TY - JOUR
T1 - Patient organisations' views, motivations and experiences on patient involvement in cancer research
T2 - A pilot study in Portugal
AU - Roquette, Constança
AU - Crisóstomo, Sofia
AU - Milagre, Tamara
AU - Ribeiro, Rute Simões
AU - Pedro, Ana Rita
AU - Valente, André
N1 - Funding Information:
This work was funded by Fundação para a Ciência e a Tecnologia (UIDB/00124/2020, UIDP/00124/2020 and Social Sciences DataLab - PINFRA/22209/2016), POR Lisboa and POR Norte (Social Sciences DataLab, PINFRA/22209/2016).
Publisher Copyright:
© 2024 BMJ Publishing Group. All rights reserved.
PY - 2024/1/24
Y1 - 2024/1/24
N2 - Objectives To characterise Portuguese cancer-related patient organisations and analyse their views, motivations and experiences on patient involvement in cancer research. Design A multistakeholder group, comprising patient representatives and researchers, codesigned a questionnaire after a literature review, online sessions and collaborative mind maps. In May 2021, a survey was conducted among representatives of Portuguese cancer-related patient organisations, focusing on four dimensions: experience in cancer research; perception of its outcomes; motivations and expectations on patient involvement in research; and organisation characteristics. Participants Twenty-seven representatives from Portuguese cancer-related patient organisations responded to the questionnaire, corresponding to a 64% response rate. Results Among the surveyed organisations, 26% have participated in clinical studies. Their involvement occurred in few stages of the research process and, mostly, with low levels of engagement. They showed 'great interest' in participating in most research steps, although this is not reflected in a high perception of influence over these same steps. More than half claimed to have contributed to the increase in patient recruitment and to a better understanding of informed consent by patients involved. Ensuring that research results are more aligned with the true needs of patients is the greatest motivation. Also, our results suggest that the organisation's number of employees and its integration into a European/International network play a relevant role in patient involvement in research. Conclusions This study provides the first in-depth characterisation of Portuguese cancer-related patient organisations and their views, motivations and experiences on patient involvement in cancer research. Most importantly, this study revealed that most of these organisations show great interest in being involved in different R&D stages to ensure that research results are aligned with patients' needs. Their motivation should be turned into greater and more meaningful involvement in practice, so that the cancer community can benefit from the outcomes of truly patient-centred research.
AB - Objectives To characterise Portuguese cancer-related patient organisations and analyse their views, motivations and experiences on patient involvement in cancer research. Design A multistakeholder group, comprising patient representatives and researchers, codesigned a questionnaire after a literature review, online sessions and collaborative mind maps. In May 2021, a survey was conducted among representatives of Portuguese cancer-related patient organisations, focusing on four dimensions: experience in cancer research; perception of its outcomes; motivations and expectations on patient involvement in research; and organisation characteristics. Participants Twenty-seven representatives from Portuguese cancer-related patient organisations responded to the questionnaire, corresponding to a 64% response rate. Results Among the surveyed organisations, 26% have participated in clinical studies. Their involvement occurred in few stages of the research process and, mostly, with low levels of engagement. They showed 'great interest' in participating in most research steps, although this is not reflected in a high perception of influence over these same steps. More than half claimed to have contributed to the increase in patient recruitment and to a better understanding of informed consent by patients involved. Ensuring that research results are more aligned with the true needs of patients is the greatest motivation. Also, our results suggest that the organisation's number of employees and its integration into a European/International network play a relevant role in patient involvement in research. Conclusions This study provides the first in-depth characterisation of Portuguese cancer-related patient organisations and their views, motivations and experiences on patient involvement in cancer research. Most importantly, this study revealed that most of these organisations show great interest in being involved in different R&D stages to ensure that research results are aligned with patients' needs. Their motivation should be turned into greater and more meaningful involvement in practice, so that the cancer community can benefit from the outcomes of truly patient-centred research.
KW - ONCOLOGY
KW - Patient Participation
KW - Patient-Centered Care
UR - http://www.scopus.com/inward/record.url?scp=85183335246&partnerID=8YFLogxK
U2 - 10.1136/bmjopen-2023-077444
DO - 10.1136/bmjopen-2023-077444
M3 - Article
C2 - 38267237
AN - SCOPUS:85183335246
SN - 2044-6055
VL - 14
JO - BMJ Open
JF - BMJ Open
IS - 1
M1 - e077444
ER -