Pulmonary Hypertension Association of Canada

Transcription

1 Pulmonary Hypertension Association of Canada Strategic Plan

2 WHO WE ARE The Pulmonary Hypertension Association of Canada (PHA Canada) is a federally registered charity established by patients, caregivers and health care professionals collectively referred to as the Canadian pulmonary hypertension community. OUR VISION A better life for all Canadians affected by pulmonary hypertension. OUR MISSION To empower the Canadian pulmonary hypertension community through awareness, advocacy, education, research and patient support. OUR CORE VALUES To accomplish our vision and mission, we base our decisions and actions on the following core values and beliefs: Respect: We encourage and recognize the potential and contribution of members of our community, donors, partners and staff. Integrity: We act consistently with PHA Canada s mission. We are honest and transparent in what we do and say and we accept responsibility for our collective and individual actions. Commitment: We work together effectively in order to serve the Canadian pulmonary hypertension community. Excellence: We hold ourselves to a high standard. We work to achieve the highest levels of performance and are always learning in order to ensure the greatest impact on behalf of our community. 2

3 BOARD OF DIRECTORS Officers Sanjay Mehta Chair Directors at large Roberta Massender Vice Chair Lynn-Marie Cox Secretary Darren Bell Founding Member Ruth Dolan Director Owen Evans Director Jennifer Gendron Founding Member Harry Kingston Director Sharon Proudfoot Founding Member Carolyn Pugliese Director 3

4 STAFF Angie Knott National Manager Susan Lowe Community Relations and Volunteer Coordinator Mariane Bourcheix-Laporte Communications Associate Shirley Wong Administrative Assistant 4

5 KEY ISSUES IN THE DIAGNOSIS AND MANAGEMENT OF PH IN CANADA 1. Delayed diagnosis of PH 2. Inadequate support for PH patients and their caregivers 3. Sub-optimal access to PH care 4. Poor awareness of PH amongst Canadians 5. Limited benefits of current PH treatments 5

6 ISSUE #1 DELAYED DIAGNOSIS OF PH Rationale: The time from onset of symptoms to a diagnosis of PH is too long: e.g. PHA Canada BOI survey, international data Patient/caregiver suffer for a prolonged period before diagnosis This negatively potentially impacts patient outcomes This is because of lack of public awareness of PH and lack of knowledge of PH in medical / healthcare professionals Tests are not being interpreted correctly This can result in lack of confidence in the medical system Undiagnosed patients still out there not benefitting from care or PHAC support Goal: Reduce the delay to diagnosis to no more than 6 months within 2 years Plan: To educate family doctors in Canada about PH To educate other medical and healthcare practitioners about PH To increase general public awareness of PH Key Participants: PHA Canada staff, PHA Canada Committees (Medical Advisory Committee, Canadian PH Professionals Network), PHA Canada Ambassadors, PH Centres of Excellence 6

7 ISSUE #2 INADEQUATE SUPPORT FOR PH PATIENTS AND THEIR CAREGIVERS Rationale: Patients don t know where to go for help, or even what help they need Social isolation of patients and caregivers post-diagnosis Lack of understanding of burden of illness amongst healthcare professionals There is public lack of awareness of PHAC and its support programs Many Canadian PH patients are not PHAC members, and thus do not have access to or benefit from PHAC programs Goal: Increase membership in PHAC to 25% of PH patients in each clinic by 2016 Plan: To increase value provided to PH expert centers To engage Canadian PH nurses to identify PHAC as a resource To increase general public awareness of PHAC To seek the help of stakeholder partners Key Participants: PHA Canada staff, PHA Canada Committees (Canadian PH Professionals Network), PHA Canada Ambassadors, Stakeholder partners, PH Centres of Excellence 7

8 ISSUE #3 SUB-OPTIMAL ACCESS TO PH CARE Rationale: Regional challenges to access PH Centres of Excellence Lack of full and equal access to all available treatments o Industry not seeking Health Canada approval due to uncertain commercial environment o National approval o Provincial/regional disparities o First Nations access Limited local community expert care Insufficient funding for comprehensive care at PH Centres of Excellence (nurses, administration, psychosocial) Goal: Ensure that 100% of Canadian PH patients have within 5 years: Access to excellent and comprehensive PH care Access to all approved PH therapies Plan: Create a Government Relations Committee to o Advocate for 100% access to all available medical therapies across Canada o Engage relevant Government Stakeholders Create standards of excellence for comprehensive PH care Key Participants: Patron, PHA Canada Committees (Canadian PH Professionals Network), PH Centres of Excellence, Government Relations Committee 8

9 ISSUE #4 POOR AWARENESS OF PH AMONGST CANADIANS Rationale: There is a lack of PH awareness amongst highly relevant target groups: General public: Only 3 in 10 Canadians have heard of PH Health care providers Corporations/potential funders (non-pharmaceutical) Federal and Provincial governments Private health insurance Goal: Increase awareness of PH across Canada to 5 in 10 Canadians by 2017 Plan: To increase awareness of PH through public relations To appoint a high profile Patron Key Participants: PHA Canada staff, PHA Canada Ambassadors, PHA Canada Knowledge Philanthropists 9

10 ISSUE #5 LIMITED BENEFITS OF CURRENT PH TREATMENTS Rationale: No cure Invasive/complex treatments Ongoing significant burden of illness Progression of disease despite therapy Side effects of therapy Goal: Encourage PH research in Canada Plan: Create awareness of PHAC research policy and fund 2 research projects by 2016 Educate the Canadian PH community about the importance of participating in clinical PH research Align with other stakeholders in PH research Key Participants: PHA Canada Committees (Medical Advisory Committee, Canadian PH Professionals Network), PH Centres of Excellence, Stakeholders (public and private) 10