Evidence map›Paper›PMID 36966346›Full record

ArticleResearch involvement and engagement2023

Patient and public involvement in research: the need for budgeting PPI staff costs in funding applications.

Anna De Simoni, Tracy Jackson, Wendy Inglis Humphrey, Jennifer Preston, Heather Mah, Helen E Wood, Emma Kinley, Laura Gonzalez Rienda, Carol Porteous

Open access · goldFull text readLetter
In one paragraph

Article in Research involvement and engagement, 2023. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 30 papers.

0numbers the graph read from it
0cells of the map it votes in
30citing papers in PubMed
21.0field-weighted citation impact, top 1% of its field
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

30 citing papers in PubMed, 48 citations in OpenAlex.

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  13. Review
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  16. Co-Production and Implementation of 'Count Me In': A Bottom-Up Approach to Inclusive Research and Participation in a National Health Service in England.Health expectations : an international journal of public participation in health care and health policy · 2025
    Article
  17. Article
  18. The Importance of Lived Experience: A Scoping Review on the Value of Patient and Public Involvement in Health Research.Health expectations : an international journal of public participation in health care and health policy · 2025
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  20. Involving People With Lived Experience in Electronic Health Record Database Studies Reflections and Learning From the CHOOSE Study.Health expectations : an international journal of public participation in health care and health policy · 2024
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4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors at 4 institutions in 1 country.

Anna De SimoniWolfson Institute of Population Health, Asthma UK Centre for Applied Research, Queen Mary University of London, London, UK. a.desimoni@qmul.ac.uk.
Tracy JacksonUsher Institute of Population Health Sciences and Centre for Medical Informatics, Asthma UK Centre for Applied Research, University of Edinburgh, Edinburgh, UK.
Wendy Inglis HumphreyUsher Institute of Population Health Sciences and Centre for Medical Informatics, Asthma UK Centre for Applied Research, University of Edinburgh, Edinburgh, UK.
Jennifer PrestonInstitute of Life Course and Medical Sciences, University of Liverpool, Liverpool, UK.
Heather MahWolfson Institute of Population Health, Queen Mary University of London, London, UK.
Helen E WoodWolfson Institute of Population Health, Asthma UK Centre for Applied Research, Queen Mary University of London, London, UK.
Emma KinleyUsher Institute of Population Health Sciences and Centre for Medical Informatics, Asthma UK Centre for Applied Research, University of Edinburgh, Edinburgh, UK.
Laura Gonzalez RiendaUsher Institute of Population Health Sciences and Centre for Medical Informatics, Asthma UK Centre for Applied Research, University of Edinburgh, Edinburgh, UK.
Carol PorteousUsher Institute of Population Health Sciences and Centre for Medical Informatics, Asthma UK Centre for Applied Research, University of Edinburgh, Edinburgh, UK.
Asthma UK · GBUniversity of Edinburgh · GBQueen Mary University of London · GBUniversity of Liverpool · GB

Funding

Asthma UK Centre for Applied Research AUK-AC-2018-01National Institute for Health and Care Research 16/136/109National Institute for Health and Care Research NIHR202037
6 · The paper itself

Abstract

backgroundPatient and Public Involvement (PPI) groups are becoming more established as collaborators with academic researchers and institutions to ensure that research is important and relevant to end users, and to identify areas that might have ethical considerations, as well as to advise on solutions. The National Institute for Health and Care Research UK Standards for Public Involvement in Research embody best practice for PPI, including support and learning opportunities that build confidence and skills for members of the public to play an invaluable and mutually productive role in research. However, the pivotal role of research and professional services (management and administrative) staff within academic institutions for sustaining and making this involvement successful is often overlooked. MAIN BODY: It takes significant effort to develop and sustain effective PPI in research. The six UK Standards for Public Involvement highlight the need for consistent, inclusive, well-governed and mutually respectful working relationships to sustain effective PPI contributions in health research. Productivity across a team of lay and academic members requires organisation and experience of implementing these standards by a dedicated PPI team, yet advice on PPI finances is usually focused on costs for patient panel members, and budgets in funding applications rarely consider the wider PPI team behind this involvement. As an exemplar, we reflect on how the Asthma UK Centre for Applied Research (AUKCAR) has developed a dedicated PPI Platform, with guidance for how PPI should be embedded throughout the research lifecycle, and detailed information to support the costing of PPI in funding applications. AUKCAR's work with established researchers, as well as Early Career Researchers and PhD students, is at the heart of a campaign to raise awareness of the importance of PPI in effective research planning.

conclusionFocusing attention on the staff behind best practice involvement in health research may stimulate a much-needed discussion to ensure flourishing PPI capacity, with significant patient and public benefit. With adaptation, the PPI expertise within AUKCAR can be translated more widely.

Indexed as

Community engagementHealthPatient and public involvementResearch

Identifiers

PMID36966346
PMCPMC10040101
OpenAlexW4360946570

What OpenQuestion holds

Textfull text, public
LicenceCC BY
measurements read4
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.