Public and patient involvement: a survey on knowledge, experience and opinions among researchers within a precision oncology European project

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Abstract

Background

Patient and Public Involvement (PPI) is slowly but steadily being implemented in all phases of clinical research. As part of the European project “Building Data Rich Clinical Trials” a survey was launched to investigate the knowledge, experiences and opinions on this topic of clinicians and researchers from seven European clinical and non-clinical centers (Cancer Core Europe).

Methods

An invitation to take part in a cross-sectional web survey was sent to 199 clinicians and researchers working in the field of precision oncology. The questionnaire was developed ad hoc because no existing questionnaires met the purpose of this study. The analysis takes account of whether respondents had experience on PPI or not.

Results

On a total of 101 respondents, this survey reveals that 76.2% of them knew about PPI before answering the questionnaire, 54.5% had experience in the previous five years and 86.1% were interested in a training course on this topic. PPI knowledge grew together with career seniority (peak of 86.5% for established career professionals), while the group most interested in a course was the early-career professionals (100.0%). Finally, the majority of respondents stated they had no training or education on PPI (67.3% of experienced and 82.6% of not-experienced respondents).

Conclusions

This survey shows that most cancer researchers knew the term PPI, even if only a little more than half of them had any relative experience. Opinions on PPI benefits, negative effects, barriers and requirements differed between the groups of PPI experienced and not-experienced respondents, showing that experience itself can influence respondents’ opinions. Most of respondents reported they would prefer a training course based on practical rather than theoretical tools.

Supplementary Information

The online version contains supplementary material available at 10.1186/s12885-023-11262-x.

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Most cited references 32

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Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support.

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Research electronic data capture (REDCap) is a novel workflow methodology and software solution designed for rapid development and deployment of electronic data capture tools to support clinical and translational research. We present: (1) a brief description of the REDCap metadata-driven software toolset; (2) detail concerning the capture and use of study-related metadata from scientific research teams; (3) measures of impact for REDCap; (4) details concerning a consortium network of domestic and international institutions collaborating on the project; and (5) strengths and limitations of the REDCap system. REDCap is currently supporting 286 translational research projects in a growing collaborative network including 27 active partner institutions.

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Mapping the impact of patient and public involvement on health and social care research: a systematic review.

Jo Brett, Sophie Staniszewska, Carole Mockford … (2014)

There is an increasing international interest in patient and public involvement (PPI) in research, yet relatively little robust evidence exists about its impact on health and social care research. To identify the impact of patient and public involvement on health and social care research. A systematic search of electronic databases and health libraries was undertaken from 1995 to 2009. Data were extracted and quality assessed utilizing the guidelines of the NHS Centre for Reviews and Dissemination 2009 and the Critical Appraisal Skills Programme (CASP). Grey literature was assessed using the Dixon-Woods et al. (2005) checklist. All study types that reported the impact PPI had on the health and/or social care research study. A total of 66 studies reporting the impact of PPI on health and social care research were included. The positive impacts identified enhanced the quality and appropriateness of research. Impacts were reported for all stages of research, including the development of user-focused research objectives, development of user-relevant research questions, development of user-friendly information, questionnaires and interview schedules, more appropriate recruitment strategies for studies, consumer-focused interpretation of data and enhanced implementation and dissemination of study results. Some challenging impacts were also identified. This study provides the first international evidence of PPI impact that has emerged at all key stages of the research process. However, much of the evidence base concerning impact remains weak and needs significant enhancement in the next decade. © 2012 John Wiley & Sons Ltd.

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How to increase value and reduce waste when research priorities are set.

Iain Chalmers, Michael B Bracken, Ben Djulbegovic … (2014)

The increase in annual global investment in biomedical research--reaching US$240 billion in 2010--has resulted in important health dividends for patients and the public. However, much research does not lead to worthwhile achievements, partly because some studies are done to improve understanding of basic mechanisms that might not have relevance for human health. Additionally, good research ideas often do not yield the anticipated results. As long as the way in which these ideas are prioritised for research is transparent and warranted, these disappointments should not be deemed wasteful; they are simply an inevitable feature of the way science works. However, some sources of waste cannot be justified. In this report, we discuss how avoidable waste can be considered when research priorities are set. We have four recommendations. First, ways to improve the yield from basic research should be investigated. Second, the transparency of processes by which funders prioritise important uncertainties should be increased, making clear how they take account of the needs of potential users of research. Third, investment in additional research should always be preceded by systematic assessment of existing evidence. Fourth, sources of information about research that is in progress should be strengthened and developed and used by researchers. Research funders have primary responsibility for reductions in waste resulting from decisions about what research to do. Copyright © 2014 Elsevier Ltd. All rights reserved.

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Author and article information

Contributors

Paola Mosconi: paola.mosconi@marionegri.it

Journal

Journal ID (nlm-ta): BMC Cancer

Journal ID (iso-abbrev): BMC Cancer

Title: BMC Cancer

Publisher: BioMed Central (London )

ISSN (Electronic): 1471-2407

Publication date (Electronic): 30 August 2023

Publication date PMC-release: 30 August 2023

Publication date Collection: 2023

Volume: 23

Electronic Location Identifier: 814

Affiliations

[1 ]Laboratory of Medical Research and Consumer Involvement, Department of Medical Epidemiology, Istituto di Ricerche Farmacologiche Mario Negri IRCCS, Via Mario Negri 2, 20156 Milan, Milan, Italy

[2 ]GRID grid.417893.0, ISNI 0000 0001 0807 2568, Clinical Psychology Department, , Fondazione IRCCS Istituto Nazionale dei Tumori, ; Milan, Italy

[3 ]GRID grid.417893.0, ISNI 0000 0001 0807 2568, Palliative Care, Pain Therapy and Rehabilitation Unit, , Fondazione IRCCS Istituto Nazionale dei Tumori, ; Milan, Italy

[4 ]GRID grid.411083.f, ISNI 0000 0001 0675 8654, Vall d’Hebron Institute of Oncology (VHIO) and Vall d, , Hebron University Hospital, ; Barcelona, Spain

[5 ]GRID grid.417893.0, ISNI 0000 0001 0807 2568, Department of Clinical Epidemiology and Trial Organization, , Fondazione IRCCS Istituto Nazionale dei Tumori, ; Milan, Italy

Article

Publisher ID: 11262

DOI: 10.1186/s12885-023-11262-x

PMC ID: 10470190

PubMed ID: 37648965

SO-VID: 7213790b-53b1-41f9-b63d-d8bf5dcefd14

License:

Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

History

Date received : 21 April 2023

Date accepted : 5 August 2023

Funding

Funded by: European Union’s Horizon 2020 research and innovation programme

Award ID: No 965397

Award Recipient : Paola Mosconi Cinzia Colombo Pasquale Paletta Laura Gangeri Chiara Pellegrini Elena Garralda Rosalba Miceli Cinzia Brunelli

Custom metadata

ScienceOpen disciplines: Oncology & Radiotherapy

Keywords: patient and public involvement,participatory research,patient engagement,precision oncology,survey

Data availability:

ScienceOpen disciplines: Oncology & Radiotherapy

Keywords: patient and public involvement, participatory research, patient engagement, precision oncology, survey

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Public and patient involvement: a survey on knowledge, experience and opinions among researchers within a precision oncology European project

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Karger: Oncology

Most cited references 32

Research electronic data capture (REDCap)--a metadata-driven methodology and workflow process for providing translational research informatics support.

Mapping the impact of patient and public involvement on health and social care research: a systematic review.

How to increase value and reduce waste when research priorities are set.

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