. I enjoyed meeting up with them over several zoom calls prior to the event, where they readily agreed to the content for the hour-long panel between themselves. We all spent a very entertaining evening the night before the MQ meeting in London, discussing everything PPI, along with many other topics! SRAG members had travelled from Scotland, Wales, Yorkshire, and Manchester to be part of this panel.”
Linda played a pivotal role in making this event successful, and she tells us about the hard work behind the scenes. Even though the SRAG members were far apart, they worked well together because they all cared about the same topics. They talked before the event and became good friends. This event was more than just talking – it was about sharing ideas and thoughts empowering the panellists to develop and grow as public contributors.
The April 2023 Data Science Lived Experience Panel brought people together to share experiences. It showed that working together in data science is important, reminding us that people matter even in a tech-focused world.
To watch the full panel discussion, visit: https://www.youtube.com/watch?v=w80GB0OwfsU
To learn more about the DATAMIND Super Research Advisory Group, visit: https://datamind.org.uk/patients-and-public/