Membership and Professional Standards Committee Fall 2012

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Proposal to Change the OPTN/UNOS Bylaws to Better Define Notification Requirements for Periods of Functional Inactivity. Membership and Professional Standards Committee Fall 2012. The Problem. Bylaws do not clearly outline Member actions for functional inactivity, including:
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Proposal to Change the OPTN/UNOS Bylaws to Better Define Notification Requirements for Periods of Functional InactivityMembership and Professional Standards CommitteeFall 2012The Problem
  • Bylaws do not clearly outline Member actions for functional inactivity, including:
  • Periods of waiting list inactivation
  • Cessation of a transplant program component (e.g. Living Donor/adult-peds)
  • Since the Bylaws do not specifically address notification content or timing, programs have been inconsistent in how they notify patients
  • Goal of the Proposal
  • Detailed, timely patient information regarding periods when organ offers will not be made on their behalf
  • More guidance for MPSC to monitor functional inactivity
  • Goal of the Proposal (cont.)
  • Clearly define Member responsibilities:
  • Clarify patient notification content and timing requirements for periods of waiting list inactivation in UNetsm
  • Specify Member actions for notifying patients when a program voluntarily ceases performing a specific type of transplant
  • How the Proposal will Achieve its Goal WL Inactivation
  • Current bylaw requires programs to provide written notice to potential candidates and candidates of waiting list inactivity
  • Proposed modifications: waiting list inactivity notifications must contain the following:
  • Reason
  • Expected length
  • Explanation organs cannot be accepted during this time
  • How the Proposal will Achieve its Goal WL Inactivation II
  • Notification content requirements (cont):
  • Options available to the candidates, including multiple listing/transfer
  • Mechanism for notifying candidates when WL is reactivated or if the expected length of inactivation is extended
  • Copy of Patient Information Letter
  • Cumulative notice must include dates for each instance of WL inactivation
  • How the Proposal will Achieve its Goal WL Inactivation III
  • When to send notifications:
  • How the Proposal will Achieve its Goal WL Inactivation IV
  • Example: Program reaching cumulative waiting list inactivation of 28 days or more in one 365 day Period
  • How the Proposal will Achieve its GoalProgram Component Cessation
  • Members must:
  • Notify all patients affected by the cessation at least 30 days prior to, but no later than 7 days after cessation
  • How the Proposal will Achieve its GoalProgram Component Cessation (cont.)
  • Patient notifications must include:
  • Reason for cessation
  • Explanation that organs cannot be accepted on the candidate’s behalf during period of cessation
  • Patient options
  • Phone number for the transplant program’s administrative office
  • Impact
  • 12 programs met WL inactivation thresholds in 2011
  • 4 programs ceased a component in 2011
  • Proposed requirements could result in additional financial burden to send notifications, increase in patient calls/questions, submission of responses to MPSC inquiries
  • Expected Implementation
  • Anticipated Date of Board Consideration: June 2013
  • Anticipated Effective Date:
  • September 1, 2013What Members Will Need to Do
  • WL inactivation:
  • Include required elements in patient notifications
  • Send within specified timeframe
  • Cessation:
  • Include all required elements
  • Send within specified timeframes
  • MPSC will continue to monitor periods of WL inactivation and will request confirmation that you notified patients
  • Specific Requests for Comment
  • Is the term ‘affected patients’ clear enough?
  • Should adult candidates be notified of the cessation of a pediatric component and vice-versa?
  • Should transplant recipients be notified of the cessation of living donor, deceased donor, or age-specific components?
  • Should there be different patient notification timelines for living versus deceased donor program components?
  • Proposed Bylaw language on pgs. 10-11 of public comment proposal document
  • Questions? MPSC Chair: Kenneth Andreoni, MDMPSC Vice Chair: Alan Reed, MDStaff LiaisonsHeather Neil804-782-4747heather.neil@unos.orgSally Aungier804-782-4812sally.aungier@unos.org
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