Skip to main content
Top
Published in: BMC Cancer 1/2023

Open Access 01-12-2023 | Research

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

Authors: Paola Mosconi, Cinzia Colombo, Pasquale Paletta, Laura Gangeri, Chiara Pellegrini, Elena Garralda, Rosalba Miceli, Cinzia Brunelli, on behalf of CEE_DART Consortium

Published in: BMC Cancer | Issue 1/2023

Login to get access

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.
Appendix
Available only for authorised users
Literature
1.
go back to reference McIver S, Brocklehurst N. Public involvement: working for better health. Nurs Stand. 1999;14(1):46–52.CrossRefPubMed McIver S, Brocklehurst N. Public involvement: working for better health. Nurs Stand. 1999;14(1):46–52.CrossRefPubMed
2.
go back to reference Staley K, Elliott J, Stewart D, Wilson R. Who should I involve in my research and why? Patients, carers or the public? Res Involv Engagem. 2021;7(1):41.CrossRefPubMedPubMedCentral Staley K, Elliott J, Stewart D, Wilson R. Who should I involve in my research and why? Patients, carers or the public? Res Involv Engagem. 2021;7(1):41.CrossRefPubMedPubMedCentral
3.
go back to reference Nilsen ES, Myrhaug HT, Johansen M, Oliver S, Oxman AD. Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material. Cochrane Database Syst Rev. 2006;2006(3):CD004563.PubMedPubMedCentral Nilsen ES, Myrhaug HT, Johansen M, Oliver S, Oxman AD. Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material. Cochrane Database Syst Rev. 2006;2006(3):CD004563.PubMedPubMedCentral
5.
go back to reference Richards T, Montori VM, Godlee F, Lapsley P, Paul D. Let the patient revolution begin. BMJ. 2013;14(346):f2614.CrossRef Richards T, Montori VM, Godlee F, Lapsley P, Paul D. Let the patient revolution begin. BMJ. 2013;14(346):f2614.CrossRef
6.
go back to reference Trivedi P, Wykes T. From passive subjects to equal partners: qualitative review of user involvement in research. Br J Psychiatry. 2002;181:468–72.CrossRefPubMed Trivedi P, Wykes T. From passive subjects to equal partners: qualitative review of user involvement in research. Br J Psychiatry. 2002;181:468–72.CrossRefPubMed
7.
go back to reference Minogue V, Boness J, Brown A, Girdlestone J. The impact of service user involvement in research. Int J Health Care Qual Assur Inc Leadersh Health Serv. 2005;18(2–3):103–12.CrossRefPubMed Minogue V, Boness J, Brown A, Girdlestone J. The impact of service user involvement in research. Int J Health Care Qual Assur Inc Leadersh Health Serv. 2005;18(2–3):103–12.CrossRefPubMed
8.
go back to reference Wright D, Foster C, Amir Z, Elliott J, Wilson R. Critical appraisal guidelines for assessing the quality and impact of user involvement in research. Health Expect. 2010;13(4):359–68.CrossRefPubMedPubMedCentral Wright D, Foster C, Amir Z, Elliott J, Wilson R. Critical appraisal guidelines for assessing the quality and impact of user involvement in research. Health Expect. 2010;13(4):359–68.CrossRefPubMedPubMedCentral
11.
go back to reference Concannon TW, Meissner P, Grunbaum JA, McElwee N, Guise JM, Santa J, et al. A new taxonomy for stakeholder engagement in patient-centered outcomes research. J Gen Intern Med. 2012;27(8):985–91.CrossRefPubMedPubMedCentral Concannon TW, Meissner P, Grunbaum JA, McElwee N, Guise JM, Santa J, et al. A new taxonomy for stakeholder engagement in patient-centered outcomes research. J Gen Intern Med. 2012;27(8):985–91.CrossRefPubMedPubMedCentral
12.
go back to reference Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, et al. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect. 2014;17(5):637–50.CrossRefPubMed Brett J, Staniszewska S, Mockford C, Herron-Marx S, Hughes J, Tysall C, et al. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect. 2014;17(5):637–50.CrossRefPubMed
13.
go back to reference Wicks P, Richards T, Denegri S, Godlee F. Patients’ roles and rights in research. BMJ. 2018;25(362):k3193.CrossRef Wicks P, Richards T, Denegri S, Godlee F. Patients’ roles and rights in research. BMJ. 2018;25(362):k3193.CrossRef
14.
go back to reference Lang I, King A, Jenkins G, Boddy K, Khan Z, Liabo K. How common is patient and public involvement (PPI)? Cross-sectional analysis of frequency of PPI reporting in health research papers and associations with methods, funding sources and other factors. BMJ Open. 2022;12(5):e063356.CrossRefPubMedPubMedCentral Lang I, King A, Jenkins G, Boddy K, Khan Z, Liabo K. How common is patient and public involvement (PPI)? Cross-sectional analysis of frequency of PPI reporting in health research papers and associations with methods, funding sources and other factors. BMJ Open. 2022;12(5):e063356.CrossRefPubMedPubMedCentral
15.
go back to reference Buchanan M, O’Connell D, Mosconi P. Europa DONNA, the European Breast Cancer Coalition: lobbying at European and local levels. J Ambul Care Manage. 2004;27(2):146–53.CrossRefPubMed Buchanan M, O’Connell D, Mosconi P. Europa DONNA, the European Breast Cancer Coalition: lobbying at European and local levels. J Ambul Care Manage. 2004;27(2):146–53.CrossRefPubMed
16.
go back to reference Visco F. The National Breast Cancer Coalition: setting the standard for advocate collaboration in clinical trials. Cancer Treat Res. 2007;132:143–56.CrossRefPubMed Visco F. The National Breast Cancer Coalition: setting the standard for advocate collaboration in clinical trials. Cancer Treat Res. 2007;132:143–56.CrossRefPubMed
18.
go back to reference Pii KH, Schou LH, Piil K, Jarden M. Current trends in patient and public involvement in cancer research: a systematic review. Health Expect. 2019;22(1):3–20.CrossRefPubMed Pii KH, Schou LH, Piil K, Jarden M. Current trends in patient and public involvement in cancer research: a systematic review. Health Expect. 2019;22(1):3–20.CrossRefPubMed
19.
go back to reference Fitzgibbon J, Baillie J, Simon N, Nelson A. The role of the public in developing interventions: a reflection and critique of a cancer clinical trials unit’s model. Patient Prefer Adherence. 2014;8:1527–35.PubMedPubMedCentral Fitzgibbon J, Baillie J, Simon N, Nelson A. The role of the public in developing interventions: a reflection and critique of a cancer clinical trials unit’s model. Patient Prefer Adherence. 2014;8:1527–35.PubMedPubMedCentral
20.
go back to reference Dudley L, Gamble C, Allam A, Bell P, Buck D, Goodare H, et al. A little more conversation please? Qualitative study of researchers’ and patients’ interview accounts of training for patient and public involvement in clinical trials. Trials. 2015;27(16):190.CrossRef Dudley L, Gamble C, Allam A, Bell P, Buck D, Goodare H, et al. A little more conversation please? Qualitative study of researchers’ and patients’ interview accounts of training for patient and public involvement in clinical trials. Trials. 2015;27(16):190.CrossRef
21.
go back to reference Biddle MSY, Gibson A, Evans D. Attitudes and approaches to patient and public involvement across Europe: A systematic review. Health Soc Care Community. 2021;29(1):18–27.CrossRefPubMed Biddle MSY, Gibson A, Evans D. Attitudes and approaches to patient and public involvement across Europe: A systematic review. Health Soc Care Community. 2021;29(1):18–27.CrossRefPubMed
22.
go back to reference Yu R, Hanley B, Denegri S, Ahmed J, McNally NJ. Evaluation of a patient and public involvement training programme for researchers at a large biomedical research centre in the UK. BMJ Open. 2021;11(8):e047995.CrossRefPubMedPubMedCentral Yu R, Hanley B, Denegri S, Ahmed J, McNally NJ. Evaluation of a patient and public involvement training programme for researchers at a large biomedical research centre in the UK. BMJ Open. 2021;11(8):e047995.CrossRefPubMedPubMedCentral
23.
go back to reference Boylan AM, Locock L, Thomson R, Staniszewska S. ‘About sixty per cent I want to do it’: Health researchers’ attitudes to, and experiences of, patient and public involvement (PPI)-A qualitative interview study. Health Expect. 2019;22(4):721–30.CrossRefPubMedPubMedCentral Boylan AM, Locock L, Thomson R, Staniszewska S. ‘About sixty per cent I want to do it’: Health researchers’ attitudes to, and experiences of, patient and public involvement (PPI)-A qualitative interview study. Health Expect. 2019;22(4):721–30.CrossRefPubMedPubMedCentral
24.
go back to reference Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap)–a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009;42(2):377–81.CrossRefPubMed Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap)–a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009;42(2):377–81.CrossRefPubMed
27.
go back to reference Chalmers I, Bracken MB, Djulbegovic B, Garattini S, Grant J, Gülmezoglu AM, et al. How to increase value and reduce waste when research priorities are set. Lancet. 2014;383(9912):156–65.CrossRefPubMed Chalmers I, Bracken MB, Djulbegovic B, Garattini S, Grant J, Gülmezoglu AM, et al. How to increase value and reduce waste when research priorities are set. Lancet. 2014;383(9912):156–65.CrossRefPubMed
28.
go back to reference Price A, Schroter S, Snow R, Hicks M, Harmston R, Staniszewska S, et al. Frequency of reporting on patient and public involvement (PPI) in research studies published in a general medical journal: a descriptive study. BMJ Open. 2018;8(3):e020452.CrossRefPubMedPubMedCentral Price A, Schroter S, Snow R, Hicks M, Harmston R, Staniszewska S, et al. Frequency of reporting on patient and public involvement (PPI) in research studies published in a general medical journal: a descriptive study. BMJ Open. 2018;8(3):e020452.CrossRefPubMedPubMedCentral
29.
go back to reference Aries AM, Bailey P, Hunter SM. The mutual benefits of patient and public involvement in research: an example from a feasibility study (MoTaStim-Foot). Res Involv Engagem. 2021;7(1):87.CrossRefPubMedPubMedCentral Aries AM, Bailey P, Hunter SM. The mutual benefits of patient and public involvement in research: an example from a feasibility study (MoTaStim-Foot). Res Involv Engagem. 2021;7(1):87.CrossRefPubMedPubMedCentral
30.
go back to reference Carolan K, Charlot M, Gawuga C, Freeman E, Kim JH, Sprague ML. Assessing cancer center researcher and provider perspectives on patient engagement. Transl Behav Med. 2020;10(6):1573–80.PubMed Carolan K, Charlot M, Gawuga C, Freeman E, Kim JH, Sprague ML. Assessing cancer center researcher and provider perspectives on patient engagement. Transl Behav Med. 2020;10(6):1573–80.PubMed
31.
go back to reference Coulman KD, Nicholson A, Shaw A, Daykin A, Selman LE, Macefield R, et al. Understanding and optimising patient and public involvement in trial oversight: an ethnographic study of eight clinical trials. Trials. 2020;21(1):543.CrossRefPubMedPubMedCentral Coulman KD, Nicholson A, Shaw A, Daykin A, Selman LE, Macefield R, et al. Understanding and optimising patient and public involvement in trial oversight: an ethnographic study of eight clinical trials. Trials. 2020;21(1):543.CrossRefPubMedPubMedCentral
32.
go back to reference Jørgensen CR, Eskildsen NB, Johnsen AT. User involvement in a Danish project on the empowerment of cancer patients - experiences and early recommendations for further practice. Res Involv Engagem. 2018;4:26.CrossRefPubMedPubMedCentral Jørgensen CR, Eskildsen NB, Johnsen AT. User involvement in a Danish project on the empowerment of cancer patients - experiences and early recommendations for further practice. Res Involv Engagem. 2018;4:26.CrossRefPubMedPubMedCentral
34.
go back to reference Mosconi P, Antes G, Barbareschi G, Burls A, Demotes-Mainard J, Chalmers I, et al. A European multi-language initiative to make the general population aware of independent clinical research: the European Communication on Research Awareness Need project. Trials. 2016;12(17):19.CrossRef Mosconi P, Antes G, Barbareschi G, Burls A, Demotes-Mainard J, Chalmers I, et al. A European multi-language initiative to make the general population aware of independent clinical research: the European Communication on Research Awareness Need project. Trials. 2016;12(17):19.CrossRef
36.
go back to reference Mosconi P, Satolli R, Colombo C, Villani W. Does a consumer training work? a follow-up survey of the PartecipaSalute training programs. Health Res Policy Syst. 2012;1(10):27.CrossRef Mosconi P, Satolli R, Colombo C, Villani W. Does a consumer training work? a follow-up survey of the PartecipaSalute training programs. Health Res Policy Syst. 2012;1(10):27.CrossRef
37.
go back to reference Brtnikova M, Crane LA, Allison MA, Hurley LP, Beaty BL, Kempe A. A method for achieving high response rates in national surveys of U.S. primary care physicians. PLoS One. 2018;13(8):e0202755.CrossRefPubMedPubMedCentral Brtnikova M, Crane LA, Allison MA, Hurley LP, Beaty BL, Kempe A. A method for achieving high response rates in national surveys of U.S. primary care physicians. PLoS One. 2018;13(8):e0202755.CrossRefPubMedPubMedCentral
38.
go back to reference Johnson TP, Wislar JS. Response rates and nonresponse errors in surveys. JAMA. 2012;307(17):1805–6.CrossRefPubMed Johnson TP, Wislar JS. Response rates and nonresponse errors in surveys. JAMA. 2012;307(17):1805–6.CrossRefPubMed
Metadata
Title
Public and patient involvement: a survey on knowledge, experience and opinions among researchers within a precision oncology European project
Authors
Paola Mosconi
Cinzia Colombo
Pasquale Paletta
Laura Gangeri
Chiara Pellegrini
Elena Garralda
Rosalba Miceli
Cinzia Brunelli
on behalf of CEE_DART Consortium
Publication date
01-12-2023
Publisher
BioMed Central
Published in
BMC Cancer / Issue 1/2023
Electronic ISSN: 1471-2407
DOI
https://doi.org/10.1186/s12885-023-11262-x

Other articles of this Issue 1/2023

BMC Cancer 1/2023 Go to the issue
Webinar | 19-02-2024 | 17:30 (CET)

Keynote webinar | Spotlight on antibody–drug conjugates in cancer

Antibody–drug conjugates (ADCs) are novel agents that have shown promise across multiple tumor types. Explore the current landscape of ADCs in breast and lung cancer with our experts, and gain insights into the mechanism of action, key clinical trials data, existing challenges, and future directions.

Dr. Véronique Diéras
Prof. Fabrice Barlesi
Developed by: Springer Medicine