Update from the National Marrow Donor Program

1. Update from the National Marrow Donor Program 2013 Hematopoietic Stem Cell Transplant Advanced Practice Providers Conference Eneida R. Nemecek, MD, MBA September 12, 2013 Financial Disclosure – None Speaker is a member of the NMDP Board of Directors

2. System Capacity Initiative Description • Analysis of the U.S. health care system’s capacity to support a 2- to 3-fold increase in patients needing transplant by 2020* • System Capacity Initiative • Collaboration by representatives of all stakeholders of HCT • Recommendations and solutions for issues affecting the delivery of HCT * Analysis by NMDP and CIBMTR estimates a need of 10,000 transplants based on current indications in patients up to age 60. 2

3. Transplant Activity in the U.S.1980-2010 Transplants Pasquini MC, Wang Z. Current use and outcome of hematopoietic stem cell transplantation: CIBMTR Summary Slides, 2011.

4. NMDP Transplants Facilitated to Date Number of Transplants 4

5. . The Need • By applying the optimal transplant rate to the U.S. population, the need for allogeneic (related and unrelated) transplant is 18,000 per year. • Related – 5,500 per year • Unrelated – 12,500 per year 5

6. Population Growth: 2000 to 2020 U.S. Census Bureau

7. Increasing indications and increasing age

8. Improved survival of older allogeneic HCT recipients Kurosawa et al. BBMT 2011, 17:401-411

9. The call for a diverse workforce

10. Goals of SCI Assess current system capacity challenges and make recommendations to support growth: • Define and prioritize initiatives to meet human resource and infrastructure demands • Number and type of clinicians • Facility capacity • Financial support needed • Explore novel models for delivery of care to improve efficiency and effectiveness • Identify capacity issues that may limit access to HCT for diverse and underserved populations 10

11. System Capacity Initiative Program Organization and Participants

12. Professional Organizations and Stakeholder Engagement

13. System Capacity Initiative Program Schema Year 4: A Workforce Summit is being planned for Tuesday, November 19, 2013.

14. Common Findings from Workforce Groups • Inadequate number of providers • Lack of awareness among those in training of transplant as a career option • Reduction over time of exposure to transplant as training priorities change and the complexity of transplant care increases • Large variation in the membership and use of the care team between centers • Lack of benchmarks on effective and efficient use of workforce

15. Common Recommendations • Early exposure to transplant in training • Clinicians and researchers should convey the positive aspects of the profession to trainees • Diverse exposure to outpatient as well as inpatient care • Optimal use of each professional group on the multidisciplinary transplant team • Promoting the multi-disciplinary nature of the transplant team

16. Common Recommendations • Retention issues • Compensation/benefits/burnout/compassion fatigue • Work/life balance • Efficiency/effectiveness • Use of benchmarks to assess work effort to compare to other centers and other specialties

17. Advanced Practice Professionals

18. NMDP – NP/PA SCI Working Group • Monthly conference calls • SCI Steering Committee and Working Groups met annually at 1½ day symposia to present and evaluate recommendations from each group • Symposium 1 – Chicago 2010 • Symposium 2 – Minneapolis 2011 • Symposium 3 – Minneapolis 2012 • Symposium 4 – Minneapolis 2013 (Nov 19) To view presentations, more information: http://marrow.org/HD/SCI/SCI_Symposia.aspx

19. NMDP – NP/PA SCI WG Year 1 Summary • Survey • Pilot in NP/PA school • Needs assessment of NP/PA – 2011 Tandem • Began to assemble smaller working groups

20. Year 1 Survey • 224 NP/PA (45% response rate)

21. Year 1 NP/PA NMDP WGSurvey Highlights • Data Highlights • Full time  97% work more than 40 hrs per week • 74% have less than 10% non-clinical time • research, committee, education, administrative • 69% of NP/PA schools have no HemOnc/BMT course • 48% NP/PA transferred from other positions to HCT

22. Year 1 NP/PA NMDP WGSurvey Highlights • Job satisfaction & retention • 41% will/might reduce hours • 30% will/think of changing jobs • 24% are thinking about a career change • 79% feel BMT MDs are interested in having them perform higher roles in patient care, and that they are not working to top of their license

23. Year 1 NP/PA NMDP WGSurvey Highlights

24. Year 1 NP/PA NMDP WGSurvey Highlights • Top most satisfying aspect of working in HCT • Intellectual stimulation of patient care • Emotional gratification of patient care • Intellectual stimulation of research/new discovery • Top least satisfying aspect of position • Job related stress/work demands • Burn out related to sick and dying patients • Excessive work hours • Insufficient salary Both mirror MD survey responses

25. Year 1 NP/PA - Needs assessment at Tandem 2011 Needs assessment completed for NPs/PAs at Tandem • 70% of attendees at Tandem were interested in opportunities for NPs/PAs to network outside of their own institution • 100% felt the profession would benefit from creating a national HCT SIG through ASBMT

26. Year 1 Education Pilot NP/PA schools HCT 101 Lecture in NP/PA schools • 1st and 2nd year students received HCT 101 lecture • Students were surveyed prior and post lecture • Regardless of year in schooling, were more likely to pursue a career in HCT after the lecture • Impact greater on first year students • Generated interest in shadowing or clinical rotations

27. NMDP NP/PA - Year 2 Summary • Sub-groups formed within NMDP NP/PA WG to address following needs: • Education • Compensation/benefits • Collaboration with NMDP and other groups • Defining the role of NP/PA in HCT • Work models for NPs/PAs

28. Optimal Work Model and Role Definition Documents Designed to support: • Current NPs/PAs in HCT practice • NP/PA students interested in a career • Recruitment of currently practicing PAs/NPs • HCT MDs, program directors and administrators in the utilization of NPs/PAs

29. Recommendations for Optimal Work Models for Physician Assistants and Nurse Practitioners Working in Hematopoietic Cell Transplantation • Recommendations on: • Work hours / schedule • Multidisciplinary support staff • Patient care models • Salary / compensation • Professional development and support

30. Role of the Physician Assistant/Nurse Practitioner in Stem Cell Transplantation Provide quality care to BMT patients in conjunction with the patient’s physician and care team under the guidelines established by their institutions, ASBMT, NMDP and current best practices in medicine

31. Care Delivery – NP/PA’s Outpatient Role Center Size (HCT/year) 1-35 HCT N=18 36-75 HCT N=18 76-130 HCT N=17 131-190 HCT N=14 >190 HCT N=18 ??? NP/PA’s role in outpatient clinic, % No NP/PA’s in outpatient clinic See patients independently See patients and staff with MD Courtesy of Dr. NavneetMajhail

32. Advanced Practice Professionals Top Initiatives • Creation and structuring of a more in-depth ASBMT APP Steering Committee organizational structure • Dedicated web page for APPs through the ASBMT website; identifying, defining and developing content for the site • Continuing outreach to students and APPs working in other fields, to increase awareness of HCT with the intent to positively impact recruitment and retention

33. Expand the ASBMT APP Steering Committee • Created 4 new working groups • Education • Research • Website development • Liaison positions • APAO • APHON • ONS

34. ASBMT NP/PA Org Structure • ONS - Oncology Nursing Society • APAO - Association of PAs in Oncology • APHON - Association of Pediatric Hematology/Oncology Nursing

35. Development of a webpage for APPs Content development in process in the following areas: • Education • APP guidelines, HCT 101, ASBMT COE PIMs, etc. • Students/careers • Job search, student rotations, link to graduate programs, APP role in HCT document, links to education • Employer focused • Work model recommendations, discussion forum • APP - Who we are • Discussion/Forum • Bi-annual newsletter, professional practice issues, blogs, etc. • Membership • Research opportunities

36. Educational Outreach Current • Collaborating with ASBMT Committee on Education (COE) • NP/PA Training Guidelines, Tandem Meeting • Tandem 2013 – first NP/PA abstract session • Research working group formed (QI and clinical projects) • HCT 101 Lecture Video – Dr. Cutler • Website development and links within ASBMT/NMDP • NMDP Clinical Lecture Series Future • Educational efforts with APAO, ONS and APHON partnership • NP/PA school collaboration for teaching • Brochure to NP/PA schools with access to HCT 101/other lectures • Clinical rotations – learn from existing and create more • Consider regional conferences and educational opportunities outside BMT Tandem Meetings

37. Training Guidelines American Society of Blood and Marrow Transplantation (ASBMT):Guidelines for Training in Hematopoietic Progenitor Cell Transplantation for Nurse Practitioners and Physician Assistants (NPs/PAs)

38. Collaborations –internal and external • Formal liaison positions created with national NP/PA organizations • Oncology Nursing Society (ONS) • Association of PAs in Oncology (APAO) • Association of Pediatric Hematology/Oncology Nursing (APHON) • ASBMT Committee on Education – NP/PA liaison • Working Committees/Task Force – NP/PA reps

39. Challenges • We need your help • Join the efforts of the working group • Mentoring • SIG Committees • Education: Penetrate NP/PA schools early Engage multidisciplinary learners • We need more data • Participate in surveys • Defining optimal work models and how to support changes in practice so NPs/PAs can work at “top of license” • We can create demand….are centers ready to increase supply? • BMT supply/demand and ACGME regulatory changes • Facility constraints

40. What can you do? • Join ASBMT if you are not a member • 182 NPs/PAs registered at Tandem 2013 • 49 NP/PA SIG members total • Volunteer to join a working group • Help spread the word to your colleagues

41. NMDP SCI Working Group Members • Members • Susan M. Burroughs, PA-C • Gilbert Ciocci, NSN, FNP-BC • Theresa Donohue, PA • Julia Gourde, RN, CNP • Amy Joyce, MSN, ANP, AOCN • Shelly Mentzer, MMS, PA-C • JerelynMoffet, CPNP • Eneida Nemecek, MD, MBA • Nancy Shreve, NP, MS, FNP • Susan Slater, MN, FNP-BC • Kristin Sterling, APRN-BC • Cindy Treviño, ANP-BC, AOCN • Chair • Deborah Yolin Raley, PA-C • Vice Chair • Erin Medoff, APRN • NMDP Lead Staff • Jason Dehn, MPH, CHTC • Megan Cooper, BS, CHTC • Joan Jarosh (admin.) • Special Thanks • Paula Cuthrell NP • Colleen Brown PA • Melissa Cochran NP • Thomas Joseph ASBMT

42. ASBMT Steering Committee APP SIG 2013 • Paula Cuthrell, CNP, CFNP, Chair • Michael Wilson, PA-C, Past-Chair • Susan Burroughs PA-C, Chair-elect • Colleen Brown PA-C • Lori Burton, MSN, CPNP • William Levy, PA-C • Jackie Lagerlof, MS, PA-C • Ashley Miller, RN, MSN, FNP-BC, AOCNP, MPH • Carina Moravec, ARNP • Amy Witter, PA-C • Deborah Yolin-Raley, PA-C • Amy Klingler, PA-C, ex-officio

43. Questions or Comments Email:SystemCapacity@nmdp.org