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Opportunities for Involvement

Opportunities for Involvement. Ruth Chandler Coordinator of Service User and Carer Involvement in Research Sussex Partnership NHS Foundation Trust. Opportunities for Involvement. Scoping of Question Design Management Data Collection Analysis of Findings

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Opportunities for Involvement

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  1. Opportunities for Involvement Ruth Chandler Coordinator of Service User and Carer Involvement in Research Sussex Partnership NHS Foundation Trust

  2. Opportunities for Involvement • Scoping of Question • Design • Management • Data Collection • Analysis of Findings • Writing up and Reporting of Findings • Audit of Conduct

  3. Practicalities of Involvement • Can’t just add service user and stir! Involvement needs to be carefully planned and negotiated in partnership with the right experts for the right study. • Resources-training, payment, expenses-need to be costed in to studies • Needs to start early, before key decisions finalized at Ethics Committee • Needs to be a shared learning encounter for all parties

  4. Recent Consultation and Collaboration • Mood as Input (F Jones, G Davies)- consultation in design, ethics approval and collaboration on recruitment and facilitation of focus groups. • MCBT for Older People -feasibility RCT-(P Chadwick, C Williams, S Whiting)- Consultation and collaboration in design and planned throughout project. Consultation supported by small PPI grant from RDS

  5. Funding for Involvement Groups • LEAF (Lived Experience Advisory Forum) is funded from the R and D Involvement budget. It meets three monthly and is the strategic hub for involvement at the Trust. Can broker consultancy for individual studies and themes and comment on research proposals. • Theme Specific Groups-some themes already have specialist groups which can advise more thoroughly on the range of individual studies in a theme. There is interest in LEAF to form a theme specific group for MARS. Theme specific groups are currently funded from the Involvement budget. • Individual studies intending to apply for RfPB can apply to RDS for a small PPI grant (up to £350) to support consultation in design

  6. Some Design Questions to take away • 1. Is the research question important or relevant to people living with clinical symptoms and/or caring for a family member or friend? • 2. Are the research outcomes important or likely to be of positive use to people living with clinical symptoms and/or caring for a family member or friend? • 3. Are the outcome measures relevant and necessary? For whom? • 4. Would people living with clinical symptoms and/or caring for a family member or friend be willing to take part in the research? Or is it so burdensome that they are either unlikely to agree to take part or stay in the project? • 5 Did the research team consult experts by lived experience when they designed the research? Do plans for continued involvement include active roles for consultation/collaboration? Is this sufficiently resourced? • 6. Does the study plan to report findings back to study participants and to the public? Are experts by lived experience involved in this? If not are the reasons for exclusion appropriate?

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