Parry, Monica https://orcid.org/0000-0002-6941-1380
Bjørnnes, Ann Kristin
Toupin-April, Karine
Najam, Adhiyat
Wells, David
Sivakumar, Aditi
Richards, Dawn P.
Ceroni, Tina
Park, Marianne
Ellis, Anne K.
Gilron, Ian
Marlin, Susan
Funding for this research was provided by:
Canadian Institutes of Health Research (397455)
Article History
Accepted: 19 September 2020
First Online: 7 October 2020
Change Date: 18 November 2020
Change Type: Correction
Change Details: A Correction to this paper has been published:
Change Details: https://doi.org/10.1007/s40271-020-00481-0
Declarations
:
: All authors contributed to the design of the project. M. Parry and DR were responsible for leading the research and ensuring all timelines were met. SM/CTO was a collaborating partner. AKB and KTA led the broad map of the literature. AKB, KTA, AN, DW and AS performed database data abstraction using standardized data extraction forms capturing information on sex/gender and SPOR’s patient engagement guiding principles of inclusiveness, support, mutual respect, and co-building. M. Parry, DR, IG, KTA and SM presented at the POR consultation workshop. M. Parry, DR, KTA and DW presented at the new/early investigator training day. AKB analyzed the SUS data. Patient partners (TC, AN, DW) took field notes during the investigator training day. AKB analyzed and developed themes from the field notes. M. Park provided feedback regarding accessibility of the decision aids. All authors approved the final manuscript prior to submission and are accountable for all aspects in ensuring the accuracy and integrity of work across all phases of the project. All patient partners received compensation by level of engagement as outlined in the Recommendations on Patient Engagement Compensation prepared by the SPOR Networks in Chronic Diseases and the Primary and Integrated Health Care Innovations Networks in Canada []. Compensation was provided in cash or cash equivalents pending preferences of the patient partner. Reimbursement for all travel-related expenses to attend the patient-oriented workshop and the new/early investigator training day was also provided.
: This work was supported by a Canadian Institutes of Health Research (CIHR) POR Collaboration Grant Fall 2017 competition (397455), Ottawa, ON, Canada.
: Not applicable.
: The authors declare that they have no competing interest.
: Ethics approval was obtained from the University of Toronto (36071, 20 June 2018 and 21 May 2019 [renewal]). This was a 1-year project; Phase 1 began in March 2018, Phase 2 began in November 2018, and Phase 3 began in March 2019. Knowledge will be disseminated through conference presentation, publication and educational national public forums (POR training), and through fact sheets, Tweets, and webinars posted on the CTO website as to key stakeholders and programs (e.g. health charities).
: Participants were not recruited for this project. The project aimed to specifically build capacity for patient engagement and POR in clinical trials. Specific objectives were to (1) create capacity and identify opportunities for patient engagement in clinical trials; and (2) enhance new/early investigator skills related to POR. As such, no identifying information was collected from workshop or training-day participants, and no formal consents were obtained.