The challenges of implementing selffamily care in the treatment by stephan2

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									 The challenges of implementing
self/family care in the treatment of
      hereditary angioedema
                 Bruce Ritchie
                 Medical Director, The
                 Dr. John Akabutu
                 Centre for Bleeding
                 Disorders, 2004
 The challenges of implementing
self/family care in the treatment of
      hereditary angioedema

                 Barriers, what barriers?

                 If you have an
                 infrastructure, there are
                 NO BARRIERS
 The challenges of implementing
self/family care in the treatment of
      hereditary angioedema
  No infrastructure?
  •No product
  •No support for home
  treatment
  •No tracking
  •No surveillance
  •No work
  •No dancing
  •NO FUN
 The challenges of implementing
self/family care in the treatment of
      hereditary angioedema
  Infrastructure?
  •Clinic with DEDICATED STAFF, DATA
  •Clinic network - tracking, surveillance,
  standards, research, PROGRESS
  •Organization of stakeholders - nurses,
  physios, social workers, physicians,
  governments, industry, PATIENTS
  •Communication / negotiation /
  CONSENSUS
 The challenges of implementing
self/family care in the treatment of
      hereditary angioedema
               Clinic
               Clinic Network
               Organization of
               Stakeholders
               Communication
               Attitude
Teaching home treatment
Teaching home treatment
“Never raise your hand to your kids.
 It leaves your groin unprotected.”

            Red Buttons
Teaching home treatment -
          Camp
Teaching home treatment -
          Camp
  Small boys become big men
through the influence of big men
   who care about small boys.

            Unknown
Teaching home treatment -
          Camp
 The challenges of implementing
self/family care in the treatment of
      hereditary angioedema
               Clinic
               Clinic Network
               Organization of
               Stakeholders
               Communication
               Attitude
               Comprehensive Clinic
•   24 clinics      Structure
    – Adult = 3
    – Pediatric = 3
    – Combined = 18
• 49 directors / investigators
• 32 hemophilia nurses
• Various degrees of official “recognition” / responsibility for
  product distribution, tracking,
• Standards
• Surveillance
    – Inhibitor surveillance lab
    – Blood Borne Pathogens Project
    – Genotyping
Canadian Hemophilia Registry:
  www.fhs.mcmaster.ca/chr/
Canadian Hemophilia Assessment and
Resource Management information
System
(CHARMS) & NACHC
Product distribution                 Drug Company
(CBS)                                Palm Pilot systems
Clinical outcomes
(clinic)
 Genotyping                                CBS, HQ
                                Product
 (AHCDC)
                                use/outcomes
                                           Provincial
 Sample archive      CenterPoi
                     nt server,            Governments
                     Hamilton Adverse Health Canada
                                 events
                                         Manufacturers
                                         CBS, QBS
Hemophilia Surveillance in
        Canada
   As an adolescent I aspired to lasting fame, I craved factual
certainty, and I thirsted for a meaningful vision of human life - so I
became a scientist. This is like becoming an archbishop to meet
                                 girls.

                               Matt Cartmill,
            Professor of Biological Anthropology and Anatomy,
                              Duke University
      Gene
•
     Therapy
  Chimeroplasty
• Zinc finger mutagenesis
 The challenges of implementing
self/family care in the treatment of
      hereditary angioedema
               Clinic
               Clinic Network
               Organization of
               Stakeholders
               Communication
               Attitude
            Hemophilia Care in
•                     Canada
  Canadian Hemophilia Society, 1953, industry funded
• World Federation of Hemophilia, 1963
• First Hemophilia Clinics Montreal, BC 1969
• Association of Hemophilia Clinic Directors of Canada
  (AHCDC), 1993, funded by variety of sources to 800,000 $
  Can/year
• Canadian Association of Nurses in Hemophilia Care
  (CANHC), industry funded through CHS
• Physiotherapy group - currently unfunded
• “Back to the future”
   – Gene therapy with viruses, chimeroplasty, artificial chromosomes,
     siRNA ….
   – Practice Guidelines, Cochrane collaborations, SOPs
   – vWD awareness campaign, …
  "The History of every major Galactic civilization tends to pass
through three distinct and recognizable phases... known as the
     How, the Why and Where phases. ... The first phase is
characterized by the question How can we eat?; the second by
 the question Why do we eat?; the third by the question Where
                      shall we have lunch?”

        Douglas Adams, The Hitch Hiker's Guide to the Galaxy
 The challenges of implementing
self/family care in the treatment of
      hereditary angioedema
               Clinic
               Clinic Network
               Organization of
               Stakeholders
               Communication
               Attitude
“If nothing goes wrong is everything alright?”

             JAMA 249 13, 1743-5
rFVIII for Hemophilia,
   1993 Canada
  Standards in
Hemophilia, 1998
    Canada
 The challenges of implementing
self/family care in the treatment of
      hereditary angioedema
               Clinic
               Clinic Network
               Organization of
               Stakeholders
               Communication
               Attitude
“Embrace change”

   anonymous
“Embrace controversy”

     Bruce Ritchie
               If you're not living on the Edge
           then you're taking up too much space.



"The stars are matter - We are matter - But it doesn't matter”

                         Don Van Vleit
E=mc^2 Not just a good idea, it's the law

								
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