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Frequently asked questions regarding information technology design, funding–Updated 5/13

Frequently asked questions regarding information technology design, funding–Updated 5/13

UNOS has received a number of questions regarding recent discussion of UNOS’ ongoing refinement of information technology (IT) systems and the likely need for additional funding to complete mission-critical work and enable future system enhancements.  Over the next few months, UNOS will feature commonly asked questions along with answers.  Below is an updated version of our first installment; other questions will be addressed in future editions.

Who makes the funding decisions? 

The OPTN/UNOS Board of Directors, elected by the transplant community, makes all funding decisions, approving the budget and the registration fee.  The OPTN registration fee must also be approved by the Secretary of HHS.  The board must consider both the financial impact on the community and what it takes for UNOS to deliver the services the community wants and needs.

Why is there an urgent need to upgrade IT systems?

Many key components of OPTN and UNOS operations depend on information technology.  These include DonorNet®, Tiedi®, Waitlist, Match algorithms, the Organ Center, member data requests, the web sites, data analysis for policy development, the TAC member staffing survey and RFI.  All of these systems require ongoing maintenance and development so that they remain:

  • Continuously available and accurate in every match performed
  • Able to support and communicate with many different platforms
  • Able to be reprogrammed quickly to adapt to new policies
  • Highly secure from outside cyber threats
  • Compliant with the same requirements and standards that apply to any agency of the federal government.

Is this a recent issue?  If not, why has it taken so much time to make members aware of it?

Four years ago, UNOS began a major upgrade of its aging IT systems to improve its responsiveness to members’ needs and ensure we continue to meet new requirements.  This was a major undertaking.  The OPTN/UNOS Board of Directors knew it would require significant extra funding and approved a surcharge on patient registrations.  In order to expedite the project, implementation of a number of Board-approved actions were put on hold until the upgrades could be completed.

However, funding and staff to cover all projects simultaneously was inadequate.  The timeline of the upgrade project expanded, reflecting both new security requirements that needed to be met and additional features identified during project design.  The Board of Directors also decided that UNOS should resume implementing some high-priority projects earlier placed on hold.

While these general issues have been a concern for some time, the review process undertaken by the Information Technology Advisory Committee (described below) has identified the scope of these issues within the last few months.

What is the ITAC and why was it formed?

The Information Technology Advisory Committee (ITAC) was formed in 2012 to provide objective recommendations to the OPTN/UNOS Board of Directors on the status and needs of UNOS’ IT infrastructure.  Its membership includes three board members with experience and familiarity with IT in general and/or the OPTN data system in particular, as well as three outside advisors with expert knowledge and leadership credentials in healthcare data systems and IT development.

Why does a fee increase seem like the only option?  Can’t UNOS address operational efficiency as well?

The ITAC, and the Board, are still investigating a variety of funding mechanisms and ways to prioritize work most efficiently.   However, there is broad agreement that the resources provided are simply not enough to deliver the number of projects already approved or the upgrades necessary for efficient future operation.   Part of the ITAC review has been to answer the specific question of whether needed upgrades could be completed in the short term solely by prioritizing the work differently or applying different organization to UNOS’ IT staff.  The ITAC has found that neither of these alternatives will by themselves address the ongoing needs in a reasonable timeline.

Over several years in the past, annual increases in registration volumes have enabled UNOS to minimize registration fee increases over time.  More recently, the increase in registrations has slowed and has not been enough to cover additional needs.  Increasing the fee per registration is the only immediate option for addressing the large mismatch between required work and available resources.

To improve operational efficiency, UNOS has undergone some restructuring, including some personnel changes.  Additionally, the Board is overseeing the creation of financial metrics and dashboards, which the Board and the Finance Committee will monitor to ensure that UNOS is meeting its OPTN contractual obligations within budget. UNOS leadership is committed to keeping expenses as low as possible while meeting the requirements of the OPTN contract and reasonable needs of the transplant community.

How much is the fee increase likely to be?

That has yet to be determined, in part because the new OPTN contract will begin in July.  A final, total fee can’t be calculated until the new contract requirements are negotiated with HRSA, which may also affect expenses.  A current estimate of the IT component of a fee increase is likely about $200 per registration, but that is only an estimate.   The OPTN/UNOS Board of Directors, representing all facets of the donation and transplantation community, will meet in June to consider the new budget and fee, which will likely take effect with the new fiscal year.

Could the IT portion of the fee decrease once the backlog is addressed?
The IT component of the fee might decrease in two or three fiscal years as current work is completed, but it would probably remain at a higher baseline than it is now.  The higher baseline would allow UNOS to continue ongoing upgrades and improvements without having to repeat this process a few years from now.

How do you plan to keep members informed?

Since the initial discussion in November, where the ITAC first presented findings to the Board of Directors, UNOS has been communicating about the issue and status of discussion in a number of different venues.  We will continue to provide information in these same channels as decisions are made.  The venues include:

  • The monthly Transplant Pro e-newsletter and website
  • UNOS, bimonthly magazine, Update
  • A broadcast email to transplant administrators and program directors from the OPTN/UNOS president
  • The ASTS president’s monthly email to members
  • An upcoming issue of the quarterly ASTS e-newsletter, Chimera
  • The transplant administrators listserv
  • The transplant coordinators listserv
  • ITAC member discussion with the OPTN/UNOS Transplant Administrators Committee
  • Leadership updates at regional meetings are beginning
  • The OPTN/UNOS president’s update at the Transplant Management Forum.


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