Strata Academy

Patient & Public Involvement in Systematic Reviews

When PPI strengthens review questions, search terms, and plain-language outputs — and what UK students can realistically document in dissertations

1. What PPI is (and is not)

Patient and public involvement (PPI) in research means people with lived experience of a condition — or carers, community representatives — advise on how research is designed, conducted, and shared. They are partners, not participants providing data for analysis.

PPI is not the same as recruiting patients into a trial, surveying patient satisfaction, or having a clinician supervisor who treats patients. PPI contributors may have no clinical training but bring experiential knowledge.

In systematic reviews, PPI does not replace dual screening or ROB 2. It improves relevance: the right question, understandable outcomes, and dissemination that reaches patients and charities.

UK NIHR and many medical schools expect proportionate PPI — scaled to project size. A student dissertation with one PPI advisory meeting is valid if documented; claiming 'full co-production' without evidence is not.

• PPI — advisory partnership throughout
• Participation — patients as research subjects
• Engagement — one-way dissemination only
• Co-production — shared decision-making on priorities (stronger PPI model)

2. Why PPI matters for evidence synthesis

Review teams often choose outcomes that matter to regulators but not to daily patient life — HbA1c instead of hypoglycaemia fear, or radiological endpoints instead of functional recovery. PPI challenges these choices early.

Patients suggest search terms clinicians miss ('brain fog' for cognitive symptoms), grey literature sources (charity reports, patient forums cited cautiously), and subgroups (young adults, carers) that refine eligibility.

Plain-language summaries co-written with PPI increase impact — charities share them, GPs cite them in consultations, and examiners see public engagement skills.

Appraising published reviews: check whether authors report PPI. Absence does not automatically invalidate clinical conclusions but may explain outcome choices that seem disconnected from patient priorities.

3. When to involve PPI contributors

Protocol stage (ideal): refine PICO, prioritise outcomes, review PROSPERO plain-language summary.

Search stage: suggest synonyms and patient-facing sources; caution against unscientific forum anecdotes as evidence.

Interpretation: discuss whether pooled effects are meaningful in daily life — links to minimal clinically important difference.

Dissemination: co-design infographic, lay summary, social media thread for charity partners.

Late invite only at write-up ('please read our 8,000-word chapter') is tokenistic — examiners and PPI leads recognise it.

4. Practical involvement methods for students

One to three advisory meetings (virtual or in-person) with 2–4 PPI contributors is realistic for SSC timelines. Use a structured agenda: present draft PICO, ask 'what matters most?', note changes.

Involve your university PPI lead or medical school patient panel — many have existing groups.

Use plain language in meetings; provide honoraria or vouchers per institutional policy; obtain consent for acknowledging contributors by name or role.

Document in dissertation methods: recruitment route, number of contributors, topics discussed, changes made, limitations (e.g. single meeting, no repeat engagement).

1. Contact faculty PPI lead at proposal stage
2. Prepare 1-page lay summary of draft protocol
3. Run 60-minute structured advisory session
4. Record changes to PICO/outcomes/search terms
5. Acknowledge contributors in dissertation (with consent)

5. What to write in your methods section

Use GRIPP2 or similar reporting guidance as a checklist: aim of PPI, methods of involvement, stages involved, results of involvement (what changed), reflections, impact.

Example sentence: 'Two patient advisors with lived experience of rheumatoid arthritis reviewed the draft protocol and recommended adding patient-reported fatigue as a secondary outcome and the search term "morning stiffness"; both were incorporated before PROSPERO registration.'

If PPI did not change methods, say so honestly and explain why (e.g. advisors agreed with clinician-led PICO).

Distinguish PPI from authorship — contributors are usually acknowledged, not co-authors, unless they meet ICMJE criteria.

6. Payment, ethics, and diversity

UK institutions increasingly require PPI payment or recognition — follow local rates. Never expect unpaid labour.

PPI advisory work on protocol design is usually outside IRAS 'research participant' ethics — but confirm with your faculty. Different rules apply if you interview patients about their experience for qualitative data.

Seek diverse voices — age, ethnicity, socioeconomic background — not only highly educated patient charity officers. Proportionate to project, not performative tokenism.

Avoid identifying individual PPI contributors in published papers without explicit written consent.

7. Appraising PPI in published systematic reviews

Journal club questions: Did authors report PPI at all? At which stages? Did PPI alter outcomes or only the discussion paragraph?

High-quality reviews increasingly publish PPI appendices. Absence in a 2024 NIHR-funded review is noteworthy; absence in a 2010 review is historical context.

Students should not downgrade AMSTAR 2 scores solely for missing PPI — AMSTAR 2 does not yet require it — but can discuss relevance limitations in critique coursework.

Link PPI quality to GRADE's indirectness domain when patient-important outcomes were omitted.

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