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
Writing up and
Reporting of Findings
• Audit of Conduct
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
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
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
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?