The Data Advisory Committee (DAC) is an operating committee of the OPTN. The DAC is charged with regular review of the OPTN Data Collection Principles and ensuring that data collection activities are in alignment with these principles. The DAC is charged with overseeing all recommendations to the Board of Directors regarding the collection of official OPTN data that are pertinent to the operation of the OPTN, necessary for the development of evidence-based OPTN policies, and to support analytic work undertaken by the OPTN Contractor or the SRTR contractor to perform the tasks required under the respective contracts, the Final Rule, and NOTA. The DAC is charged with making recommendations to the Board of Directors to revise the OPTN Data Collection Principles as needed, to update OPTN data submission and release policies, to collaborate with other OPTN committees on additions, modifications, and deletions of the data elements collected by the OPTN, to improve completeness, accuracy, and timeliness of data collected, to enhance the official OPTN data with elements from other data sources, and any other recommendations and efficiencies for improving collection of official OPTN data.

Principles for Data Collection

Institutional members must provide sufficient data to OPTN to allow it to:

• Develop transplant, donation, and allocation policies
• Determine if Institutional Members are complying with policy
• Determine Member-specific performance
• Ensure patient safety when no alternative sources of data exist
• Fulfill the requirements of the OPTN Final Rule

Monitoring and data reports

Department of Health and Human Services data directive

The Health Resources and Services Administration (HRSA) announced a directive for the OPTN to collect additional data on patients prior to waitlist registration and referrals of potential deceased donors to organ procurement organizations (OPOs). The OPTN Final Rule allows federal authorization of additional data collection to promote the efficiency of the OPTN.

Members of the OPTN Data Advisory Committee (DAC) and two OPTN workgroups have offered recommendations to HRSA regarding this initiative. The workgroups are:

• The OPTN Data Advisory Committee Pre-Waitlist Data Collection Workgroup. Reports from the workgroup meetings are in the Meeting Summaries section below.
• The OPTN Membership and Professional Standards Committee (MPSC) OPO Performance Monitoring Enhancement Workgroup. Reports from the workgroup meetings can be found on the MPSC committee page.

Below are supporting materials, including the feedback DAC presented to HRSA on January 31, 2024, and the individual workgroup recommendations.

• OPTN Data Advisory Committee feedback to HRSA on new data collection for both pre-waitlist patients and ventilated referrals
• Pre-Waitlist Data Collection Workgroup feedback on new pre-waitlist data collection
• OPO Performance Monitoring Enhancement Workgroup feedback on new ventilated referral data collection

The proposed new data collection is intended for inclusion in a Federal Register notice of an Information Request Package (ICR) for review by the federal Office of Management and Budget (OMB). This will include draft forms and will seek public comment on the package for a 60-day period. The OPTN will prepare a response to the proposal with input from relevant stakeholder committees. For more information on the OMB review and approval process, see an overview presentation that was shared with the Data Advisory Committee.

Chair

• Dr. Sumit Mohan
• NY Presbyterian Hospital/Columbia Univ. Medical Center

Vice Chair

• Dr. Jesse Schold
• University of Colorado Hospital/Health Science Center

Liaison

• Eric Messick
• UNOS Employee
• eric.messick@unos.org