Evidence map›Paper›PMID 39456103›Full record

ArticleResearch involvement and engagement2024

Training and peer-group coaching for pairs of researchers and patient representatives to support continuous two-way learning.

Casper G Schoemaker, Inge Schalkers, Brigit A de Jong, Wilma Wissink, Sacha le Loux, Ronald A M Buijsen, Klaas Russcher, Frank A M van der Steeg, Janine Blom, Eva Vroonland

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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 2 papers.

0numbers the graph read from it
0cells of the map it votes in
2citing 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

2 citing papers in PubMed.

  1. Article
  2. Article
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

10 authors.

Casper G SchoemakerINVOLV, P.O. Box 13040, 3507 LA, Utrecht, The Netherlands. c.schoemaker@involv.nl.ORCID http://orcid.org/0000-0002-9547-0616
Inge SchalkersStichting Harteraad, The Hague, The Netherlands.
Brigit A de JongMS Center Amsterdam, Department of Neurology, Vrije Universiteit Amsterdam, Amsterdam Neuroscience, Amsterdam UMC Location VUmc, Amsterdam, The Netherlands.
Wilma WissinkPatient Representative and Member of the Knowledge Group of the Dutch National Sjögren's Patients Association, NVSP, Maarssen, The Netherlands.
Sacha le LouxPatient Advisory Board MS Center Amsterdam, Amsterdam UMC Location VUmc, Amsterdam, The Netherlands.
Ronald A M BuijsenDepartment of Human Genetics, Leiden University Medical Center, Leiden, The Netherlands.ORCID http://orcid.org/0000-0002-9722-8110
Klaas RusscherStichting SCA1 Patiëntenfonds, Beverwijk, The Netherlands.
Frank A M van der SteegStichting SCA1 Patiëntenfonds, Beverwijk, The Netherlands.
Janine BlomNetherlands Organisation for Health Research and Development (ZonMw), The Hague, The Netherlands.
Eva VroonlandINVOLV, P.O. Box 13040, 3507 LA, Utrecht, The Netherlands.ORCID http://orcid.org/0000-0003-1870-2919

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

backgroundPatient involvement is most common during the first phases of a research project. Despite good intentions, maintaining meaningful collaborations throughout the research process doesn't seem easy. Several training programmes for researchers and patients have been developed to stimulate continuous involvement. These are mostly one-time training sessions at the start of a project, for researchers and patients separately. We aimed to co-create a prolonged side-by-side programme for pairs of patient representatives and researchers, to stimulate mutual learning from the start and throughout the research projects.

methodsWe developed a group training and peer-to-peer support programme lasting 2-3 years for 4-5 pairs of researchers and patient representatives working together on a research project. The programme took 30 h, spread over 6-8 meetings. The main goal was mutual and bi-directional learning and maintaining the collaboration throughout the research projects. From the start, the pairs were instructed to discuss communication, roles, expectations and responsibilities to prevent misunderstandings. The character of the meetings was intended to evolve from training and peer support into peer-group coaching and support for the whole group. The programme was not a fixed method, it was adjusted to the context and the needs of the participants.

resultsThus far, the programme has been applied in 5 groups, with varying health topics and types of research. Patients' prior knowledge of research methods and researchers' experience with patient involvement varied within the groups. As a result of the side-by-side training power imbalances within pairs were reduced. All participants gained knowledge and experience in patient involvement. In subsequent group coaching sessions, they discussed issues and dilemmas on an equal footing. Most pairs found their way of working together, adapted to the wishes and capabilities of both partners. Differences between pairs were found to improve the discussions.

conclusionsWe co-created a prolonged side-by-side programme for pairs of patient representatives and researchers, to stimulate mutual learning from the start and throughout the research projects. The programme proved feasible for groups with different research types and health conditions. It fulfils an unmet need for researchers, patients and funders.

Indexed as

Mutual learningPatient involvementPeer-to-peerResearchSide-by-side training

Identifiers

PMID39456103
PMCPMC11512495

What OpenQuestion holds

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LicenceCC BY-NC-ND
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Registered trials

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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.