Program-Specific Reports: Past, Present and Future. Where do we go from here?

Transcription

1 Program-Specific Reports: Past, Present and Future. Where do we go from here? American Society of Transplantation 2018 Cutting Edge of Transplantation February 9, 2018 Melissa A. Greenwald, M.D. CAPT U.S. Public Health Service Director, Division of Transplantation (DoT) Healthcare Systems Bureau (HSB) Health Resources and Services Administration (HRSA) U.S. Department of Health and Human Services

2 Continuous improvement of the PSRs Program-specific reports are required Desire by all stakeholders to move beyond one year patient and graft survival Always pitfalls to presenting any data Requires stakeholder engagement Data are collected and accessible if analyses aren t comprehensive and comprehensible, others may do analyses and publish those analyses 2

3 Audience Stakeholder-specific data presentation Different stakeholders need different information Patients deciding where to seek medical care for transplant needs Transplant centers self-improvement, benchmarking performance for self-awareness, allow for sharing best practices OPTN and donation/transplantation community informing policy development, considering system-wide improvements Varying levels of use and comprehension Best not to assume we know everything patients are interested in knowing need direct patient and family engagement in research and development 3

4 Data improvements Risk adjustment of outcomes analyses is necessary There are current gaps in risk adjustment that require improvement Need additional data, e.g. cardiac risk factors Additional analyses beyond the one year patient and graft survival Longer term outcomes Time to transplant Transplant rate Waiting list survival Waiting list mortality Transplant referrals 4

5 Process Improvements OPTN is currently working on redesigning OPTN committee structure and processes to improve stakeholder engagement SRTR provides many webinars, publishes in peer-reviewed journals, and gives presentations at national meetings Many seem unaware of ongoing work of SRTR research and analyses SRTR is accelerating efforts to provide public access to pre-transplant data, research on patient-centered data, improving data presentation, and longerterm post-transplant data Researchers aren t always able to be in sync with policy development cycles 5

6 Food for Thought To what extent does the transplantation community wish to anticipate needs of stakeholders who are not patients, OPOs, or transplant centers? Thoughts on providing data in a manner better suited to their needs (e.g., payers)? How to best optimize the what, how and where performance data are presented, in an audience-specific manner? Could there be community-led efforts to address data needs for improving risk adjustment (rather than reflexing to additional OPTN data collection)? What are data analyses could you use to improve performance where you work? What might be the role of dashboards in data presentation? (contain multiple data analyses together, easily comprehensible, and avoids appearance of a single rating?) What ways should ongoing SRTR research and analyses be presented to keep the community informed? How can research be developed that informs policy needs? 6

7 How can I get involved? Current opportunities Research such as outcomes research and research aimed at informing policy SRTR Visiting Committee OPTN Committees Participation in existing coalitions (e.g., Living Donor Coalition) Direct communication with HRSA, SRTR, OPTN How else can the community provide feedback into the system? OPTN data call requesting innovative ideas from the general community? Developing additional coalitions? Research coordinating body? 7

8 Contact Information Melissa Greenwald, M.D. Health Resources and Services Administration Director, Division of Transplantation 5600 Fishers Lane Room 8W63 Rockville, MD Phone: Web: hrsa.gov/about/organization/bureaus/hsb/ organdonor.gov optn.transplant.hrsa.gov srtr.transplant.hrsa.gov