Publicação
Patient organisations' views, motivations and experiences on patient involvement in cancer research
| Resumo: | 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. |
|---|---|
| Autores principais: | Roquette, Constança |
| Outros Autores: | Crisóstomo, Sofia; Milagre, Tamara; Ribeiro, Rute Simões; Pedro, Ana Rita; Valente, André |
| Assunto: | ONCOLOGY Patient Participation Patient-Centered Care General Medicine SDG 3 - Good Health and Well-being |
| Ano: | 2024 |
| País: | Portugal |
| Tipo de documento: | artigo |
| Tipo de acesso: | acesso aberto |
| Instituição associada: | Universidade Nova de Lisboa |
| Idioma: | inglês |
| Origem: | Repositório Institucional da UNL |
| _version_ | 1866752609788887040 |
|---|---|
| author | Roquette, Constança |
| author2 | Crisóstomo, Sofia Milagre, Tamara Ribeiro, Rute Simões Pedro, Ana Rita Valente, André |
| author2_role | author author author author author |
| author_facet | Roquette, Constança Crisóstomo, Sofia Milagre, Tamara Ribeiro, Rute Simões Pedro, Ana Rita Valente, André |
| author_role | author |
| contributor_name_str_mv | NOVA School of Business and Economics (NOVA SBE) Escola Nacional de Saúde Pública (ENSP) Comprehensive Health Research Centre (CHRC) - Pólo ENSP BMJ Publishing Group RUN |
| country_str | PT |
| creators_json_txt | [{\"Person.name\":\"Roquette, Constança\"},{\"Person.name\":\"Crisóstomo, Sofia\"},{\"Person.name\":\"Milagre, Tamara\"},{\"Person.name\":\"Ribeiro, Rute Simões\"},{\"Person.name\":\"Pedro, Ana Rita\"},{\"Person.name\":\"Valente, André\"}] |
| datacite.contributors.contributor.contributorName.fl_str_mv | NOVA School of Business and Economics (NOVA SBE) Escola Nacional de Saúde Pública (ENSP) Comprehensive Health Research Centre (CHRC) - Pólo ENSP BMJ Publishing Group RUN |
| datacite.creators.creator.creatorName.fl_str_mv | Roquette, Constança Crisóstomo, Sofia Milagre, Tamara Ribeiro, Rute Simões Pedro, Ana Rita Valente, André |
| datacite.date.Accepted.fl_str_mv | 2024-01-24T00:00:00Z |
| datacite.date.available.fl_str_mv | 2024-02-09T00:01:41Z |
| datacite.date.embargoed.fl_str_mv | 2024-02-09T00:01:41Z |
| datacite.rights.fl_str_mv | http://purl.org/coar/access_right/c_abf2 |
| datacite.subjects.subject.fl_str_mv | ONCOLOGY Patient Participation Patient-Centered Care General Medicine SDG 3 - Good Health and Well-being |
| datacite.titles.title.fl_str_mv | Patient organisations' views, motivations and experiences on patient involvement in cancer research A pilot study in Portugal |
| dc.contributor.none.fl_str_mv | NOVA School of Business and Economics (NOVA SBE) Escola Nacional de Saúde Pública (ENSP) Comprehensive Health Research Centre (CHRC) - Pólo ENSP BMJ Publishing Group RUN |
| dc.creator.none.fl_str_mv | Roquette, Constança Crisóstomo, Sofia Milagre, Tamara Ribeiro, Rute Simões Pedro, Ana Rita Valente, André |
| dc.date.Accepted.fl_str_mv | 2024-01-24T00:00:00Z |
| dc.date.available.fl_str_mv | 2024-02-09T00:01:41Z |
| dc.date.embargoed.fl_str_mv | 2024-02-09T00:01:41Z |
| dc.format.none.fl_str_mv | application/pdf |
| dc.identifier.none.fl_str_mv | http://hdl.handle.net/10362/163300 |
| dc.language.none.fl_str_mv | eng |
| dc.rights.none.fl_str_mv | http://purl.org/coar/access_right/c_abf2 |
| dc.subject.none.fl_str_mv | ONCOLOGY Patient Participation Patient-Centered Care General Medicine SDG 3 - Good Health and Well-being |
| dc.title.fl_str_mv | Patient organisations' views, motivations and experiences on patient involvement in cancer research A pilot study in Portugal |
| dc.type.none.fl_str_mv | http://purl.org/coar/resource_type/c_6501 |
| description | 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. |
| dirty | 0 |
| eu_rights_str_mv | openAccess |
| format | article |
| fulltext.url.fl_str_mv | https://run.unl.pt/bitstreams/4834d4f7-40ac-4b43-b20d-a12d2146c714/download |
| id | run_45cd7515e0833eaf898e5c3bb3bc8a2c |
| identifier.url.fl_str_mv | http://hdl.handle.net/10362/163300 |
| instacron_str | unl |
| institution | Universidade Nova de Lisboa |
| instname_str | Universidade Nova de Lisboa |
| language | eng |
| network_acronym_str | run |
| network_name_str | Repositório Institucional da UNL |
| oai_identifier_str | oai:run.unl.pt:10362/163300 |
| organization_str_mv | urn:organizationAcronym:unl |
| person_str_mv | Roquette, Constança Crisóstomo, Sofia Milagre, Tamara Ribeiro, Rute Simões Pedro, Ana Rita Valente, André |
| publishDate | 2024 |
| reponame_str | Repositório Institucional da UNL |
| repository_id_str | urn:repositoryAcronym:run |
| service_str_mv | urn:repositoryAcronym:run |
| spelling | engenObjectives 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.application/pdfenPatient organisations' views, motivations and experiences on patient involvement in cancer researchSubtitleenA pilot study in PortugalRoquette, ConstançaCrisóstomo, SofiaMilagre, TamaraRibeiro, Rute SimõesPedro, Ana RitaValente, AndréNOVA School of Business and Economics (NOVA SBE)Escola Nacional de Saúde Pública (ENSP)Comprehensive Health Research Centre (CHRC) - Pólo ENSPBMJ Publishing GroupHostingInstitutionOrganizationalRUNe-mailmailto:run@unl.ptrun@unl.ptISSNIsPartOf2044-6055URNIsPartOfPURE: 83055824URNIsPartOfPURE UUID: e3ac75c1-d5e8-424e-91f3-ccce14076277URNIsPartOfScopus: 85183335246URNIsPartOfPubMed: 38267237DOIIsPartOf10.1136/bmjopen-2023-0774442024-02-09T00:01:41Z2024-01-242024-01-24T00:00:00ZHandlehttp://hdl.handle.net/10362/163300http://purl.org/coar/access_right/c_abf2open accessONCOLOGYPatient ParticipationPatient-Centered CareGeneral MedicineSDG 3 - Good Health and Well-being537812 bytesliteraturehttp://purl.org/coar/resource_type/c_6501journal articlehttp://purl.org/coar/access_right/c_abf2application/pdffulltexthttps://run.unl.pt/bitstreams/4834d4f7-40ac-4b43-b20d-a12d2146c714/download |
| spellingShingle | Patient organisations' views, motivations and experiences on patient involvement in cancer research Roquette, Constança ONCOLOGY Patient Participation Patient-Centered Care General Medicine SDG 3 - Good Health and Well-being |
| status | SINGLETON |
| subject.fl_str_mv | ONCOLOGY Patient Participation Patient-Centered Care General Medicine SDG 3 - Good Health and Well-being |
| title | Patient organisations' views, motivations and experiences on patient involvement in cancer research |
| title_full | Patient organisations' views, motivations and experiences on patient involvement in cancer research |
| title_fullStr | Patient organisations' views, motivations and experiences on patient involvement in cancer research |
| title_full_unstemmed | Patient organisations' views, motivations and experiences on patient involvement in cancer research |
| title_short | Patient organisations' views, motivations and experiences on patient involvement in cancer research |
| title_sort | Patient organisations' views, motivations and experiences on patient involvement in cancer research |
| topic | ONCOLOGY Patient Participation Patient-Centered Care General Medicine SDG 3 - Good Health and Well-being |
| topic_facet | ONCOLOGY Patient Participation Patient-Centered Care General Medicine SDG 3 - Good Health and Well-being |
| url | http://hdl.handle.net/10362/163300 |
| visible | 1 |