Data Collection to Assess Socioeconomic Status and Access to Transplant

Proposal Overview

Status: Committee Review

Sponsoring Committee: Minority Affairs

Strategic Goal: Provide equity in access to transplants

Read the proposal (PDF; 01/2020)

View the Board Briefing Paper (PDF; 6/2020)

Contact: Ross Walton

At a glance

What is current policy and why change it?

The OPTN currently collects limited information that pertains to a transplant candidate’s socioeconomic status (SES). Collecting detailed socioeconomic related data will inform the OPTN and the public. (e.g. assessment of the potential impact candidates’ SES could have on access to organ transplantation).

What’s the proposal?

• Transplant hospital staff would be responsible for asking candidates at the time of registration on the waitlist their annual household income and household size.
• These two data points would be entered on the patient’s Transplant Candidate Registration (TCR) form.
  • At the time of listing, every transplant candidate has a TCR form entered into UNet℠, the OPTN computer system.
• This data will inform OPTN Committees and the community on the impact of a candidate’s socio-economic status.

What’s the anticipated impact of this change?

• What it’s expected to do
• Transplant hospitals would develop a process for collecting annual household income and household size from candidates and enter the data in the TCR form.
• This data will inform OPTN Committees and the community on the impact of a candidate’s socio-economic status.

• What it won’t do
  • Candidates access to transplant will not be impacted by providing this information.
    • The two data points are for informational purposes in future analyses by OPTN Committees and the community.
  • Provide any data on patients who were not referred to the waiting list.

Themes to consider

• Best types of data to measure SES
• Barriers to collecting data
• Timeline to implement required collection of data

Terms you need to know

• Annual household income: total income (in US dollars) for all persons living within the transplant candidate’s home.
• Household size: the total number of people living in the same household as the transplant candidate who are dependent on the household income.
• Transplant Candidate Registration (TCR) data collection instrument: The data collection instrument completed and submitted by the transplant hospital when a patient is added to the waiting list or when living donor feedback is completed for patients who are not listed. The form contains information on candidate demographics, previous transplants, payment, clinical information at time of listing and organ specific medical factors.
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