Vis enkel innførsel

dc.contributor.authorParry, Monica
dc.contributor.authorBjørnnes, Ann Kristin
dc.contributor.authorToupin April, K
dc.contributor.authorNajam, Adhiyat
dc.contributor.authorWells, David
dc.contributor.authorSivakumar, A
dc.contributor.authorRichards, Dawn
dc.contributor.authorCeroni, Tina
dc.contributor.authorPark, Marianne
dc.contributor.authorEllis, Anne K
dc.contributor.authorGilron, Ian
dc.contributor.authorMarlin, Susan
dc.date.accessioned2020-10-07T11:18:10Z
dc.date.accessioned2021-01-25T10:15:08Z
dc.date.available2020-10-07T11:18:10Z
dc.date.available2021-01-25T10:15:08Z
dc.date.issued2020-10-07
dc.identifier.citationParry M, Bjørnnes AK, Toupin April K, Najam A, Wells D, Sivakumar A, Richards D, Ceroni T, Park M, Ellis AK, Gilron I, Marlin S. Patient Engagement Partnerships in Clinical Trials: Development of Patient Partner and Investigator Decision Aids. Patient. 2020en
dc.identifier.issn1178-1653
dc.identifier.issn1178-1653
dc.identifier.issn1178-1661
dc.identifier.urihttps://hdl.handle.net/10642/9411
dc.description.abstractBackground: A 2017 systematic review suggested patient engagement in clinical trials has been limited, with little active engagement in trial design or data analysis, interpretation or dissemination. Additionally, there remains limited sex/gender reporting in clinical trial research. Objectives: The overall goal of this project was to disseminate sex/gender knowledge and build capacity for patient engagement in clinical trials. Specifc objectives were to (1) create capacity and identify opportunities for patient engagement in clinical trials and sponsor- or investigator-led activities (e.g. clinical trial design and conduct); and (2) enhance new/early investigator sex/gender knowledge and skills related to patient-oriented research (POR). Methods: We used the Canadian Institutes of Health Research Strategy for Patient-Oriented Research (SPOR) Capacity Development Framework and the SPOR Patient Engagement Framework to guide three phases of this project: (1) conduct a scoping review using methods described by the Evidence for Policy and Practice Information (EPPI) and the Coordinating Centre at the Institute of Education (Phase 1); (2) host a 1-day POR consultation workshop (Phase 2); and (3) deliver a new/early investigator POR training day (Phase 3). Six electronic databases (CINAHL, MEDLINE, EMBASE, PsychInfo, the Cochrane Library, and AMED) were searched from 1996 using keywords and Medical Subject Heading (MeSH) terms in accordance with the International Association for Public Participation (IAP2) and the search criteria in the bibliographic databases. Standard approaches were used to search the grey literature. Results: A total of 79 studies and over 150 websites were subject to data abstraction by team members, capturing information on sex/gender and SPOR’s patient engagement guiding principles of inclusiveness, support, mutual respect, and co-building. Results were presented to 32 key stakeholders at the consultation workshop and input was sought on next steps using nominal group techniques. Based on the plethora of existing POR resources, relevant POR information from the scoping review was collated into two decision aids (patient and investigator) to determine readiness to engage with/as a patient partner in a clinical trial. The decision aids were presented at a POR training day with 88 new/early investigators, clinicians, patient partners and decision makers. The decision aids showed ‘good’ usability, assessed using the System Usability Scale (SUS). Attendees thought the decision aids were engaging, they increased their understanding of sex/gender, patient engagement and POR, and they would recommend them to others. POR principles and practices were integrated across all phases of the project. Patient partners (1) identifed research priorities/search terms; (2) collected/analyzed data; (3) designed the patient partner decision aid; and (4) disseminated the results through presentation. Conclusion: Our digital patient partner and investigator decision aids are the frst to provide information technology to deliver sex/gender, POR knowledge, and decision support beyond the traditional decision aids used for health screening and/or treatment decisions. The decision aids have the potential to make a signifcant contribution to Canada’s Strategy for POR and support the collaborative eforts of patients and investigators to build a sustainable, accessible and equitable health care system.en
dc.description.sponsorshipThis work was supported by a Canadian Institutes of Health Research (CIHR) POR Collaboration Grant Fall 2017 competition (397455), Ottawa, ON, Canada.en
dc.language.isoenen
dc.publisherSpringeren
dc.relation.ispartofseriesPatient;13
dc.rightsCreative Commons Attribution-NonCommercial 4.0 International (CC BY-NC 4.0) Licenseen
dc.rights.urihttps://creativecommons.org/licenses/by-nc/4.0/
dc.subjectPatient engagementsen
dc.subjectClinical trialsen
dc.subjectPatient-oriented researchen
dc.subjectDecision aidsen
dc.subjectDigital patient partnersen
dc.subjectInformation technologyen
dc.titlePatient Engagement Partnerships in Clinical Trials: Development of Patient Partner and Investigator Decision Aidsen
dc.typeJournal articleen
dc.typePeer revieweden
dc.date.updated2020-10-07T11:18:10Z
dc.description.versionpublishedVersionen
dc.identifier.doihttps://doi.org/10.1007/s40271-020-00460-5
dc.identifier.cristin1837921
dc.source.journalPatient


Tilhørende fil(er)

Thumbnail

Denne innførselen finnes i følgende samling(er)

Vis enkel innførsel

Creative Commons Attribution-NonCommercial 4.0 International (CC BY-NC 4.0) License
Med mindre annet er angitt, så er denne innførselen lisensiert som Creative Commons Attribution-NonCommercial 4.0 International (CC BY-NC 4.0) License