Reflection on engagement through our Strategic Advisory Board meeting

This Spring, researchers from the five universities and representatives from our partnering organisations gathered together for the first INTUIT Strategic Advisory Board (SAB) meeting, which took place at City, University of London. This half-day meeting was held close to project commencement in order to bring the academic team together with key stakeholders for fostering critical engagement and dialogue around the challenges and opportunities that we identified in the original funding proposal. The meeting provided the opportunity for agenda setting, and for re-visiting the project’s objectives, intended impacts, and its key beneficiaries and stakeholders. We considered how to develop the research plans in response to stakeholder advice and voiced concerns, to ensure the project goes forward in the right direction.

In the first part of the session, the academic researchers took turns to present the research aims and provisional study plans for the Work Package that they were leading, along with up to three key questions for the SAB members. The presentations triggered productive conversations with attendees that helped us further shape and refine what we set out to achieve. In the second part, we introduced our three research contexts to discuss key issues and main challenges for engagement: (1) Patient-generated data sharing with clinicians, (2) Personal data sharing within peer community; (3) Sharing beyond the peer community and clinic (see above). Overall, the meeting provided us with a space for listening to others whilst developing new and alternative perspectives as well as highlighting important aspects that were previously overlooked.

Capturing stakeholder perspectives for research co-creation

In conjunction with the meeting, we used storyboards depicting scenarios to reflect on the three research contexts of INTUIT with the SAB members. We invited their individual and professional perspectives on what key concerns need addressing and which important stakeholders may have been overlooked and need to be considered. This work with the storyboards was also a way to start actively monitoring potential impacts of the project.

Refining our research plans through dialogue

Following this first SAB meeting, the academic team has endeavoured to fully respond to the feedback and address members’ suggestions by revising study protocols. Revised plans are to be shared with the SAB members at a forthcoming meeting.

One key consideration to come out of the first meeting is how we collectively coordinate to provide updates about the development of research plans and studies to our stakeholders, as a product of the ongoing SAB dialogue; through listening and reflecting on feedback at the meeting, we realised as a team that we need to – and are able to – be more flexible in our plans for engaging INTUIT stakeholders.