Evidence map›Paper›PMID 39113146›Full record

ArticleResearch involvement and engagement2024

Ethical considerations in public engagement: developing tools for assessing the boundaries of research and involvement.

Jaime Garcia-Iglesias, Iona Beange, Donald Davidson, Suzanne Goopy, Huayi Huang, Fiona Murray, Carol Porteous, Elizabeth Stevenson, Sinead Rhodes, Faye Watson and 1 more

Abstract readLetter
In one paragraph

Article in Research involvement and engagement, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed
–field-weighted citation impact
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

5 citing papers in PubMed.

  1. Article
  2. Article
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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

11 authors.

Jaime Garcia-IglesiasCentre for Biomedicine, Self and Society, Usher Institute, University of Edinburgh, Edinburgh, UK. Jgarcia6@ed.ac.uk.
Iona BeangeCentre for Inflammation Research, Institute for Regeneration and Repair, University of Edinburgh, Edinburgh, UK.
Donald DavidsonCentre for Inflammation Research, Institute for Regeneration and Repair, University of Edinburgh, Edinburgh, UK.
Suzanne GoopyUsher Institute, University of Edinburgh, Edinburgh, UK.
Huayi HuangUsher Institute, University of Edinburgh, Edinburgh, UK.
Fiona MurraySchool of Health in Social Science, Medical School, University of Edinburgh, Edinburgh, UK.
Carol PorteousEdinburgh Clinical Research Facility, University of Edinburgh, Edinburgh, UK.
Elizabeth StevensonBiomedical Teaching Organisation, University of Edinburgh, Edinburgh, UK.
Sinead RhodesCentre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK.
Faye WatsonCollege for Medicine and Veterinary Medicine, University of Edinburgh, Edinburgh, UK.
Sue Fletcher-WatsonCentre for Clinical Brain Sciences, University of Edinburgh, Edinburgh, UK.

Funding

Economic and Social Research Council ES/X003604/1
6 · The paper itself

Abstract

Public engagement with research (PEwR) has become increasingly integral to research practices. This paper explores the process and outcomes of a collaborative effort to address the ethical implications of PEwR activities and develop tools to navigate them within the context of a University Medical School. The activities this paper reflects on aimed to establish boundaries between research data collection and PEwR activities, support colleagues in identifying the ethical considerations relevant to their planned activities, and build confidence and capacity among staff to conduct PEwR projects. The development process involved the creation of a taxonomy outlining key terms used in PEwR work, a self-assessment tool to evaluate the need for formal ethical review, and a code of conduct for ethical PEwR. These tools were refined through iterative discussions and feedback from stakeholders, resulting in practical guidance for researchers navigating the ethical complexities of PEwR. Additionally, reflective prompts were developed to guide researchers in planning and conducting engagement activities, addressing a crucial aspect often overlooked in formal ethical review processes. The paper reflects on the broader regulatory landscape and the limitations of existing approval and governance processes, and prompts critical reflection on the compatibility of formal approval processes with the ethos of PEwR. Overall, the paper offers insights and practical guidance for researchers and institutions grappling with ethical considerations in PEwR, contributing to the ongoing conversation surrounding responsible research practices.

Indexed as

And patient engagementEthical approvalEthical reviewManaging risksPatient-centred researchPatient-oriented researchPowerPublic engagementResponsibility

Identifiers

PMID39113146
PMCPMC11305016

What OpenQuestion holds

Textmetadata
LicenceCC BY
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.