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Description
QUALITY
Background
Reconsenting research participants when they reach Age of Majority (AOM) – age 18 in the state of Texas – is a vital responsibility of the pediatric research world. It requires tracking and planning for an activity that may not happen until months, years, or over a decade later. Not obtaining AOM consent may violate the rights of the research participant, as well as impede the ongoing collection and usage of their research data. At the Center for Cancer and Blood Disorders (CCBD) Clinical Research Office (CRO), a very manual process was being used to identify and notify staff of upcoming AOM activities. Thus, we sought to automate the process for ease and efficiency in tracking and communicating AOM dates.
Methodology
First, we transferred existing AOM tracking data from an Excel spreadsheet to a SharePoint list. Next, we determined the desired frequency, email content, and individuals to be notified of the upcoming AOM dates. Finally, we leveraged our organization’s Information Systems (IS) team to build SharePoint flows using PowerApps that enabled automated notifications and secure access.
Outcomes
The SharePoint AOM List has simplified the process for adding new participants, maintaining a current list, assigning individuals to receive notifications, and alerting staff of upcoming AOM dates. The automated emails are sent only to the assigned parties when a research participant’s AOM date is approaching within the next 30 days, 2 weeks, or 1 week.
The automated method for tracking upcoming AOM dates has proven to alleviate the burden on coordinators by eliminating the need to regularly check a database for upcoming AOM dates and reducing the manual email reminders to clinic staff. With flexibility built into the design of the SharePoint list and automated flows, we can confidently track AOM participants and ensure relevant parties receive reminders in a timely manner.
Publication Date
9-27-2024
Keywords
Research, Participants, Consenting Age
Disciplines
Pediatric Nursing
Recommended Citation
Pappen, Beena; Therrian, Lindsay; and Lawrence, Bobby, "Reducing the Burden of Tracking Age of Majority (AOM) Research Participant Consents" (2024). 2024. 14.
https://scholarlycollection.childrens.com/nursing-anf2024/14
Creative Commons License
This work is licensed under a Creative Commons Attribution-NonCommercial-No Derivative Works 4.0 International License.
