OPTN Contract Modification - Task 17 Advisory Committee on Organ Transplantation November 17, 2015 John Rosendale Senior Research Scientist United Network for Organ Sharing

Task 17  Modification to the OPTN contract  Conduct a study examining the feasibility of the OPTN collecting in- hospital ventilated death referral data.  Principal Investigator – John Rosendale  Study Period – October 1, 2015 – September 30, 2016

Task 17 (continue)  Research Study Questions 1. What is the feasibility to standardize the definitions needed to collect in hospital ventilated deaths (such as ventilated death) across all 58 OPOs? 2. What is the availability of the patient level data across the 58 OPOs? 3. What is the level of effort required to collect these data by the OPOs and the OPTN? 4. How verifiable/auditable are the data submitted by the OPOs? 5. What type of data collection tools could be developed to efficiently facilitate the collection of these data?

4 Philosophy  Identify optimal  Works towards optimal  Identify and work with current realities

5 Establish Think Tank  Task 17 Think Tank – a body of experts providing advice and ideas to help inform the decisions made to successfully complete Task 17  Charlie Alexander  Jean Davis  Alex Glazier  Susan Gunderson  Rick Hasz  Lori Markham  David Marshman  Kevin O’Connor  Jeff Orlowski  Jon Snyder  Sean Van Slyck

6 Steps along the way  Lessons learned from the work of the PINS group  Establish definitions  Determine data availability – current and future  Among 58 OPOs  External data sources  Donor hospitals  Refine definitions – short term/long term

7 Steps along the way (continue)  Data collection – Pilot OPOs  Analyze the data to inform the future of a nationwide and ongoing collection of these data  Explore data collection methods  From OPOs  From donor hospitals  Assess burden of data collection  For OPOs, OPTN, Donor Hospitals  Determine if the data collected could be validated/audited  Report findings to HRSA

8 Questions? UNOS Headquarters, Richmond, VA National Donor Memorial, Richmond, VA