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Table 3 Group statements and words prioritised in the workshops

From: Public involvement in health research: what does ‘good’ look like in practice?

Family Faculty/ PenCRUPenPIG/PenCLAHRCAdviser Forum/CLAHRC NWC
How is this group best described in terms of what it does, and how it is set up?
Flexible membership – Family Faculty members can dip in and out of involvement in a way that fits flexibly around their lives, commitments and priorities
Influencing research at all stages
Partnership with researchers and parent carers, with the Family Involvement Coordinator role at the heart
Diverse experiences of parents of children with different conditions and ages
A safe, non-judgemental environment which allows researchers to tap into the wealth of information and knowledge stored in parent’s heads
What PenPIG does:
Public voices: not just one opinion, diverse experiences, perspectives.
Hands on/Activities: helping with research, PenCLAHRC management, students, reviewing proposals, academic papers.
Interpretation: layman’s language, critical view.
How is it set up:
Supported by PPI team with some self-governance.
Well financed.
Training
Members have different life experiences and varying backgrounds.
Themes identified in discussions are (no order of importance):
Governance
Sharing personal experience/research projects
Training
Collaborate/knowledge exchange
Dissemination
Resources the PRP have developed
Values and reach
What makes this group work?
Family Involvement Coordinator creates a safe space for work to happen
Involvement can be fun – meetings are not too serious, and there is fun and laughter. Family Fun Day as a way to say thank you to families
Enthusiasm
The fact that “I’m not just a parent carer” or “I’m not just a researcher”
Lunch is provided at meetings
Teamwork: working together, using the diversity of knowledge and experience within the group
Skills (attributes) of PenPIG: goodwill, volunteerism and the ability to give their opinion
Research projects: important research put forward for involvement.
Support from PenCLAHRC for PPI: refreshments, expenses and participation payments.
Staff: mutual respect between staff/researchers and PenPIG, a feeling of being valued.
Passion of PenPIG: wanting to change things for the future.
In order of importance:
Valuing each other’s experiences, opinions, values
Good leadership from the PRP staff. Good facilitator, willing to listen. Good leadership, keeps group focused on tasks relevant to the group.
Working as a team.
Recognising our strengths and weaknesses
Sharing personal experiences
What are the challenges facing this group, or being a member of this group?
Not hearing how involvement has made a difference
Group dynamics can be tricky with dominant personalities
Lack of confidence – speaking up in a group or realising you can contribute valuable input
Meetings can run over – vague meeting finishing times
Getting new members to join the Family Faculty – where and how to integrate without intimidating
Not always clear what is expected from Family Faculty at meetings – sending meeting agenda in advance is useful
Potentially/occasionally poor etiquette: lack of respect, focus, or attention to group rules could threaten the valued group dynamic.
Relationship of members: differing opinions, stale membership and strong personalities.
Practicalities of attending meetings: geographical spread, lengthy travel times, an individual’s health or the timing of a meeting.
Finance (sustainability): Funding for the future.
Lack of feedback: rushed meetings and lack of feedback afterwards.
In order of importance:
Uncertainty about the future? CLAHRC continuing?
Sustainability for existing members in future work
Staying involved in project opportunities
How can we demonstrate public involvement contributing to a reduction in inequalities in health
Staying united. Change in dynamics with new ways of working
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