Our Core Activity: Public Participation, Partnership, and Governance
We collaborate with people with experience of MH conditions to direct research, to steer ethical, trustworthy, and transparent use of data, and to develop ways people can cooperate on MH research. One of DATAMIND’s “workstreams” is Public Participation, Partnership, and Governance. This includes patient/public involvement and engagement (PPIE). With a Lived Experience Advisory Group (LEAG) of patient/public contributors at its core, and supported by a dedicated PPI coordinator, this workstream ensures DATAMIND is driven by improving mental health care and services for the public. LEAG members help to lead DATAMIND, conduct their own work, and work with researchers’ needs across DATAMIND, offering advice and guidance.
The Journey Begins: Recruitment and Training
We recruited to the LEAG from across the UK. We aimed to engage people with personal/family experience of MH issues and an active interest in MH research. We sought a diverse group, including those new to research and with differing views on data, and welcomed applications from minority groups. We recruited 13 members, who vary in age, gender, ethnicity, geography, neurodiversity, disability status, and experience. To ensure meaningful engagement, we provided comprehensive support, including flexible arrangements and training sessions.
Fostering Collaboration and Transparency
Transparency is fundamental in data science and PPI. DATAMIND’s PPI coordinator ensures that LEAG members are engaged from the beginging of project objectives. This involves clearly outlining the project’s objectives, facilitating connections with researchers, and actively seeking and responding to feedback from the LEAG, including considerations of accessibility. Additionally, our LEAG members are embedded within all leadership and management groups, providing transparency at every stage of research design and decision-making. Our LEAG members are empowered as active contributors in all leadership and management meetings.
We prioritise open publication and dissemination of research outcomes, through the DATAMIND website, public engagement events, and through LEAG links to local PPI groups, charities, and other organisations. LEAG members are compensated for their time and efforts. They receive training and authorship credit for their contributions.
Celebrating Impact and Outcomes
LEAG members collaborate within DATAMIND and with external organisations. Notable examples include partnerships with MQ, McPin, HDRUK, Cancer Research UK, several universities, the UK Longitudinal Linkage Collaboration, and local communities. Together and individually they champion MH research.
DATAMIND and its LEAG were shortlisted for the 2024 HDR UK Patient and Public Involvement and Engagement Award for the LEAG’s achievements, some of which include:
- Designing and contributing to the DATAMIND website.
- Training early-career researchers.
- Developing an MH data science glossary and a data literacy course.
- Creating a diagram to aid meaningful involvement of patients, carers, and the public in research.
Louise, creator of this diagram, reflected on the work:
DATAMIND ensures meaningful involvement and value for patients, communities, and the public. Being part of LEAG inspired me to create a diagram showcasing PPIE’s role in research. The team’s support led to its wide impact, now used globally.
- Participation in an industrial forum, identifying key risks and opportunities of working with the pharmaceutical industry.
- Shaping DATAMIND’s strategy for business development and sustainability in a way that promotes public trust.
- Conducting original research examining patient attitudes to research for profit.
- Creating guidance for industrial collaboration.
- Writing an independent report about how personal experience can contribute to longitudinal research.
- Discussion of public opinion around artificial intelligence and MH, leading to an article solely by two LEAG members in a peer-reviewed journal (Frontiers in Psychiatry: https://doi.org/10.3389/fpsyt.2024.1347358).
Jan and Michael reflect on this opportunity:
As part of the LEAG for DATAMIND we have been given many diverse opportunities to be involved and share our lived experiences. A great example of this is being asked to write an opinion piece on AI and Mental Health. Neither of us thought we would be given such an opportunity to ‘have our name in lights’ in such a respected journal. This was only made possible by the support and trust shown by the DATAMIND team. We look forward to more members of the LEAG being enabled to express their opinions in this way.
Being part of DATAMIND provided the platform and professional support to enable us to write the article. Lived experiences of mental health issues provided the opinions and the content. The collaboration between the two of us created the respect and trust to share sensitive information that made the article deeply personal and firmly rooted in the real world.
- At the April 2023 MQ Data Science conference, four LEAG members led a panel discussion around their experiences of the LEAG, and tips and challenges around working with patients and members of the public in research.
- Inclusion of patient/public contributors as full applicants on DATAMIND’s renewal bid.
We are proud to have been part of DATAMIND 1 with the diverse, experienced, and enthusiastic LEAG. Our achievements surpassed all our expectations and enabled and empowered us to work with many other mental health research organisations. As Co-Investigators with DATAMIND 2 we are really excited by the opportunities and potential to build on our achievements from DATAMIND 1 and develop new and innovative ways to ensure co-production and co-design with people with lived experience.
Experiences and Reflections
LEAG members reflect on their experiences within and beyond DATAMIND:
I have spoken at MQ’s Mental Health Science Festival and am also helping with the upcoming paper on co-production. I have also talked about DATAMIND in both formal and informal settings. For example, with friends and also when training early career researchers in PPIE (also, at a conference in Sweden, including people who are advising the government on how to set up PPIE infrastructure in their country)
— Louise, LEAG member
Regardless of my qualifications I feel there is a chance to work on my strengths and improve my weaknesses, as I’m fully supported by the DATAMIND lead and the other fabulous PPIs. We all respect each other, and I feel it’s a safe place to be in. There’s always encouragement and great communication regarding up-and-coming opportunities and chance to enhance my knowledge. I’m grateful to received constructive feedback and always very pleasantly surprised to learn that my input achieved positive outcomes. I feel that DATAMIND always provides me with the information, in order for me to participate in a meaningful way. What more can I ask for?
— Andrea, LEAG member
I share my DATAMIND experiences and call on our ways of working and sharing messages about MH in all areas of my PPIE contributions. They are relevant beyond mental health and into research generally. I have discussed with family and friends with MH issues and guided them to our website and HDR UK and MQ for information. I have also presented at the Industry Forum after conducted the scoping review. I have presented at the MQ Data Science Festival in a panel session and given tips/challenges to researchers on PPIE with those with MH. I have collaborated on a paper on Co-Production with other LEAG members and been involved in the bid for Transparency Funding. Since DATAMIND I have joined CHECKPOINT research team, HDR UK PAG, NIHR Partnerships Board and CRUK Commercial Partnership Panel and the Steering Group for MQ Mental Health Mission work.
— Jan S, LEAG member
Conclusion: Rewriting the Narrative
At DATAMIND, our mission extends beyond data. Our LEAG are empowered to advocate for better support and services for those with MH problems. We encourage open discussions about data. Together, we push for improved research and support, placing the needs of people and communities at the forefront. Our journey is about empowerment, collaboration, and changing lives. We strive to make MH data usage more ethical, transparent, and inclusive, ensuring that every voice is heard and valued.
Being part of DATAMIND and sharing my lived experiences of lifelong mental health experiences with other members of the LEAG has shown me that my thoughts and ideas are part of a strong team full of passion and commitment to improve the lives of those living with mental health conditions. The safe space created by the DATAMIND team for open discussion and involvement has given me the knowledge and confidence to apply and work in other areas of health and research and make a public contribution that I am proud of and know it makes a difference to others. We have grown from a group sharing mental health experiences to friends with a strong bond of trust and the shared ability to really shape and transform the DATAMIND public contribution into a force for improving lives. My attitudes to mental health and its part in my life are richer and more informed because of my involvement in DATAMIND.
– LEAG member
