This document summarizes the cystic fibrosis care environment in British Columbia. It outlines the challenges with the current system including increasing patient numbers and complexity as well as new treatments. It discusses previous attempts to address issues and the need for standards of care, improved transitions of care, access to specialized care, and data collection. The document proposes using a collective impact model to engage partners around a shared agenda of creating a sustainable provincial cystic fibrosis care system. It notes progress including the formation of an advisory group and work on standards and metrics.

1. Vison for Canadian Rare Disease
Networks
Cystic Fibrosis in British Columbia
30 March 2017

2. Health Care Environment in British Columbia
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CF Clinics
•Island Health
• Royal Jubilee
• Victoria General
•Vancouver Coastal Health
• St. Paul’s Hospital
•Provincial Health Services
• BC Children’s Hospital
Provincial Health Services Authority

3. Provincial Health Services Authority (PHSA)
• PHSA plans, manages and evaluates specialty and province-­wide health care
services across BC, working with the five geographic health authorities to meet local
and provincial needs
• It is responsible for managing and governing well-­known specialized agencies and
services:
-­ BC Cancer Agency -­ BC Renal Agency
-­ BC Centre for Disease Control -­ BC Transplant
-­ BC Children’s Hospital -­ Perinatal Services BC
-­ BC Mental Health Substance Use Services -­ Cardiac Services BC
-­ BC Women’s Hospital + Health Centre -­ Stroke Services BC
• It plans, coordinates, evaluates and, in some cases funds specialized services
delivered by the regional health authorities. PHSA’s role supports the accessibility,
quality, efficiency and effectiveness of province-­wide programs and services.
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4. Current system challenges and opportunities
• Increasing numbers of individuals living with CF across the province
• Increasing clinical complexity and the existence of co-­morbid medical conditions
• New drugs with patients requiring access and subsequent close monitoring and
reporting to ensure ongoing funding/approvals. More of these drugs are in the
pipeline.
• Clinics and the model of care were never purpose built to support the current
needs of patients
• Technology has enabled opportunities for virtual care models
• Transitions of care are increasingly necessary (pediatric to adult) and a need to
define role and sharing of care with other specialists and GPs
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5. Adults Living with Cystic Fibrosis in B.C.
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6. Children Living with Cystic Fibrosis in B.C.
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7. • In 2013, the MOH sponsored KPMG to develop a Business Case after Cystic Fibrosis
Canada and clinicians had highlighted concerns. Limited action arose from this.
• In 2014 Cystic Fibrosis Canada again met with the provincial government to address
funding issues which resulted in the BC Minister of Health requesting the Health Authority
senior leaders to meet and discuss options. Again there was limited resulting action with
no lead organization.
• In 2015, following further correspondence with the Ministry of Health, Provincial Health
Services Authority (PHSA) was asked to take an active role in pulling key stakeholders
together. This included clinicians and leadership from existing clinics, patients and CF
Canada.
• In 2015, as well, clinicians were successful in receiving funding through Doctors of BC -­ 3
phases, 3 years to establish standards of care and care pathways.
• In 2016, presentations were made to senior staff at the Ministry of Health to outline
ongoing challenges and problem solve.
Background for Work in B.C.

8. What is Needed?
• Application of standards of care – care provided in CF clinics and in primary and
acute care environments varies, as there are few currently applied standards
• Increased support for individuals transitioning to adult care and through primary and
acute care – outside of the 4 CF clinics;; there is limited awareness in emergency
rooms, inpatient units, and in primary care settings around the province surrounding
CF treatment
• Improved provincial access to specialized care and increased use of
technology/virtual care – a third of patients reside outside of Victoria and the Lower
Mainland and only have access to specialized care by travelling to CF clinics or
through very limited outreach
• Increased shared care with “CF aware” specialists and allied health
• Increased availability of provincial patient care, performance and operational data –
relevant data to support individual patient care management, planning, and research
is not systematically collected 8

9. Who needs to be involved?
• Specialist clinics
• Regional Health Authorities
• Provincial Health Services Authority
• Patients/families
• CF Canada
• Ministry of Health
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10. How Do We Get There?
• Collaboration which brings together different partners with a
common agenda to solve large complex problems.
• A method to engage partners from different sectors to solve the
complex problems.
• One such method, which approximates the approach we have taken
provincially, is the “collective impact” model.
• It is built upon five interconnected components to produce strong
alignment and lead to large scale system results.
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11. Necessary Components
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Stanford Social Innovation Review, 2011

12. Our Shared Agenda
To create a sustainable, responsive and dynamic CF care delivery
system in British Columbia
– That is patient-­centred
– That responds to growth
– That ensures provincial reach
– That responds to new drug advances
– That is integrated, consistent, without gaps in care
– That optimizes a shared care model
– In a context of fiscal restraint and competing demands
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13. Where are we at?
• Provincial Advisory Group with membership from all key partners
including senior level leadership
• An accountability structure for regular reporting
• Standards of care and clinical pathways
• Plan for a data capture system and performance metrics
• Provincial Health Services Authority providing leadership and
serving as the backbone organization with dedicate resources
• Commitment
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14. 14
Thank You
pam.ramsay@phsa.ca