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Lancet Calls for Dedicated PPIE in UK Respiratory Virus Research

University of Leicester Leads PPIE Revolution in Respiratory Studies

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A Landmark Call from The Lancet for PPIE in UK Respiratory Virus Research

The Lancet has issued a compelling call for dedicated Patient and Public Involvement and Engagement (PPIE) in UK respiratory virus research, highlighting a critical gap in how academic studies incorporate public perspectives. Published on March 21, 2026, the correspondence by Daniel Pan and colleagues from the University of Leicester underscores the need for sustained public partnership amid post-pandemic deprioritization. Respiratory viruses continue to impose a heavy burden, driving annual surges in hospitalisations and deaths, yet public input remains fragmented.

At University Hospitals of Leicester NHS Trust and the University of Leicester, researchers organised a pioneering two-day event in July 2025 to launch the 'Breathe: Speak Out' PPI panel. Held at Leicester City Football Club's King Power Stadium, the family-friendly initiative drew over 300 ticket bookings in a week, with 79 attendees expressing interest in ongoing roles. This panel, now comprising 15–20 members, will shape research priorities, critique protocols, enhance recruitment, and influence dissemination strategies.

Understanding PPIE: Full Form, Process, and Its Role in University-Led Research

Patient and Public Involvement and Engagement (PPIE) refers to the active collaboration with patients, carers, and the public in designing, conducting, and disseminating research. Unlike dissemination (sharing results) or engagement (broad awareness), PPIE ensures voices influence questions asked, methods used, and outcomes prioritised. In UK universities, PPIE is increasingly mandated by funders like the National Institute for Health and Care Research (NIHR), transforming how respiratory studies are planned.

The process typically involves co-design workshops, surveys, and panels. Step 1: Recruit diverse representatives via community events. Step 2: Gather uncertainties through surveys. Step 3: Prioritise via workshops. Step 4: Embed in grant applications. Step 5: Report impacts transparently. Universities like Leicester exemplify this, reimbursing participants and tracking changes from input.

  • Recruitment: Target vulnerable groups disproportionately affected by viruses.
  • Prioritisation: Align with James Lind Alliance (JLA) methods.
  • Implementation: Adjust protocols for feasibility and equity.
  • Evaluation: Measure influence on recruitment and outputs.

This structured approach ensures research addresses real needs, boosting relevance and trust.

Post-COVID Deprioritisation: Why UK Universities Must Revitalise Respiratory Research

Despite COVID-19's lessons, respiratory virus research faces funding cuts and public fatigue. In England, flu, RSV, and COVID-19 cause thousands of deaths annually; RSV alone leads to 71 hospital admissions per 100,000 adults aged 65–74 and 251 per 100,000 over 75. Prolonged symptoms and chronic lung exacerbations persist, yet NIHR priorities shifted post-pandemic.

UK universities bear the brunt. Imperial College London's NIHR Health Protection Research Unit (HPRU) in Respiratory Infections tracks SARS-CoV-2 and influenza evolution. The University of Edinburgh's RESPIRE unit focuses on low-middle income country disparities, while Southampton's BRC tackles infections. Leicester's Translational Research Group highlights inequalities amplifying harms for susceptible groups.

Without dedicated efforts, universities risk misaligned studies ignoring carer burdens or community vulnerabilities.

The Breathe Speak Out Panel: University of Leicester's Pioneering Model

University of Leicester led with 'Breathe: Speak Out', supported by NIHR Leicester Biomedical Research Centre (BRC) and Clinical Research Facility (CRF). The event featured hands-on stations on prevention, vaccines, and participation, using age-appropriate materials and quiet spaces for inclusivity.

Outcomes: Panel formed to co-set priorities like transmission in homes and vaccine hesitancy. Feedback drove changes, e.g., simplifying consent forms. Leicester BRC event summary documents this success, positioning the university as a PPIE leader.

This model offers replicable steps for other institutions: community venues, clinician-led activities, rapid recruitment.

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NIHR-Funded University Centres Driving Respiratory PPIE Excellence

NIHR mandates PPIE in grants, requiring detailed plans in applications. Universities host BRCs/CRFs embedding it:

  • Imperial College London HPRU: Partners with patient groups for tuberculosis/influenza studies, enhancing recruitment.
  • University of Bristol: Respiratory PPIE group advises on trials, prioritising patient-centred outcomes.
  • University of Nottingham: Dedicated PPIE for respiratory, co-designing asthma/COPD research.
  • University of Southampton BRC: Integrates public in infection trials, recently completing major recruitment.
  • Oxford CARII: Collaborates with patients for applied respiratory innovation.

These centres train PhD students in PPIE, vital for future researchers. NIHR guidance emphasises budgeting for reimbursement and evaluation.

James Lind Alliance Partnerships: University-Led Priority Setting

JLA PSPs involve universities in co-creating top 10 uncertainties. Respiratory examples:

PSPLead University/OrgKey Priorities
BreathlessnessAsthma + Lung UK (unis involved)Management, causes, prevention
Sepsis (respiratory-linked)Sepsis Research FEATEarly detection, long-term effects
Community-Acquired PneumoniaMultiple unisAntibiotics, prevention
Equal Breath (Black communities)MRC Black in Biomedical ResearchDisparities in respiratory health

Universities like Edinburgh and Leicester contribute, ensuring PPIE informs national agendas.

Challenges and Solutions: Implementing PPIE in UK Higher Education

Challenges: Fragmented PPIE, tokenism, resource gaps. Solutions from unis:

  • Training: NIHR modules for researchers/students.
  • Funding: Embed in grants (e.g., 1-5% budget).
  • Equity: Target underserved via community events.
  • Evaluation: Use UK Standards for PPI, track impacts.

Leicester's event exemplifies: Lancet details rapid uptake.

Breathe Speak Out event at King Power Stadium, University of Leicester

Benefits: Enhancing Research Quality, Equity, and Careers at Universities

PPIE improves recruitment (up 20-30% in trials), relevance, and equity. For students/researchers: Builds skills for grants, publications. Careers in public health flourish; Leicester offers PhDs via NIHR ARC East Midlands.

Stakeholders: Patients gain voice; unis secure funding; policymakers get actionable insights.

a tall tower with a clock at the top of it

Photo by Johnny Briggs on Unsplash

Future Outlook: PPIE as Infrastructure in UK University Respiratory Research

With RSV vaccines rolling out and flu/RSV surges ongoing, unis must scale PPIE. NIHR's £50m equipment funding supports trials. JLA PSPs expand; RESPIRE eyes global links.

Actionable: Unis integrate PPIE training in MSc/PhDs; collaborate cross-institution. NIHR PPI guidance essential reading.

Career Opportunities in Respiratory Research and PPIE at UK Universities

Roles abound: Research assistants, PhD studentships (e.g., Leicester BRC), lecturers in public health. Explore research jobs. NIHR fellowships prioritise PPIE expertise, boosting CVs for academia/NHS.

NIHR-funded respiratory research centres at UK universities

Prospects bright amid £2bn quantum/respiratory investments.

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Frequently Asked Questions

💬What is PPIE in research?

Patient and Public Involvement and Engagement (PPIE) actively includes patients, carers, and public in shaping research from design to dissemination, ensuring relevance and equity.

🫁Why dedicated PPIE for respiratory viruses?

Respiratory viruses affect all ages with pandemic potential; fragmented PPIE misses cross-cutting needs. Lancet article calls for sustained panels like Breathe Speak Out.

🏟️How did University of Leicester launch Breathe Speak Out?

Two-day event at King Power Stadium drew 300+; hands-on stations led to 15-20 member panel for priorities and protocols.

🎓Which UK universities lead respiratory PPIE?

Leicester BRC, Imperial HPRU, Bristol, Edinburgh RESPIRE, Southampton BRC integrate PPIE in trials.

📋Is PPIE mandatory for UK research funding?

NIHR/UKRI require detailed PPIE plans in grants; poor reporting risks rejection.

📊What is respiratory virus burden in UK?

RSV: 251 hosp/100k over 75s; flu/COVID surges strain NHS annually.

🔢Role of JLA in respiratory priorities?

PSPs like Breathlessness (Asthma+Lung UK) rank top 10 uncertainties with unis.

📈Benefits of PPIE for university researchers?

Better recruitment, equity, grants; trains PhDs for careers.

⚠️Challenges implementing PPIE at unis?

Resources, tokenism; solutions: NIHR training, budgeted events.

💼Career paths in UK respiratory research?

PhDs, fellowships via NIHR; roles in BRCs, public health. Check research jobs.

🔮Future of PPIE in UK higher ed?

Infrastructure status; scales via JLA, NIHR investments.