1) Comprehensive care centres that adhere to standards of care for inherited bleeding disorders like hemophilia have been shown to significantly improve health outcomes and reduce costs.
2) A 1970s study in Montreal found that home treatment of bleeding episodes supported by a comprehensive care centre reduced hospitalizations by 85% and costs by 85% for children with hemophilia.
3) Later studies also showed patients who received care at comprehensive care centres had lower risks of hospitalization and morbidity.
Real-World Data and Real-World Evidence Webinar
Panelists
Tara Cowling, Medlior
Laurie Lambert, CADTH
Craig Campbell, London Health Sciences
Sandra Anderson, Innomar Strategies
Brad Alyward, Canadian Organization for Rare Disorders
Durhane Wong-Rieger, Canadian Organization for Rare Disorders
A Rare International Dialogue (Saturday May 11, 2019)
Designing Pathways to Patient-Centered Care
Bone marrow as a Vehicle for Correction of Rare Disorders: Donna Wall, The Hospital for Sick Children
A Rare International Dialogue (Saturday May 11, 2019)
Designing Pathways to Patient-Centered Care
Best Practice Case: Hemophilia - David Page, Canadian Hemophilia Society
Real-World Data and Real-World Evidence Webinar
Panelists
Tara Cowling, Medlior
Laurie Lambert, CADTH
Craig Campbell, London Health Sciences
Sandra Anderson, Innomar Strategies
Brad Alyward, Canadian Organization for Rare Disorders
Durhane Wong-Rieger, Canadian Organization for Rare Disorders
A Rare International Dialogue (Saturday May 11, 2019)
Designing Pathways to Patient-Centered Care
Bone marrow as a Vehicle for Correction of Rare Disorders: Donna Wall, The Hospital for Sick Children
A Rare International Dialogue (Saturday May 11, 2019)
Designing Pathways to Patient-Centered Care
Best Practice Case: Hemophilia - David Page, Canadian Hemophilia Society
Mr James Downie, CEO, presented on the topic 'Moving towards value based funding' at the 2017 Activity-Based Funding Conference, hosted by the Health Service Executive, Ireland on 11 May 2017.
International Health Policy and Practice: Comparing the U.S. and Canada on Ac...The Commonwealth Fund
Dr. Eric Schneider's presentation on international health policy and practice. This presentation was delivered at the 2015 AcademyHealth Annual Research Meeting on June 14, 2015.
Public Reporting as a Catalyst for Better Consumer DecisionsATLAS Conference
Greater efficiency in the process of matching patients to appropriate providers is vital to achieving the Triple Aim. As patients research and choose among appropriate providers, sound decision-making will depend on the accessibility of high-quality data that enables them to make meaningful, actionable comparisons. Online public-reporting tools, such as those published by U.S. News, CMS and others, serve as venues for consumer decision-making. Driven by current trends in data transparency, rapid advances in public reporting can be anticipated. This presentation will outline several recent and expected future developments in the evolution of key public-reporting tools, and discuss their role in facilitating patient engagement and access to appropriate care.
QI initiative: Acute Kidney Injury (AKI) Care in Acute OncologyCarl Walker
Dr Al-Sayed et al (The Christie NHS Foundation Trust) share their successful QI project to improve patient care in AKI as part of NQICAN Patient First 2016 presentation.
Developing and implementing clinical standards for seven day servicesNHS Improving Quality
Celia Ingham Clark National Director: Reducing Premature Mortality. Slides from Celia's presentation from the 7 Day Services events West Midlands 11th June and East Midlands 12th June 2014
Similar to David page cord standards of care 05 03-2015 (20)
On this webinar, we’ll hear from experts on the issue and invite an open conversation with stakeholders. We need discussion, shared questions and answers and a review of case studies, which is why we are hosting this session.
Panelist:
Neil Palmer, Principal Consultant, WN Palmer & Co. and former PMPRB staff
Michael Dietrich, Executive Director, Policy, Innovative Medicines Canada
Laurene Redding, Global Head, Strategic Pricing (ex-China), BeiGene
Durhane Wong-Rieger, President & CEO, CORD
Moderator: Bill Dempster, CEO, 3Sixty Public Affairs
CORD Rare Drug Conference: June 8-9, 2022
Registries and Real-World Data
INFORM RARE: Beth Potter, Alexandra Wyatt, Pranesh Chakraborty,
Monica Lamoureux, John Adams, Kim Angel
CORD Rare Drug Conference: June 8-9, 2022
Registries and Real-World Data
INFORM RARE: Beth Potter, Alexandra Wyatt, Pranesh Chakraborty,
Monica Lamoureux, John Adams, Kim Angel Opportunities and Challenges for Data Management
CORD Rare Drug Conference June 8-9, 2022
Global, International, and National Rare Disease Networks
Rare Disease Research Network and National Children’s Hospital - Marshall
Summar, Rare Disease Institute
CORD Rare Drug Conference: June 8-9, 2022
Global, International, and National Rare Disease Networks
WHO-RDI Global Rare Disease Network - Matt Bolz-Johnson, EURORDIS
CORD Rare Drug Conference: June 8-9, 2022
Global, International, and National Rare Disease Networks
Canadian Network of Rare Disease Centres of Excellence - Paula Robeson, Children’s Healthcare Canada
CORD Rare Drug Conference: June 8 - 9, 2022
The Ottawa Pediatric Bone Health Research Group and The Canadian Consortium for Children’s Bone Health/Canadian Alliance for Rare Disorders of the Skeleton - Leanne Ward, CHEO
More from Canadian Organization for Rare Disorders (20)
1. Inherited Bleeding Disorder Comprehensive
Care Centres / Standards of Care
Impact on Quality of Care and Health
Outcomes
David Page
National Executive Director
Canadian Hemophilia Society
CORD Rare Disease Day Conference
March 5, 2015
2. Inherited bleeding disorders
Bleeding disorder
Number registered in
centres*
Incidence
Hemophilia A 3094 1 in 10,000
Hemophilia B 869 1 in 40,000
Von Willebrand disease 4184 1 in 1000?
Rare factor
deficiencies (I, II, V, VII,
X, XI, XIII)
1517
1 in 100,000 to 1 in
5,000,000
Platelet function
disorders
954 Very low
* Data from 2013-14 CHS centre resource assessment
3. Inherited bleeding disorders
Severity of
bleeding
symptoms
Hemophilia A
and B
von Willebrand
disease
Rare factor
deficiencies
Platelet
function
disorders
Joints ✓✓✓
Muscles ✓✓ ✓
Bruising ✓ ✓ ✓✓ ✓
Vital organs ✓✓ ✓✓✓
Mucosal ✓ ✓✓✓ ✓ ✓✓✓
Menorrhagia ✓ ✓✓✓ ✓ ✓✓
Post-trauma ✓ ✓ ✓✓✓ ✓
Surgical ✓ ✓ ✓✓ ✓
Lacerations ✓✓ ✓ ✓✓
6. Comprehensive care
Hemophilia Care
“Medical care for hemophilia is specialized. A person
with hemophilia must receive care from healthcare
workers who have expert knowledge of the bleeding
disorder. The wide-ranging needs of people with
hemophilia and their families are best met through
Hemophilia Treatment Centres rather than by
individual doctors.”
- World Federation of Hemophilia: Organizing a
National Programme for Comprehensive Hemophilia
Care.
7. Comprehensive care
Hemophilia Care
“Medical care for hemophilia is specialized. A person
with hemophilia must receive care from healthcare
workers who have expert knowledge of the bleeding
disorder. The wide-ranging needs of people with
hemophilia and their families are best met through
Hemophilia Treatment Centres rather than by
individual doctors.”
- World Federation of Hemophilia: Organizing a
National Programme for Comprehensive Hemophilia
Care.
8. Comprehensive care principles*
• Improved quality of life
• Collaboration among HTCs and networks needs to be
encouraged
• Bleeding disorders are associated with a number of
complications… and so care needs to be comprehensive.
• Evaluation of clinical outcomes is essential.
• Standards of care are needed and should be audited.
• Accountability for utilization of coagulation therapy is
necessary
• Regional differences within the province or region must be
acknowledged in the provision of care.
* CANADIAN COMPREHENSIVE CARE STANDARDS FOR HEMOPHILIA AND OTHER
INHERITED BLEEDING DISORDERS, First Edition, June 2007
9. Health outcomes
“A two-year study of 40 children in Montreal indicates
that home care treatment of bleeding episodes,
supported by a comprehensive care centre, reduces
hospitalizations by 85%, arrests the development of
severe hemorrhages and reduces costs by 85%.”
10. Health outcomes
“A two-year study of 40 children in Montreal indicates
that home care treatment of bleeding episodes,
supported by a comprehensive care centre, reduces
hospitalizations by 85%, arrests the development of
severe hemorrhages and reduces costs by 85%.”
(Dr. Hanna Strawczynski, MD of Canada, October
1972)
11. Health outcomes
“Patients who used both home therapy and received
care in HTCs* had the highest probability of avoiding
hospitalization for bleeding complications during the
follow-up period.”
J. M. SOUCIE et al, Haemophilia (2001), 7, 198±206
“Those persons who had received care in an HTC had
a 40 percent decreased risk of morbidity and
mortality.”
J.M. Soucie et al, BLOOD, 15 July 2000 • Volume 96, Number 2
*HTC – Hemophilia Treatment Centre
12. Comprehensive care
1. Provincial designation
2. National patient registries
3. Self/family administration of therapeutics
4. Patient, family and association involvement in care
5. Education of patients, families and health care
providers
6. Standards of care and portability
7. Decentralization through outreach
(Adopted by Network of Rare Blood Disorder
Organizations, 2006 conference)
13. Comprehensive care
8. Inter-disciplinary care
9. Defined core services delivered by a
comprehensive care team
10. Program evaluation and accreditation
11. National collaboration
12. Post-marketing surveillance
13. Collaborative research
14. Flexibility in organization
(Adopted by Network of Rare Blood Disorder
Organizations, 2006 conference)
14. Hemophilia/IBD standards of care
Adopted in June 2007 after interdisciplinary study
by…
Association of Hemophilia Clinic Directors of Canada
Canadian Association of Nurses in Hemophilia Care
Canadian Physiotherapists in Hemophilia Care
Canadian Social Workers in Hemophilia Care
Canadian Hemophilia Society (patient organization)
15. Standards of care document
• Principles of care
• Populations served
• Definition of core team members (MD, RN, PT, SW,
admin/data)
• Definition of extended team members (e.g. OB-
GYN)
• Services provided
• Responsibilities of an HTC
• Standards
• Scope of care & key indicators
• e.g Establish and maintain a full complement of core team
members
• Quality measures & key indicators
• e.g. Participate in data collection
• Therapeutic services & key indicators
• E.g. Have sufficient number of assessment clinics
16. Assessing standards of care
2007: Standards adopted
2009: Self-assessment of standards by 22 of 24 HTCs
2009: Standards found to be realistic, useful,
acceptability judged high, and appropriate to be used
for external accreditation (audit)
2010: External audit process developed based on
similar process used by HTC networks in U.K.
and Ireland
2011-2012: Audit process delayed by hospital patient
privacy issues
2013: CHS developed own “centre assessment”
process based on work done by its Quebec
Chapter
17. Centre assessments
In three parts:
1.In-person interviews with all core team members in
24/25 centres across Canada (approximately 150
people) to assess their capacity to respect standards
of care
2.Data collection on numbers of patients and FTEs of
core team members
3.In-depth, anonymous patient satisfaction survey
sent to a random sample of patients (400 responses)
18. Centre assessments: deliverables
20 individual centre assessments (plus a collective
assessment for 4 Quebec centres) with…
• HTC strengths
• HTC weaknesses
• Assessments of human resource needs
• Assessments of physical resource needs
• Patient observations and appreciation
• Recommendations to HTCs, hospitals and
Ministries of Health
19. Centre assessments: key observations
• Most centres have insufficient human resources to
respect standards
• Many centres have insufficient physical resources
(space and time) to properly conduct clinics
• Core teams are not complete in some centres (e.g.
no dedicated physiotherapist or social worker)
• Many centres do not have adequate resources to
collect and act on health outcome and factor
utilization information
• Patients are overwhelmingly appreciative of the
services and care they receive!
20. Centre assessments: deliverables
A national report (to be published in June 2015)
including…
•Common strengths
•Common weaknesses
•Recommendations that apply across Canada
•Data:
• Ratios of FTEs in each centre by discipline per
100 patients with hemophilia A and B
• Comparison of the cost of coagulation
therapies to the cost of delivery of care
(staffing, procedures, hospital admissions, lab
work…)
21. Centre assessments: advocacy
• Delivery of final centre assessment reports to
centre staff and provincial chapters of CHS (✔)
• Meetings with local chapters and centre staff to
develop local advocacy plans
• Meetings with local and provincial health officials,
where needed
• Meeting with Provincial / Territorial Blood Liaison
Committee
22. The concept of comprehensive care for inherited
bleeding disorders, based on standards of care, is
accepted and widely adopted in developed and
developing countries around the world …
… and is waiting to be widely copied by other rare
disorders!