I teach but you teach better

Transcription

1 I teach but you teach better Mark S. Korson, MD VMP Genetics

2 still WANT TO KNOW WHAT KEEPS ME UP AT NIGHT?

3 WELCOME TO MARK S METABOLIC NIGHTMARES

4 WELCOME TO MARK S METABOLIC NIGHTMARES Bad statistics ~140 practicing metabolic clinicians in the US* 50% of the clinics in North America are run by MDs who have no formal metabolic training** * Kim Chapman, MD personal communication ** Barbara Marriage, Abbott Nutrition personal communication

5 WELCOME TO MARK S METABOLIC NIGHTMARES Bad statistics >1250* new patients/year enter the community from metabolic newborn screening alone ~107 new patients/clinician on average since 2006 *2006 data MMWR Weekly Impact of Expanded Newborn Screening - United States, Sept 19, 2008 / 57(37):

6 WELCOME TO MARK S METABOLIC NIGHTMARES Disclaimers In 2006, only 22 diseases were screened in the US 1250 patients is from 2006; the number is higher now (more diseases, more babies) MMWR Weekly Impact of Expanded Newborn Screening - United States, Sept 19, 2008 / 57(37):

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8 WE AREN T REPLICATING ADEQUATELY!

9 WHAT TO DO? Approaches 1. Attract more metabolic health professionals into the field 2. Get more specialists to pick up the slack

10 1 - ATTRACT MORE HEALTH PROFESSIONALS Disadvantages Medical students are savvier than they used to be Metabolic medicine does not show well The promise of an interesting genetics career is no longer sufficient

11 1 - ATTRACT MORE HEALTH PROFESSIONALS Gathering momentum Develop recruitment strategies Need to incentivize consideration of a metabolic career Calling clinicians, patients/families, corporate colleagues to come forward!

12 1 - ATTRACT MORE HEALTH PROFESSIONALS What else YOU can do Tell your story!

13 2 - EDUCATE MORE SPECIALISTS What we know Doctors are afraid of biochemical genetics There is a lot of misinformation out there (uneducated mentors are teaching their trainees what they know!)

14 METABOLIC OUTREACH SERVICE Eastern Maine Medical Center Vermont Children s Hospital Baystate Medical Center, MA MA Dartmouth-Hitchcock Medical Center (NH) Maimonides Medical Center, NY NY Boston Med Center

15 2 - EDUCATE MORE SPECIALISTS What we know Doctors are afraid of biochemical genetics There is a lot of misinformation out there (uneducated mentors are teaching their trainees what they know!) It is hard to change the way a busy doctor s practices medicine

16 2 - EDUCATE MORE SPECIALISTS A new strategy Teach specialists but really focus the efforts on their trainees Remember that the intern/ resident s boss is really the senior resident, not the attending MD Trainees teach each other a lot Educated graduates will seed practices around the country

17 2 - EDUCATE MORE SPECIALISTS What YOU can do Tell your story!

18 WHY IS PATIENT TEACHING IMPORTANT?

19 SIR WILLIAM OSLER ( ) Medical education To study the phenomena of disease without books is to sail an uncharted sea, whilst to study books without patients is not to go to sea at all Medicine is learned by the bedside and not in the classroom

20 HOW TEACHING HAS CHANGED 1960s 2013 ~75% of clinical training occurred at the bedside ~8-19% due to the expansion of imaging, laboratory testing and technology Conference room presentations have replaced bedside teaching Peters M, Cate O. Persp Med Ed, 2014:3(2):76-88

21 BEDSIDE TEACHING Gold standard Learning about talking to patients Learning about medical ethics

22 A thorough history and physical examination can provide the correct diagnosis in 73% of cases, on average For certain problems over 90%. Sandler G. AM Heart J, 1980:180(6 Pt 1):

23 WHY DO PATIENTS ENJOY THE TEACHING ROLE? Reasons Teaching can directly help impact their/their child s care Patients develop a better understanding of their disease through teaching others Teaching promotes awareness about a (rare) disorder

24 YOU KNOW YOUR/YOUR CHILD S DIAGNOSIS BEST! Expert OK maybe You know the symptoms, the course, the progression Your now what has worked and what has not You likely know the research! You blend all the facts You cannot fully discern what is relevant or important from what is not

25 WHY IS PATIENT TEACHING POWERFUL?

26 BRINGING PATIENTS TO 1st YEAR BIOCHEMISTRY 2006

27 Patient Forums Brief introductory overview of the disease from a medical perspective Ellen, Fabry disease

28 Patient Forums Patients and parents share: Their diagnostic journey About living with the symptoms Their perspectives on therapy Their day-to-day challenges What doctors do right and what they do wrong Garrett, tyrosinemia type I

29 Patients don t talk about facts. They tell a story and people remember stories Alena, Maroteaux-Lamy syndrome

30 STORY-TELLING Neural coupling Mirroring Neurotransmitter release The listener can merge the story with his/her own experience to make it more meaningful An effective story enables the listener to live those events Emotional stories cause a release of dopamine à better and more accurate recall

31 WHAT PATIENTS PROVIDE TO PHYSICIANS General Specific And Information about a disease Information about a patient case The way to be a better health provider: Improve communication and caregiving skills Understand the patient perspective

32 WHAT ARE WE THINKING ABOUT? (this is where you come in)

33 OUR HYPOTHESES 1. A health professional is more likely to recognize a diagnosis if s/he has seen an affected patient before and heard his/her story.

34 RNE s RARE DISEASE DAY SPEAKER SERIES, 2018 Feb 26 Feb 27 Feb 28 May 9 May 23 Dartmouth-Hitchcock Med Ctr, NH Yale-New Haven Med Ctr, CT University of VT Med Ctr, VT Boston University GC Program, MA Brandeis University GC Program, MA Newton-Wellesley, Hospital, MA

35 RNE s RARE DISEASE DAY SPEAKER SERIES, 2018 Feb 26 Feb 27 Feb 28 May 9 May 23 Barth syndrome Erythropoietic protoporphyria Acute intermittent porphyria Fabry disease Barth syndrome Hurler disease (MPS type I)

36 RNE s RARE DISEASE DAY SPEAKER SERIES, 2019 Dartmouth-Hitchcock Med Ctr, NH Yale-New Haven Med Ctr, CT University of VT Med Ctr, VT Boston University GC Program, MA Brandeis University GC Program, MA Hasbro Children s Hospital, RI Aiming for at least 10 sites in 2019

37 RAMPING IT UP Remember! Don t forget Think young Think early Metabolic medicine is the direct clinical application of biochemistry

38 ASSOCIATION OF BIOCHEMISTRY EDUCATORS

39 BIOCHEMISTRY IS IN FIRST-YEAR MEDICAL SCHOOL! Their goal My plan The topic How to make biochemistry relevant? Metabolic disease makes it relevant! Keynote speaker at their next biannual meeting Putting the human back in biochemistry

40 PUTTING THE HUMAN BACK IN BIOCHEMISTRY Live Storytelling in biochemistry courses. We need volunteers throughout the US and Canada! A video library of patient stories, for downloading into lectures. We need volunteers! Glycogen storage disease type I Acute intermittent porphyria Very long chain acyl CoA dehydrogenase deficiency Pyruvate dehydrogenase deficiency

41 OUR HYPOTHESES 2. A medical student or trainee is more likely to be interested in metabolic disorders if s/he has seen an affected patient before and heard his/her story.

42 Patient Forums From : # of 1 st year Tufts medical students requesting elective time in the Metabolism Clinic 0

43 Patient Forums NEW INTEREST! From : The audience remembers! # of 1 st year Tufts medical students requesting elective time in the Metabolism Clinic 18

44 Patient Forums NEW INTEREST! From : The audience 18 electives remembers! 3 summer projects in the clinic a 4th enrolled in the ACMG Summer Scholars program 3 declared they want to pursue genetics training

45 THE MEDICAL ELECTIVE CONCEPT

46 IF THERE ARE NOT ENOUGH OF US. Clinical services that see metabolic patients but may not realize what they are seeing: Neurology Gastroenterology Nephrology Endocrinology And others Cardiology Hospital Medicine Emergency Medicine Neonatology

47 ACGME-ACCREDITED PROGRAMS, Clinical services that see metabolic patients but may not realize what they are Number seeing: of US Neurology* Gastroenterology* Nephrology* training programs Number of (on-call) residents * Pediatric subspecialty training

48 THE ONLINE METABOLISM ELECTIVE - NEUROLOGY

49 BARTH SYNDROME PORPHYRIA PKU OTC DEFICIENCY NAGS DEFICIENCY FABRY DISEASE

50 THE ONLINE METABOLISM ELECTIVE - GASTROENTEROLOGY

51 BARTH SYNDROME MAROTEAUX-LAMY SYNDROME PORPHYRIA OTC DEFICIENCY NAGS DEFICIENCY FABRY DISEASE

52 THE ONLINE METABOLISM ELECTIVE - NEPHROLOGY

53 TYROSINEMIA TYPE I GSD I PORPHYRIA OTC DEFICIENCY NAGS DEFICIENCY FABRY DISEASE

54 THE ONLINE METABOLISM ELECTIVE INTRODUCING PATIENTS AND DISORDERS THESE DOCTORS AND TRAINEES MAY NOT SEE IN THEIR CLINCAL ROTATIONS

55 BUILDING UP THIS SPECIALTY TOGETHER Collaboration Disease foundations Patient advocacy organizations Pharmaceutical companies + other corporate partners

56 BUILDING UP THIS SPECIALTY TOGETHER Consider your role Be an active storyteller Brainstorm with us Support the effort

57 HELP US HELP YOU

58 Thank You! voice fax