Mid Atlantic Region III Annual Meeting April 12-13, 2018

Transcription

1 Mid Atlantic Region III Annual Meeting April 12-13, 2018

2 Planning Committee Charleston Area HTC West Virginia University HTC Well done, WV HTCs Thank you!

3 Special Thanks Kathaleen Schnur Katherine Bush Stepping in to support social work activities for the meeting. Mary Louise Mattia Supporting Data Coordinator Break Out

4 Presentations Available Slides and the agenda are posted to the Mid- Atlantic Region III website: bitly.com/region3content18 Reimbursement materials for Master List attendees are also posted here

5 Exhibitor Evaluation Exhibitors greatly support Regional Meeting; we appreciate their support 2017 Exhibitor Survey 99% rated the event Very Good or Excellent Consistent feedback about: Lack of display space Insufficient time to meet and interact with attendees Modifications this year change of exhibit location, longer break times Please take time to stop by the exhibits

6 Consumer Scholarship: WELCOME! Congratulations! Thank you for joining us! Kristofer Mill

7 Physician Scholarship Program I thought it was an awesome experience. Federally Funded Hemophilia Treatment Centers Serving Delaware, the District of Columbia, Maryland, Pennsylvania, Virginia and West Virginia

8 Federally Funded Hemophilia Treatment Centers in: the District of Columbia, Maryland, Pennsylvania, Virginia and West Virginia Attention Residents/Fellows in Internal Medicine & Peds WHY: Introduce residents/fellows to the regional network of hemophilia care, enhance your education in the field of bleeding disorders and network with experts in the field. WHAT: Expense paid trip travel, meals, and hotel expenses related to the two-day Mid- Atlantic Region III federally funded Hemophilia Treatment Centers Annual Meeting WHEN: Thursday, April 12, 2018 (12PM 8 PM) & Friday, April 13, 2018 (8AM-12:30 PM). WHERE: Hilton Old Town Alexandria, Alexandria, VA HOW: Contact your Chief Resident or Hemophilia Treatment Center Medical Director for application materials. A letter of recommendation from your Chief Resident or HTC Director must accompany your application. Applications due February 23, AGENDA ITEMS: Physician break-out session; Sports Medicine/Physical Activities for Patients with Bleeding Disorders, New Aspects of the Laboratory Diagnosis of VWD, Physical Therapy and Pain Management, Regional Update, QI panel, a Research Symposium and a Thursday evening Scholarship Dinner with other recipients and physicians practicing in the field.

9 Survey Results 72 unique scholars from scholarships over 11 years 9 received twice Two three times 54 s delivered 14 responded (26% response rate) 71% currently practicing hematologists 10/14 practicing in MAR/Region III

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11 Do you care for patients with bleeding or clotting disorders? Yes: 13 No: 1

12 What impact did your participation as a Mid-Atlantic Region III Physician Scholar have on your choice of specialty? *71.4% reported that participation as a MAR/Region III Physician Scholar had the highest impact on their choice of specialty

13 Scholar Comments It furthered my interest in hematology and my decision to pursue fellowship. I appreciated the dinner with faculty as a networking and mentorship opportunity. The most valued part of the program was talking with faculty from HTCs. Their career advice was helpful in beginning to network with my current colleagues in HTCs in the region. Engagement beyond the conference would be useful. Really enjoyed the conference. Going to dinner and talking shop with scholars and mentors was very helpful as well. a great opportunity to establish contacts in Hematology. Perhaps relationships could be fostered by encouraging a mentor-mentee relationship amenable. It was crucial sitting at dinner with Dr. Kessler. Really changed my career direction. This is a really good thing that the region does."

14 2018 Physician Scholars Committee Chair: Cliff Takemoto 1. Sally Azer (CHKD) 2. Allison Close (HCWP) 3. Shireen Ganapathi (HCWP) 4. Amita Ghuman (HCWP) 5. Megan Lyle (VCU) 6. Meghan McCormick (HCWP) 7. Allyson Pishko (PCHP) 8. Chris Pizzola (HCCP) 9. Margarita Ramos (CNMC) 10. Sanam Shahid (CNMC) 11.Madhav Vissa (University of Pittsburgh)

15 Physician Scholar Dinner Mentor dinner rated by scholars as very valuable REC MDs and HTC Directors attend. See you there tonight at Il Porto Restaurant 121 King Street or meet Dr. Takimoto in the lobby at 5:45

16 Awards and Recognitions Mark Gilgannon (UVA): NHF Physical Therapist of the Year Caroline Agnew (St. Chris): 2017 ATHN Care Award John Christian Barrett (VCU): 2017 Leadership in Graduate Medical Education Award Char Witmer (CHOP): Alan R. Cohen Master Clinician Award in 2017

17 Jennifer Meldau: AANC Certified Nurse of the Year New ANCC Board Certified Hemostasis Nurses: - Dyanne Morris - Susan Yeck - Sue Gallagher - Marilyn Blumenstein

18 Farewell Gary Woods: Good luck in your new endeavor

19 Mid-Atlantic Region III Demographics 2017 Hemophilia Thrombophilia Data Set

20 2017 HTDS Patients by Diagnosis 3495 Bleeding Disorder Patients 790 Thrombosis Patients reported

21 Region III Enrollment Population Profile All patients; minimal data Unique patients in 2017: 2,395 Total patients since 2012 = 19,402 Registry Significant data on fewer patients Total Enrollment since 2013: 2,865 New patients in 2016/17 grant year: 349 Total forms in grant year: 1,007

22 Registry Enrollment Grant Year Regional Target: 20% of active patients Progress: 152% of annual goal Fifth highest region in U.S. Were # 3 last year, but we ll try harder Regional range: 22% - 47% Regional Leaders: #1: CAMC: 47% #2: GTU: 40% #3: WVU: 35% Congratulations!

23 CDC goals: CDC Performance Measures 2018 Inhibitor screening and dissemination of screening methods to HTCs and labs Enroll 50% of babies (0-24 mos.) in Registry with validated inhibitor screening Increase best practices for prevention of inhibitors and other complications Focus on inhibitors and joint disease More to come: ATHN will increase communication with HTCs

24 CDC Registry Priorities Main diagnosis priorities: F VIII deficiency F IX deficiency Type 3 VWD Four priority categories: Inhibitors Treatment Bleeding events Mortality

25 Registry Monitoring Future evaluation of progress of R III HTCs Consider priority enrollment, not only numbers of patients Focus first on hemophilia and type 3 VWD Submit throughout year * Registry Protocol: within 30 days of visit Not a due date (rolling entry) Totals reviewed by Core regularly Don t wait until end of year to enter data

26 MCHB Year one of five year grant Budget cut by 50%, then mostly restored Government budget still not established for the current year Some budget changes necessary THANK YOU for your patience; we received NO complaints! Three main areas of focus Transition Family Engagement Medical Home Model Continuing renewal and Progress Report submitted 3/13/18 Copies available to all HTCs upon request

27 Medical Home HTCs not expected to be Medical Home Expected to facilitate Medical Home/Primary Care Provider (pcp) Report progress on: Discuss need for pcp with patients/families Describe methods used to address issue publications, trainings, technical assistance, QI % of population with direct link to Medical Home/pcp

28 Metrics: Family Engagement Are we promoting Family Engagement? Technical assistance, trainings Outreach/education EHR portals Patient surveys Patient Choice Policy Family Advisory Councils Community advocacy (NHF chapters) % of target population with meaningful roles on community/state/regional/national level

29 Family Engagement MAR Consumer Break Out 2017 Survey of 11 consumers at annual meeting 5 aware that HTC has Patient Advisory Committee Suggested that HTCs promote PAC Recognize as opportunity to promote engagement Patient portals 10/11 did not know if HTC/hospital had portal Access to patient portal/ increased communication would have positive effect on patient experience

30 2017 Consumer Survey Not all HTCs have direct line for patient calls Suggest written information about reaching staff after hours Consumers unfamiliar with regional activities Don t know how they benefit from projects, research and programs Suggest literature ( Did you Know cards) for HTCs to display to increase awareness and engagement Further discussion at Break out today Report on 4/13/2018

31 Transition Essential for pediatric and adult centers Updated MAR/RIII materials for each HTC at registration Transition tools: Regional materials ASH Transition Readiness Got Transition.org Partners PRN

32 Quality Improvement QI reporting template for HTCs available June 2018 National QI effort Patient Experience Survey measures success Need increased participation from 14 HTCs One HTC reports no patients in age range NHPCC to provide trainings and materials By 5/2022, 75% of HTCs required to have done QI on at least, one of the 3 areas of focus: Medical Home Patient Engagement Transition

33 Quality Improvement NHPCC QI committee Regional members Nate Hagstrom (chair), Jan Kuhn, Sue Cutter, Regina Butler Evaluating priorities and methodology Regional coaches will provide TA as needed: Judith Kadosh Lynda Dattilio MAR QI workshop 4/13/18 14/15 HTCs represented

34 Patient Experience Survey 2017 MAR Results Patients from 11/15 HTCs responded 166 completed responses from MAR 42 % from one HTC! 8/15 HTCs had 0-3 responses! All but one of the MAR HTCs have patients in age group HTC numbers will be sent to each HTC Increased participation critical to meet grant requirements

35 Patient Experience Survey Results for MAR 94% report discussion with provider about care as an adult Up from 91% in % report being encouraged to become independent in their health care. Up from 96% in 2016

36 2017 Monitoring Survey Denial of type of factor by insurance 2017: : : : 0 12 languages spoken by MAR patients Spanish : 12 sites Arabic: 7 sites Mandarin: 4 sites Vietnamese: 4 sites Chinese: 5 sites Sign Language: 4 sites French: 3 sites Russian: 1 site Cantonese: 1 Other: 4 (Pashto, Turkish, Moroccan, Portuguese)

37 Program Income Continued funding critical to success of HTCs and the region Regional FTEs supported in 2017 by 340B: > 58 HTC staff positions funded by 340 B Program Income Includes regional core staff Review individual FRP Report Track expenses Identify challenges

38 Program Income for Research Proposals accepted twice a year Region has specific guidelines for approval Total active projects: 8 Applications accepted twice/year Annual reports required by REC

39 340B Oversight Annual Recertification Completed for 2018 Future of 340 B Program Medicare and Medicaid reduction in discount Current bills before U.S. Congress for DSH and Children s Hospitals May impact HTCs in long term Novel therapeutics may reduce income Recommend careful monitoring, projections and budgets.

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41 Regional Executive Committee Cliff Takemoto 4 Physicians Gary Woods (leaving) Douglass Drelich Colleen Druzgal 2 Nurses 2 Social Workers Margy Sennett Donna Arden Megan Songer Sue Cutter 1 Physical Therapist Luke Smith Janet Barone 4 Consumers Regional Director Regional Coordinator Steven Lampe Linda Price (Ad hoc) Mike Clancey Regina Butler Lisa Maiale-Howell

42 REC Physician position to be determined at Break Out Session today Standards of Care Committee: seeking new chair Stan Oliveira agreed to continue to coordinate study

43 Questions/Suggestions

44 2019Annual Meeting March 14-15, 2019 Alexandria, VA Planning Committee: Maryland and D.C. HTCs