The Data and Resources Core has dual missions:
- To develop and share resources and provide supports that will advance research on deprescribing, and
- To spearhead initiatives to develop new science and consensus projects around measurement and data
In the beginning years of the network, we will be developing and disseminating resources that will be valuable to investigators conducting deprescribing research, and providing targeted consultations to investigators.
Ongoing mentorship is essential for junior investigators. However, sometimes both junior and senior investigators can benefit greatly from a targeted conversation with a content expert. Therefore, we have established a one-on-one consulting service.
Resources (Under Development) Include:
A comprehensive database of completed and ongoing studies
Investigators conducting deprescribing research need to know what other studies are in their area to avoid duplication of efforts, facilitate collaborations, gain insights, and harmonize measures across studies.
Have you been part of a completed or ongoing deprescribing study? Please sign up here so that we can email you to learn more about your study as the Core’s work progresses.
A compendium of measures
Investigators designing deprescribing studies need information about measures, including their definition, operationalization, and validity, as well as which ones are most important to patients and which ones can be compared across studies. As described in the Working Group Description below, we will develop a compendium of measures commonly used in deprescribing studies, including how they were defined in past studies of deprescribing and information on the validity and test characteristics of these variables. The Measures Working Group will contribute substantially to the content of this compendium.
A repository of measures relevant to older adults
Our network is focusing on measures particularly relevant to deprescribing. The Older Americans Independence Centers (OAIC) Geriatric Research Instrument Library (GRIL) has been working hard to develop a repository of measures that are applicable to older adults in general many of which will be useful to investigators doing deprescribing research.
A repository of Institutional Review Board (IRB) and Data Safety Monitoring Board (DSMB) materials for deprescribing studies
Deprescribing trials pose unique human subjects protections challenges – for example, how to define and attribute harms associated with stopping a medication – which investigators, IRBs, and DSMBs struggle to address. We will solicit, collect, organize, and summarize key materials on human subjects protections for deprescribing studies, including IRB and DSMB materials, informed consent documents, safety monitoring protocols, and so forth from investigators who have conducted deprescribing trials.
Do you have a deprescribing study that involved IRB and/or DSMB submissions? Please sign up here to receive an email about what information we’d like to collect as the Core’s work progresses.
Guide for data development, harmonization and management
Many single- and multi-site trials, particularly pragmatic trials, depend on electronic health record data to determine study eligibility and outcomes in a valid and consistent manner. This includes using these data to measure key markers of prevalent medication use and deprescribing. Using learnings from the Data Harmonization Working Group, the Data and Resources Core will develop and disseminate a ‘users guide’ to essential data infrastructure for deprescribing studies that use electronic health data. Development will be led by Core leaders Drs. Bayliss and Dublin with input from the Data Harmonization Working Group.