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Patient and Public Involvement (PPI)

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NathanSkene edited this page Mar 26, 2026 · 1 revision

Patient and Public Involvement (PPI)

This page covers how to organise PPI events for the Neurogenomics lab, with a focus on our ongoing relationship with Parkinson's UK. PPI is a requirement for most UK funders and is genuinely valuable for shaping research priorities.

Key Contacts

Who Role Contact
Laura Jacobs Research Involvement Manager, Parkinson's UK ljacobs@parkinsons.org.uk / researchinvolvement@parkinsons.org.uk
Lauren Troy + Josh Imperial rooms, catering, purchase orders Via Jennifer Podesta
Megan Winterbotham Accessibility, risk assessments, PEEPs Floor lab manager

Planning Timeline

Start planning 8-10 weeks before your event date.

When Task
8-10 weeks before Submit PPI Support Request Form to Parkinson's UK
6-8 weeks before PDUK advertises the event and contacts previous participants
4-6 weeks before Confirm date, time, and venue with Laura
4 weeks before Book room via Lauren/Josh
3 weeks before Request catering via Lauren (get dietary requirements from Laura)
2 weeks before Request taxi quotes from Oak Tree Cars (oaktreecarsltd@btconnect.com)
2 weeks before Lauren raises purchase order for taxis
2 weeks before Prepare presentations (see rules below)
2 weeks before Submit PEEPs form for fire safety
1 week before Notify reception about visitors arriving
1 week before Notify Megan about elderly/mobility-impaired visitors
1 week before Borrow Exchanges cards from Laura if using them
Day before Print feedback forms and agenda

Venue

Events are held at the Sir Michael Uren Hub, White City Campus.

Important: Always specify White City in all communications with volunteers. Many people assume Imperial means South Kensington.

Budget

Item Cost Notes
Taxis ~£109 for 4-6 volunteers Oak Tree Cars, purchase order via Lauren
Catering Variable Internal college catering, ordered via Lauren
Honoraria £25/hour per person NIHR rates, offered to all participants
Volunteer transport reimbursement Variable E1 Non-employee Expense Claim Form

Annual PPI budget: £450/year. Include this in grant applications (see grant wording below).

All costs should be charged to the relevant grant code.

Grant Budget Wording

Use this standard text when including PPI costs in grant applications:

Funds are requested for conducting regular PPI activities including in-person meetings and ongoing engagement with patient collaborators. These funds will cover travel costs, subsistence, and monetary reimbursement/payment for their time and involvement. Costings are informed by NIHR guidelines: £12.50 half-hourly rate, £25 hourly rate, plus £5 for non-in-person meetings. (£450/year).

Standard Agenda (2-2.5 hours)

Time Activity
12:00-12:15 Welcome and introductions
12:15-12:45 Exchanges cards activity (paired conversations)
12:45-13:05 Break and light lunch
13:05-13:25 Presentation 1 + discussion
13:25-13:45 Presentation 2 + discussion
13:45-13:55 Sharing research / next steps
13:55-14:00 Summary and close

Presentation Guidelines

Structure

  • Always start with the basics. Explain DNA, RNA, and protein before anything else. You cannot go wrong starting by introducing the basics.
  • Define every acronym. Say "a protein called GFAP" not just "GFAP". Say "a technique called single-cell RNA sequencing, which lets us measure gene activity in individual cells" not "scRNA-seq".
  • Explain the why. Before showing results, explain why you studied this question and why it matters for people with the disease.
  • Use the framing: "We need solid foundations before we can develop drugs." This helps participants understand why basic research matters.
  • Make it visual. Use diagrams and images. Minimise text on slides.

Common Questions to Prepare For

Participants frequently ask these questions. Have answers ready:

  • "Is Parkinson's hereditary? Should my children be worried?"
  • "When will this research lead to treatments?"
  • "How is AI being used in your research?"

Exchanges Cards

Exchanges cards are art-based conversation starters developed by the MRC PPU in Dundee. They work very well for breaking the ice between scientists and patients.

  • Parkinson's UK has 6 boxes available to lend (must be returned after the event)
  • Contact Laura to borrow them
  • Allow 30 minutes in the agenda for the activity
  • Pair each scientist with a patient/volunteer for the conversation

These are consistently well received by both scientists and participants.

Post-Event Checklist

  • Collect feedback forms from participants
  • Process E1 Non-employee Expense Claim Forms for volunteer travel reimbursement
  • Send a thank-you email and summary of the event to Laura for distribution to volunteers
  • File feedback and notes for future reference

External Resources

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