PHA Canada EDx Campaign Framework Report

P H A C A N A D A ’ S
Early Diagnosis
Program Framework
Suite #208 1311
Howe Street Vancouver, V6Z 2P3
P: (604) 682- 1036
Toll Free: 1-877-7-PHACAN (1-877-774-2226)
E-Mail: website@phacanada.ca Web: www.phacanada.ca

E D x P r o g r a m F r a m e w o r k 2
Acknowledgments
T h i s r e p o r t i s c o m p i l e d w i t h a l l r e l e v a n t i n f o r m a t i o n r e g a r d i n g t h e o r i g i n a l
f o u n d a t i o n o f t h e E a r l y D i a g n o s i s P r o g r a m F r a m e w o r k . T h e p u r p o s e o f t h i s
r e p o r t i s o n l y t o i n f o r m a n d r e c o m m e n d o n a c t i o n s r e g a r d i n g t h e E D x
P r o g r a m , a n d a n y r e l e v a n t c o n c l u s i o n s f o u n d a l o n g t h e w a y .
J e n n i f e r G r e w a l , a M P H c a n d i d a t e s t u d e n t p u t t h i s r e p o r t t o g e t h e r b y
c o m b i n i n g i n f o r m a t i o n s h e o b t a i n e d f r o m h e r o w n w o r k , P H A C a n a d a ’ s
V a n c o u v e r s t a f f , a s w e l l a s i n t e g r a t i n g t h e w o r k o f t h e p r e v i o u s p r a c t i c u m
s t u d e n t , R u s s e l l B o n a g u r o .
T h e f o l l o w i n g P H A C a n a d a – V a n c o u v e r S t a f f m e m b e r s w e r e i n s t r u m e n t a l i n
a s s i s t i n g w i t h t h e i n f o r m a t i o n c o m p i l e d i n t h i s r e p o r t : A n g i e K n o t t ,
B r o n w y n M c B r i d e , T a r y a L a v i o l e t t e , S u s a n L o w e , M a r i a n e B o u r c h e i x -
L a p o r t e , a n d S h i r l e y W o n g . I n a d d i t i o n t h e f o l l o w i n g m e m b e r s / c o m m i t t e e s
p r o v i d e d t h e i r t i m e a n d e x p e r t i s e o n n u m e r o u s o c c a s i o n s : T h e M A C
c o m m i t t e e , t h e P H A C a n a d a B o a r d o f D i r e c t o r s , D r . S t e e v e P r o v e n c h e r , D r .
D a v i d C o a t e s , D r . P a u l H e r n a n d e z , L i n d a F e r g u s o n , G a i l N i c h o l s o n ,
R u s s e l l ’ s o r i g i n a l d o c u m e n t a t i o n i s s t i l l a v a i l a b l e a n d c a n b e f o u n d i n t h e
P H A C a n a d a d r o p b o x u n d e r t h e P H A C a n a d a f o l d e r , w i t h i n t h e s u b - f o l d e r
“ E a r l y D i a g n o s i s A r c h i v e d ” . A l l “ R e c o m m e n d e d D o c u m e n t s ” m e n t i o n e d i n
t h i s r e p o r t c a n b e f o u n d i n t h e P H A C a n a d a F o l d e r ’ s s u b - f o l d e r “ E a r l y
D i a g n o s i s P r o g r a m F r a m e w o r k 2 0 1 5 ” .

Table of Contents
A C K N O W L E D G M E N T S . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2
I N T R O D U C T I O N . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
O b j e c t i v e o f t h e E D x P r o g r a m . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
E D X T A S K F O R C E . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
A C T I O N P L A N . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
T A R G E T A U D I E N C E S . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
G E N E R A L P H Y S I C I A N S / P R A C T I T I O N E R S ( G P S ) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
R e s o u r c e s f o r G P ’ s . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
S P E C I A L I S T S . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8
N U R S E P R A C T I T I O N E R S ( N P S ) . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8
O U T R E A C H . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
C O N F E R E N C E S . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
W E B S I T E . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
P U B L I C A T I O N S . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
P O T E N T I A L O P T I O N S . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 0
P A R T N E R S H I P S . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 1
E V A L U A T I O N S . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 1
R E C O M M E N D A T I O N S . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 2
N o n - P H S p e c i a l i s t s . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 2
N u r s e P r a c t i t i o n e r s . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 2
P H A C a n a d a O n l i n e U n i v e r s i t y S i t e . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 3
C M E A c c r e d i t a t i o n . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 3
F I N A L E . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 4
R E C O M M E N D E D D O C U M E N T S . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1 5

Introduction
P u l m o n a r y H y p e r t e n s i o n ( P H ) i s s t i l l w i d e l y m i s d i a g n o s e d b y m e d i c a l
p r o f e s s i o n a l s , d e s p i t e h a v i n g a t o t a l o f 9 t r e a t m e n t o p t i o n s a v a i l a b l e t o
p a t i e n t s . I n o r d e r t o i m p r o v e t h e l i v e s o f P H p a t i e n t s , t h e E a r l y
D i a g n o s i s ( E D x ) P r o g r a m h a s b e e n f o r m u l a t e d t o r a i s e a w a r e n e s s o f P H
a m o n g t h e m e d i c a l c o m m u n i t y a c r o s s C a n a d a a n d a d v o c a t e t o p h y s i c i a n s
t h e i m p o r t a n c e o f d i a g n o s i n g P H i n p a t i e n t s a s e a r l y a s p o s s i b l e .
O b j e c t i v e o f t h e E D x P r o g r a m
T h e m a i n g o a l o f t h e E D x P r o g r a m i s t o s h o r t e n t h e d e l a y f r o m o n s e t o f
s y m p t o m s t o t h e d i a g n o s i s o f P H i n C a n a d a .
O v e r v i e w o f P H A C a n a d a ’ s C a p a c i t y
I n t e r n a l R e v i e w A s s e t s C h a l l e n g e s
Have affiliated medical experts to
give credibility and show
willingness to act
Building a national reputation
since PHA CAN is relatively small
and little well-known
Clear identity of PHA Canada as a
medical and patient-oriented
organization
Establishing partnerships and
endorsements with organizations
of interest due to little reputation
National Conference adds to
visibility of program
Lack of knowledge on motivations
and thoughts of target audiences
Access to patients and health care
providers to advocate the PH
stories and PHA CAN cause
Lack of comprehensive media lists
Strong channels of communication
with the PH community (support
for EDx program)
Absence of a National Registry to
evaluate the primary care to
specialist referral of PH patients
Thriving KP program – to recruit
skilled and committed volunteers
Lack of resources (funds and man
hours) to do large-scale program
E n v i r o n m e n t a l S c a n A s s e t s C h a l l e n g e s
No existing controversy around
PHA issues
Positioning this rare disease as an
urgent health issue among many
other health issues in Canada
Lack of PH awareness;
opportunity to set the standards of
PH knowledge and understanding
Organizations of interest already
have other commitments; can
limit or dissuade them from
participation with PHA CAN
Strong existing foundation outside
of PHA about rare and chronic
diseases
Getting GP’s attentive to PH
when they have other more
prominent diseases they face daily
PH centers exist and growth of
treatments increase PH patient
chance of longer and healthier life

EDx Task Force
T h e E D x t a s k f o r c e i s f o r m e d b y a g r o u p o f m e d i c a l p r o f e s s i o n a l s a n d P H
a d v o c a t e s ( e . g . p a t i e n t s , c a r e g i v e r s , e t c . ) w h o a r e i n v e s t e d i n l e n d i n g t h e i r
t i m e a n d e x p e r t i s e t o t h e P H A C a n a d a E D x P r o g r a m ’ s o u t r e a c h . T h e s e
e x p e r t s w i l l u s e t h e i r m e d i c a l k n o w l e d g e a n d / o r e x p e r i e n c e s t o i n f o r m a n d
c o n t r i b u t e t o t h e p r o g r a m ’ s m a t e r i a l s a n d p r o f e s s i o n a l c o n n e c t i o n s , t o h e l p
c r e a t e p a r t n e r s h i p s w i t h o r g a n i z a t i o n s t h a t c a n p r o m o t e P H a w a r e n e s s i n
C a n a d a . P H a d v o c a t e s w i l l h e l p t o e n s u r e t h a t P H p a t i e n t s a r e a l w a y s t h e
f o c u s a n d f o r e f r o n t o f t h i s p r o g r a m .
A c t i o n P l a n
P o t e n t i a l c a n d i d a t e s w i l l b e c o n t a c t e d ( v i a e m a i l ) w i t h a n i n v i t a t i o n l e t t e r
t o j o i n t h e E a r l y D i a g n o s i s T a s k F o r c e . U p o n r e c e i v i n g c o n f i r m a t i o n f r o m
i n t e r e s t e d c a n d i d a t e s , a l e t t e r o f a g r e e m e n t w i l l b e i s s u e d . T h e l e t t e r o f
a g r e e m e n t w i l l i n c l u d e t h e t e r m s o f t h e a g r e e m e n t , a s w e l l a s s p e c i f i c a n d
t i m e - d e f i n e d d e l i v e r a b l e s t h a t a r e e x p e c t e d o f t h e T a s k F o r c e m e m b e r s . T h e
f i r s t d e l i v e r a b l e w i l l b e t o e s t a b l i s h a c o n n e c t i o n ( s ) w i t h r e l e v a n t
o r g a n i z a t i o n s t h a t P H A C a n a d a c a n p a r t n e r w i t h . T h e a c t i o n p l a n f o r
p a r t n e r s h i p s i s d i s c u s s e d i n P r o p o s e d A c t i o n P l a n .
R e c o m m e n d e d D o c u m e n t s
v E D x P r o g r a m T a s k F o r c e E m a i l T e m p l a t e
v E D x P r o g r a m T a s k F o r c e R e q u e s t L e t t e r
v E D x P r o g r a m T a s k F o r c e L e t t e r o f A g r e e m e n t
Target Audiences
G e n e r a l P h y s i c i a n s / P r a c t i t i o n e r s ( G P s )
G e n e r a l p h y s i c i a n s r e p r e s e n t t h e f i r s t l i n e o f r e c o g n i t i o n l e a d i n g t o
d i a g n o s i s o f P H . I n o r d e r t o w o r k t o w a r d s t h e E D x p r o g r a m ’ s o b j e c t i v e o f
s h o r t e n i n g t h e d e l a y f r o m o n s e t o f s y m p t o m s t o d i a g n o s i s o f P H , t h e r e n e e d s
t o b e a n e s t a b l i s h e d a n d o n - g o i n g p a r t n e r s h i p w i t h g e n e r a l p h y s i c i a n s . E v e n
t h o u g h t h e r e i s a g r o w t h i n t h e n u m b e r o f P H t r e a t m e n t s a v a i l a b l e t o
p a t i e n t s , P H s c r e e n i n g i s n o t c o n s i d e r e d a s a f o c u s o n m a j o r i t y o f
p h y s i c i a n ’ s d i a g n o s t i c r a d a r s . T h u s , t h e E D x p r o g r a m s h o u l d a i m t o e d u c a t e
a n d c o n s t a n t l y k e e p p h y s i c i a n s a w a r e o f P H .
I n o r d e r t o d o t h i s , p h y s i c i a n s c a n e i t h e r b e a p p r o a c h e d i n d i v i d u a l l y b y
P H A C a n a d a o r t h e y c a n b e t a r g e t e d a s a g r o u p t h r o u g h o r g a n i z a t i o n s s u c h
a s t h e C o l l e g e o f F a m i l y P h y s i c i a n s ( C O F P ) , a n d i n t u r n n e t w o r k w i t h e a c h
o f t h e i r c h a p t e r s i n e a c h p r o v i n c e .

A n a l y s i s o f G P N e t w o r k i n g O p t i o n s
C o n t a c t G P s
I n d i v i d u a l l y
A d v a n t a g e s D r a w b a c k s
More control in the information dissemination
(what, how often, when, etc.)
Difficult to connect with a large number of
physicians in this manner
Direct contact and network established with
physician and future PH patients
If physician ends their term or commitment, we
have to start again to recruit another physician
Build a relationship with the GP and utilize for
conference speakers, articles in newsletters, etc.
Harder to attract physicians since PHA Canada
voice is still little and less known
C o n t a c t G P s v i a
O r g a n i z a t i o n s
A d v a n t a g e s D r a w b a c k s
Have > 32, 000 members (and growing) that can
be reached out to (achieve a much greater
information dissemination of PH)
Information dissemination will be secondary or
indirect from PHA Canada to GPs (to their
discretion)
COFP well established and has national
reputation we can use
PH is a rare disease so COFP may not be in full
participation at the level we are hoping for
(other diseases take priority)
R e s o u r c e s f o r G P ’ s
v N o t e p a d s
o T h e n o t e p a d s s e r v e a s a n e a s y r e m i n d e r t o o l ( a s w e l l a s a
f u n c t i o n a l o f f i c e t o o l ) f o r p h y s i c i a n s t o u s e w h e n t a l k i n g t o
p a t i e n t s a b o u t h e a r t / l u n g i s s u e s ( i l l u s t r a t i o n p u r p o s e s )
o R e c o m m e n d e d D o c u m e n t s : P H E D x P h y s i c i a n N o t e p a d
v B r o c h u r e s
o T h e b r o c h u r e s p r o v i d e i n f o r m a t i o n t o p h y s i c i a n s o n h o w t o
r e c o g n i z e , i n i t i a l l y d i a g n o s e a n d r e f e r p a t i e n t s t o P H c e n t e r s .
o R e c o m m e n d e d D o c u m e n t s : P H E D x P h y s i c i a n B r o c h u r e
v P o s t e r s
o T h e p o s t e r c o n v e y s t h e s a m e f r o n t - p a g e m e s s a g e a s t h e b r o c h u r e ,
i t i s g e a r e d t o w a r d s p h y s i c i a n s , b u t i s a p p r o p r i a t e f o r t h e
g e n e r a l p o p u l a t i o n a s w e l l
o I t w o u l d b e i d e a l t o h a v e t h i s i n t h e p h y s i c i a n ’ s w a i t r o o m o r i n
t h e i r m e d i c a l o f f i c e s w h e n s e e i n g p a t i e n t s
o R e c o m m e n d e d D o c u m e n t s : P H E D x P o s t e r
v M e m b e r s h i p w i t h P H A C a n a d a
o W e n e e d t o a d v o c a t e t o p h y s i c i a n s t h a t t h e r e a r e b e n e f i t s t o
j o i n i n g a s a P H A C a n a d a m e m b e r ( a r e a w e n e e d t o w o r k o n ) .
P o s s i b l e b e n e f i t s m a y i n c l u d e a c c e s s t o n e w s l e t t e r s ( P u l s e a n d
C o n n e c t i o n s ) , c o n f e r e n c e i n v i t a t i o n , a n d C M E a c c r e d i t a t i o n ?
E t c . )

I n i t i a l P r o g r a m P i l o t
5 G P - f o c u s e d c o n f e r e n c e s w e r e a t t e n d e d i n 2 0 1 4 - e a r l y 2 0 1 5 b y P H A C a n a d a
s t a f f . A t e a c h c o n f e r e n c e a n e x h i b i t w a s s e t u p a n d a d v o c a t e d P H b y P H A
C a n a d a . T h e f o l l o w i n g w e r e d i s t r i b u t e d a n d f o u n d t o b e v e r y p o p u l a r w i t h
p h y s i c i a n s a t t h e c o n f e r e n c e s : n o t e p a d s , p e n s a n d A d v a n c e s i n P H j o u r n a l .
G P s w e r e a p p r o a c h e d a n d a s k e d q u e s t i o n s r e g a r d i n g t h e i r k n o w l e d g e b a s e
a n d e x p e r i e n c e w i t h P H . T h e n o t e p a d s , p e n s a n d A d v a n c e s i n P H j o u r n a l
w e r e u s e d t o d r a w t h e a t t e n t i o n o f G P ’ s . I t w a s e x p l a i n e d t h a t t h e n o t e p a d s
c o u l d b e u s e d t o d i s c u s s a n y l u n g / h e a r t r e l a t e d d i s e a s e , a n d G P ’ s w e r e
a s k e d t o r e m e m b e r t o c o n s i d e r P H a s a d i a g n o s i s f o r p a t i e n t s t h a t f i t t h e
c r i t e r i a . T h e f o l l o w i n g s u m m a r i z e s w h a t k n o w l e d g e w a s l e a r n e d w h e n
i n t e r a c t i n g w i t h t h e s e G P ’ s :
N e x t S t e p s
T o e n s u r e t h a t p h y s i c i a n s a r e c o n s t a n t l y u p t o d a t e a n d a w a r e o f P H ,
c o n t i n u o u s e x h i b i t i o n t o t h e s e p h y s i c i a n - f o c u s e d c o n f e r e n c e s ( b e t w e e n 2 - 5 a
y e a r ) i s c r i t i c a l . T h e s e c o n f e r e n c e s w o u l d a l s o g i v e P H A C a n a d a t h e
o p p o r t u n i t y t o e v a l u a t e t o w h a t e x t e n t t h e E D x p r o g r a m i s a c h i e v i n g i t s
o b j e c t i v e . A d m i n i s t r a t i n g s h o r t s u r v e y s t o p h y s i c i a n s o n t h e i r k n o w l e d g e
a n d e x p e r i e n c e w i t h P H d i a g n o s i s , t r e a t m e n t , e t c . w o u l d s u f f i c e . T h i s E D x
p r o g r a m “ m u s t b e a m a r a t h o n , n o t a s p r i n t ” o f i n f o r m a t i o n d i s s e m i n a t i o n t o
p h y s i c i a n s ( a n a l o g y c r e d i t : R u s s e l l B o n a g u r o ) a s i t i s h u m a n n a t u r e t o
r e s p o n d b e t t e r t o i n f o r m a t i o n i f i t i s g i v e n i n i n c r e m e n t s , i n d e f i n e d t i m e
i n t e r v a l s a n d o v e r a l o n g e r p e r i o d , v e r s u s r e c e i v i n g a l l t h e i n f o r m a t i o n a t
o n c e a n d b e i n g e x p e c t e d t o r e c a l l i t o n a d a i l y , m o n t h l y o r e v e n y e a r l y
b a s i s . A l i s t o f a d d i t i o n a l d o c u m e n t s t o b e m a d e c a n b e f o u n d i n t h e
R e c o m m e n d e d D o c u m e n t s .
GPs
and
PH:
Viagra was the treatment some GP's referred to as an option
for treating PH; but majority were unaware of the treatment or
that there are 9 treatments in Canada now
The GP's are unaware of and not referring their PH patients to
PH centres - rural areas in particular face an issue of
georgraphy and cost; however, tele-health services are offered
in Vancouver. GPs in rural areas (and potentially urban areas)
need guidance on contacting /connecting with these services
Misinformation regarding the demographics of PH patiets, how
to identify and diagnose PH, and treatment options available
was common across the GPs

S p e c i a l i s t s
T h e s p e c i a l i s t s p r a c t i c i n g o u t s i d e o f P H s h o u l d b e c o n s i d e r e d a s s e c o n d a r y
t a r g e t a u d i e n c e s ( w i t h G P s a s p r i m a r y ) . S p e c i a l i s t s t o c o n s i d e r a r e , b u t n o t
l i m i t e d t o t h e f o l l o w i n g :
v C a r d i o l o g i s t s
v R e s p i r o l o g i s t s
v I n t e r n i s t s
v R h e u m a t o l o g i s t s
v H e m a t o l o g i s t s
v I n f e c t i o u s D i s e a s e S p e c i a l i s t s , e t c .
I n f o g r a p h i c s w o u l d n e e d t o b e d e s i g n e d t o c a t e r t o s p e c i a l i s t s , b u t t h e
o t h e r r e s o u r c e s m e n t i o n e d a b o v e f o r G P s c a n a l s o b e p r o v i d e d t o s p e c i a l i s t s
( e . g . b r o c h u r e s , p o s t e r s , a n d n o t e p a d s ) .
S i d e N o t e : N o n - P H S p e c i a l i s t s
N o n - P H S p e c i a l i s t s s h o u l d b e t a r g e t e d t o f u r t h e r e n h a n c e a n d g r o w t h e P H
c o m m u n i t y , a w a r e n e s s a n d e a r l y d i a g n o s i s o f P H . T h i s i s d i s c u s s e d m o r e i n
d e p t h i n t h e R e c o m m e n d a t i o n s .
N u r s e P r a c t i t i o n e r s ( N P s )
T h i s g r o u p c a n b e c o n s i d e r e d a s t w o t a r g e t a u d i e n c e s ; t h e N P ’ s t h a t a r e n o t
s p e c i a l i s t s ( o r e x p e r t s ) o f P H a n d t h e P H - N P s . F o r t h e l a t t e r , c o n t i n u o u s
i n v o l v e m e n t a n d n e t w o r k i n g w i t h t h e i r r e s p e c t i v e P H p h y s i c i a n s , c l i n i c a n d
p a t i e n t s i s n e e d e d a n d m u s t b e m a i n t a i n e d o n a r e g u l a r b a s i s . T h i s i n c l u d e s
g e t t i n g f e e d b a c k f r o m N P s r e g a r d i n g P H m a t e r i a l s e n t t o c l i n i c s , p r o v i d i n g
P H A C a n a d a m a t e r i a l f o r t h e i r p a t i e n t s / c l i n i c s , a n d i n v o l v i n g t h e m i n
e v e n t s s u c h a s W o r l d P H D a y a n d A w a r e n e s s M o n t h . F o r n o n - P H N P s , t h e y
a r e v e r y m o t i v a t e d t o r a i s e a w a r e n e s s o f a n y d i s e a s e a n d p a s t
c o m m u n i c a t i o n s h a v e d e m o n s t r a t e d t h i s a s w e l l . N P s a r e i n t e r e s t e d i n
c o n t r i b u t i n g t o P H a w a r e n e s s b u t n o t a t t h e e x p e n s e o f a g r e a t e r w o r k l o a d –
i t m a y t h e n b e b e n e f i c i a l t o u t i l i z e N P s f o r s p e c i f i c r o l e s a t c e r t a i n p o i n t s
i n t h e y e a r , i . e . H a v e N P s h a n d o u t p o s t c a r d s a d v o c a t i n g P H A C a n a d a
m e m b e r s h i p d u r i n g N o v e m b e r A w a r e n e s s m o n t h , c o m p l e t i n g a n a n n u a l
s u r v e y o n t h e i r p a t i e n t s , e t c . T h i s i s d i s c u s s e d m o r e i n d e p t h i n t h e
R e c o m m e n d a t i o n s .

Outreach
T h e E D x p r o g r a m w i l l ( i n i t i a l l y ) h a v e t h r e e m a i n a r e a s o f o u t r e a c h t o t h e
t a r g e t a u d i e n c e s i d e n t i f i e d a n d t h e y a r e :
1 . C o n f e r e n c e s
2 . W e b s i t e
3 . P u b l i c a t i o n s
C o n f e r e n c e s
P H A C a n a d a ’ s b i e n n i a l N a t i o n a l P H C o n f e r e n c e w i l l e x h i b i t t h e E D x
p r o g r a m i n t e r m s o f i t s a c c o m p l i s h m e n t s , g o a l s a n d a d v o c a c y f o r h e a l t h
p r a c t i t i o n e r s u p p o r t . I n a d d i t i o n , P H A C a n a d a S t a f f o r t r a i n e d a f f i l i a t e s
s h o u l d a t t e n d b e t w e e n 2 t o 5 n o n - P H c o n f e r e n c e s e a c h y e a r t o f u r t h e r t h e
E D x P r o g r a m . A t t e n d a n c e a t t h e s e c o n f e r e n c e s c a n b e i n t h e f o r m o f s e t t i n g
u p a n e x h i b i t / t a l k , a c t i n g a s a g u e s t s p e a k e r a n d / o r t o n e t w o r k w i t h h e a l t h
c a r e p r o f e s s i o n a l s . A l i s t o f p o t e n t i a l c o n f e r e n c e s , t h e i r d a t e s a n d t y p e o f
a u d i e n c e s h a s b e e n a s s e m b l e d f o r 2 0 1 5 - 2 0 1 6 . T h e c o n f e r e n c e s c h o s e n a r e
t h o s e t h a t a r e m e d i c a l l y l i n k e d t o P H a n d h a v e t h o s e h e a l t h c a r e
p r o f e s s i o n a l s i n a t t e n d a n c e t h a t h a v e t h e a b i l i t y t o m a k e a P H d i a g n o s i s
( i . e . G P s a n d s p e c i a l i s t s ) .
R e c o m m e n d e d D o c u m e n t s
v C o n f e r e n c e L i s t 2 0 1 5 - 2 0 1 6
W e b s i t e
T h e c u r r e n t w e b s i t e f o r t h e E D x P r o g r a m i s : S o m e t i m e s I t ' s P H
T h e s i t e i s n o t c u r r e n t l y l i n k e d t o t h e m a i n P H A C a n a d a s i t e , b u t i t w i l l b e .
T h e w e b p a g e n e e d s t o b e c o n t i n u o u s l y p o p u l a t e d w i t h m o r e i n f o r m a t i o n o n
P H n e w s a s i t a r r i v e s , a v a r i e t y o f P H s t o r i e s f r o m p a t i e n t s w i t h c o r r e c t
a n d m i s d i a g n o s e s , a n d r e s o u r c e s f o r p h y s i c i a n s t o u s e / r e f e r t o . T h e P H A
U S A w e b s i t e h a s a U n i v e r s i t y s i t e ( U - s i t e ) i n w h i c h t h e r e i s i n f o r m a t i v e
v i d e o s , p u b l i c a t i o n s , a s w e l l a s C M E c o u r s e s f o r a v a r i e t y o f t o p i c s i n P H
( p e d i a t r i c s , t r e a t m e n t s , e t c . ) C M E a c c r e d i t a t i o n i s a k e y a r e a f o r t h e E D x
T a s k F o r c e t o w o r k o n t o a t t r a c t t a r g e t a u d i e n c e ( s ) . T h e P H A U S A w e b s i t e
i s a g r e a t r e f e r e n c e a n d i f p e r m i t t e d , m a n y m a t e r i a l s c a n b e u s e d b u t a d j u s t
f o r C a n a d i a n c o n t e n t . T h e U - s i t e i s d i s c u s s e d m o r e i n : R e c o m m e n d a t i o n s
T h e P H A U S A U n i v e r s i t y w e b s i t e i s : P H A U S A O n l i n e U n i v e r s i t y
P u b l i c a t i o n s

E D x P r o g r a m F r a m e w o r k 1 0
M e m b e r s o f t h e E D x T a s k F o r c e w o u l d c o n t r i b u t e ( t h r o u g h o u t t h e i r t e r m )
a r t i c l e s / p u b l i c a t i o n s i n p e e r - r e v i e w e d j o u r n a l s a n d / o r o t h e r m e d i c a l n e w s
m e d i a . T h e a r t i c l e s s h o u l d f o c u s o n P H ( w h a t i t i s , w h o i s a f f e c t e d , e t c . ) t h e
c r i t i c a l r o l e o f p h y s i c i a n s a d o p t i n g P H i n t h e i r d i a g n o s t i c r o u t i n e ,
a d v a n c e m e n t s t h a t h a v e b e e n m a d e i n P H t r e a t m e n t s , e t c . T h e a i m i s t o
h a v e 1 0 p u b l i c a t i o n s i n w e l l - e s t a b l i s h e d a n d k n o w n j o u r n a l s / m e d i a o u t l e t s ,
w i t h i n t h e f i r s t y e a r o f i n i t i a t i n g t h e E D x p r o g r a m . T h e r e a f t e r , t h e E D x
T a s k F o r c e a n d P H A C a n a d a c a n a d j u s t t h e n u m b e r o f p u b l i c a t i o n s p e r y e a r .
E x a m p l e O r g a n i z a t i o n s w i t h J o u r n a l D a t a b a s e s
* P l e a s e n o t e , t h i s l i s t i s n o t e x h a u s t i v e ; i t o n l y s e r v e s a s a n e x a m p l e
P o t e n t i a l O p t i o n s
A s t h e E D x p r o g r a m d e v e l o p s , m o r e a v e n u e s o f o u t r e a c h t o t h e t a r g e t
a u d i e n c e s c a n b e e m p l o y e d . T h e s e a r e d i s c u s s e d m o r e i n - d e p t h i n t h e
R e c o m m e n d a t i o n s . S o m e i d e a s t h a t c a n b e e x p l o r e d i n c l u d e a g r a s s - r o o t s
c o m m u n i t y i n i t i a t i v e , i n w h i c h P H c o m m u n i t y m e m b e r s a r e g i v e n E D x
p a c k a g e s ( p r o v i d e d b y P H A C a n a d a ) t o t a k e t o t h e i r g e n e r a l p h y s i c i a n s i n
a n a t t e m p t t o r a i s e a w a r e n e s s o f P H i n C a n a d a . A n e x a m p l e o f s u c h a
p a c k a g e w a s c r e a t e d b y P H A N e t h e r l a n d s ( S e e : P H A E u r o p e P h y s i c i a n
E d u c a t i o n R e s o u r c e s . I n a d d i t i o n , i t s h o u l d b e c o n s i d e r e d t o d e v e l o p
r e s o u r c e s f o r h e a l t h c a r e p r o f e s s i o n a l s d i r e c t l y r e s p o n s i b l e f o r t h e
d i a g n o s i s c o n f i r m a t i o n o f P H ( e . g . r a d i o l o g i s t s , e c h o l a b s , e t c . ) A n i n f o -
g r a p h i c d e t a i l i n g w h a t t o l o o k f o r a n d h o w t o c o r r e c t l y c o n f i r m a P H
d i a g n o s i s c a n b e p r o v i d e d t o t h e s e l a b s i n o r d e r t o b e t t e r e d u c a t e a n d b r i n g
a w a r e n e s s o f P H a c r o s s a l l a s p e c t s o f E a r l y D i a g n o s i s .
• Canadian Association of Radiologists
Journal
Canadian Association of
Radiologists
• The Medical Post
Canadian Healthcare
Network
• Canadian Journal of Respiratory Therapy
Canadian Society of
Respiratory Therapists
(CSRT)
• Canadian Family Physicians Journal
College of Family
Physicians of Canada
• Patient Centered Intervention Network
Journal
Scleroderma Patient-
Centered Intervetion
Network (SPIN)

Partnerships
T h e E D x T a s k F o r c e w i l l w o r k t o e s t a b l i s h p a r t n e r s h i p s w i t h o r g a n i z a t i o n s
t h a t c a n s t r e n g t h e n t h e P H E D x p r o g r a m ( e . g . T h e L u n g A s s o c i a t i o n ,
C a n a d i a n O r g a n i z a t i o n f o r R a r e D i s o r d e r s , e t c . ) . A n a g r e e m e n t w i t h t h e s e
o r g a n i z a t i o n s w o u l d i n c l u d e ( a t l e a s t ) : h a v i n g t h e o r g a n i z a t i o n ’ s l i s t i n g
n a m e / l o g o o n t h e P H A C a n a d a w e b s i t e a n d o n p r o g r a m m a t e r i a l s . I n r e t u r n ,
t h e s e o r g a n i z a t i o n s w o u l d a l l o w u s t o p r o m o t e c o l l a b o r a t i o n a n d m e s s a g e s
t o t h e i r m e m b e r s ( v i a j o u r n a l p e r i o d i c a l s , e m a i l s , c o n f e r e n c e s , e t c . ) . A
p o t e n t i a l l i s t o f o r g a n i z a t i o n s c a n b e f o u n d i n t h e R e c o m m e n d e d D o c u m e n t s .
N . B . T h i s i s n o t a n e x h a u s t i v e l i s t .
P r o p o s e d A c t i o n P l a n
T h e E D x T a s k F o r c e m e m b e r s w o u l d s t a r t b y c o n n e c t i n g w i t h t h e i r c u r r e n t l y
e x i s t i n g n e t w o r k s i n a n y r e l e v a n t o r g a n i z a t i o n s i d e n t i f i e d a s p o t e n t i a l
p a r t n e r s . T h e p o t e n t i a l p a r t n e r w o u l d b e s e n t a l e t t e r i n t r o d u c i n g t h e m t o
P H A C a n a d a , P H a n d t h e E D x P r o g r a m . A n y i n t e r e s t e d p a r t n e r s w o u l d
c o n v e r s e w i t h t h e T a s k F o r c e m e m b e r s a n d i f a n a g r e e m e n t i s s o l i d i f i e d , a n
o f f i c i a l c o n t r a c t w i l l b e s i g n e d w i t h a l l e x p e c t e d d e l i v e r a b l e s . T h e r e l e v a n t
d o c u m e n t a t i o n c a n b e f o u n d u n d e r t h e R e c o m m e n d e d D o c u m e n t s .
N . B . T h i s i s a d r a f t a c t i o n p l a n a n d s h o u l d b e r e v i s e d a s n e e d e d .
Evaluations
A n e v a l u a t i o n t o o l - k i t i s n e e d e d t o d e t e r m i n e t h e e x t e n t o f s u c c e s s t h e E D x
p r o g r a m i s h a v i n g o n d e l a y o f P H d i a g n o s i s , a s w e l l a s a n e v a l u a t i o n o f h o w
a l l o f t h e o b j e c t i v e s w i t h i n t h e f r a m e w o r k a r e b e i n g m e t . R e c e n t l y , t h e i d e a
Outreach to Potential Partners
• Connect with current/established networks of relevant
organizations
Documents to Send
• Email Template of proposed partnership
• Follow up 1-2 weeks later
Deliverables
• Confirm with Partnership Agreement Document
• Initiate Timeline of Deliverables

o f d i s t r i b u t i n g s u r v e y s t o P H c e n t e r s i n q u i r i n g a b o u t t h e i r c u r r e n t P H
p a t i e n t s , a s w e l l q u e s t i o n s p e r t a i n i n g t o t h e d e l a y o f t h e i r l a s t 1 0 p a t i e n t s
d i a g n o s e s w i l l b e c a r r i e d o u t b y P H A C a n a d a i n p a r t n e r s h i p w i t h A c t e l i o n
P h a r m a c e u t i c a l s L t d .
T h i s t o o l - k i t w i l l b e f o r i n t e r n a l u s e , a s i t s m e t h o d o l o g y a n d s i g n i f i c a n c e
w e r e n o t d e s i g n e d f o r a n e x t e r n a l e n v i r o n m e n t . I t w i l l s e r v e a s a f o u n d a t i o n
f o r m e a s u r a b l e c o m p a r i s o n w h e n p l a n n i n g o r r e v i s i n g p r o j e c t s ( i t s h o u l d b e
r e v i s e d a s n e e d e d b y P H A C a n a d a ) . A t o o l - k i t h a s b e e n d r a f t e d t h a t c a n b e
p o t e n t i a l l y a d a p t e d t o t h e v a r i o u s p r o j e c t s o f P H A C a n a d a . T e m p l a t e s
d o c u m e n t s t h a t h a v e b e e n d r a f t e d a r e a l s o p r o v i d e d a n d a l l d o c u m e n t s c a n
b e f o u n d i n t h e R e c o m m e n d e d D o c u m e n t s .
Recommendations
N o n - P H S p e c i a l i s t s
A c t i v e l y t a r g e t i n g P H a n d N o n - P H s p e c i a l i s t s w i l l h e l p r a i s e a w a r e n e s s o f
P H a n d P H A C a n a d a . S p e c i a l i s t s c a n i n f o r m c u r r e n t o r p o t e n t i a l P H
p a t i e n t s o f t h e s u p p o r t s e r v i c e s t h a t a r e o f f e r e d b y P H A C a n a d a ( e . g .
s u p p o r t g r o u p s , v o l u n t e e r i n g , c o n f e r e n c e s , e t c . ) a n d h o w t h e y c a n b e c o m e
m e m b e r s o f P H A C a n a d a . I n a d d i t i o n , s p e c i a l i s t s c a n n e t w o r k w i t h o t h e r
s p e c i a l i s t s t h e y k n o w t o i n c r e a s e P H a w a r e n e s s . T h i s w o u l d b u i l d t h e P H
c o m m u n i t y , s t r e n g t h e n t h e v o i c e o f P H A C a n a d a , a n d h e l p f u r t h e r t h e E a r l y
D i a g n o s i s P r o g r a m o b j e c t i v e s a c r o s s C a n a d a . T h e s e s p e c i a l i s t s n e e d t o b e
t a r g e t e d w i t h r e s o u r c e s t h a t t h e y c a n d i s t r i b u t e / p r o m o t e t o p a t i e n t s t o
r a i s e a w a r e n e s s o f P H a n d a d v o c a t e o n b e h a l f o f P H A C a n a d a . E x a m p l e s o f
t h e s e r e s o u r c e s i n c l u d e :
v N e w l y D i a g n o s e d P H P a t i e n t P a c k a g e s
v P o s t c a r d s d u r i n g N o v e m b e r A w a r e n e s s M o n t h & W o r l d P H D a y
v P r o m o t e P H A C a n a d a m e m b e r s h i p f o r s u p p o r t g r o u p s , n e w s l e t t e r s ,
c o n f e r e n c e s , e t c .
v I n f o g r a p h s t a r g e t e d a t e a c h s p e c i a l t y
N u r s e P r a c t i t i o n e r s
N P s h a v e t h e m o s t i n t e r a c t i o n s w i t h p a t i e n t s o n a d a i l y b a s i s a n d a r e a l s o
g e n e r a l l y c o n s i d e r e d t o h a v e t h e m o s t e m o t i o n a l c o n n e c t i o n . T h i s d r i v e s
t h e i r m o t i v a t i o n t o w a n t t o h e l p o r g a n i z a t i o n s s u c h a s P H A C a n a d a ;
h o w e v e r , d u e t o t h e i r a l r e a d y h e a v y w o r k l o a d – t h i s c a n n o t a l w a y s b e
f e a s i b l e . I t i s r e c o m m e n d e d t o u s e N P s a t c r u c i a l p o i n t s i n t h e y e a r , w i t h
d e f i n e d a s k s t h a t a r e t a n g i b l e y e t s i m p l e f o r N P s t o e x e c u t e ( i . e . , t h e a s k s
d o n o t i n c r e a s e t h e i r w o r k l o a d ) . T h e f o l l o w i n g a s k s a r e p r o p o s e d :

P H A C a n a d a O n l i n e U n i v e r s i t y S i t e
P H A U S A h a s a n o n l i n e u n i v e r s i t y s i t e ( l i n k : P H A U S A O n l i n e U n i v e r s i t y ) .
T h i s s i t e i s c a t e r e d s p e c i f i c a l l y f o r p h y s i c i a n s , s p e c i a l i s t s a n d n u r s e s . T h e
s i t e o f f e r s r e s o u r c e s f o r h e a l t h c a r e p r o f e s s i o n a l s , a m o n g w h i c h a r e ( b u t n o t
l i m i t e d t o ) :
v A d v a n c e s i n P H J o u r n a l
v O t h e r p u b l i c a t i o n s f r o m r e l e v a n t p e r i o d i c a l s
v D i a g n o s i s a n d T r e a t m e n t i n f o r m a t i o n
v N e t w o r k i n g o p p o r t u n i t i e s w i t h P H a n d o t h e r s p e c i a l i s t s
v P H C o u r s e s ( D i a g n o s t i c s , T r e a t m e n t s , E t c . )
P H A C a n a d a s h o u l d u s e w h a t e v e r P H A U S A r e s o u r c e s a r e a v a i l a b l e t o t h e m
t o c r e a t e t h e i r o w n P H A C a n a d a O n l i n e U n i v e r s i t y s i t e i n t h e f u t u r e . T h i s
s i t e c a n t h e n b e p r o m o t e d t o p r a c t i t i o n e r s a c r o s s C a n a d a , a s w e l l a s
m e d i c a l s c h o o l s i n t h e c o u n t r y . T h i s s i t e s h o u l d b e c o n t i n u o u s l y u p d a t e d a s
m o r e P H r e s o u r c e s a n d r e s e a r c h i s d e v e l o p e d ; t h e E D x T a s k F o r c e s h o u l d b e
h e a v i l y i n v o l v e d .
C M E A c c r e d i t a t i o n
C M E a c c r e d i t a t i o n i s a g r e a t w a y t o g e t p h y s i c i a n s / n u r s e s i n t e r e s t e d i n P H ,
w h i l e p r o v i d i n g t h e m t h e d i r e c t b e n e f i t t h e y a r e l o o k i n g f o r . T h e E D x T a s k
F o r c e s h o u l d w o r k t o g e t h e r t o t a p i n t o t h e P H A U S A ’ s r e s o u r c e s a n d d e v e l o p
m a t e r i a l a d a p t e d f o r C a n a d i a n p u r p o s e s . O n c e d e v e l o p e d , t h i s s h o u l d b e a
k e y p r o m o t i o n a l t o o l a t c o n f e r e n c e e x h i b i t s , P H A C a n a d a N a t i o n a l
C o n f e r e n c e , a n d a m o n g t h e b e n e f i t s p r o p o s e d t o o r g a n i z a t i o n s a p p r o a c h e d
f o r p a r t n e r s h i p s . T h e r e i s m o r e i n f o r m a t i o n o n C M E a c c r e d i t a t i o n i n t h e
R e c o m m e n d e d D o c u m e n t s .
New and Current PH Patients
• Distribute postcards during:
• November Awareness Month
• World PH Day
• National Conference Month (before and during)
Advocate to all PH Patients
• Check the PHA Canada website for more information and resources
• Join support groups in the area
• Become a PHA Canada Member and get access to newsletters,
conference invitations, support and more.

Finale
T h e E D x P r o g r a m h a s p o t e n t i a l t o a c h i e v e t h e o b j e c t i v e P H A C a n a d a h a s s e t
o u t . I t w i l l r e q u i r e l o t s o f t i m e a n d p a t i e n c e ; h o w e v e r , i t i s k e y t h a t t h e
c o m p o n e n t s o f t h i s p r o g r a m ( E . g . T a s k F o r c e , P a r t n e r s h i p s , e t c . ) a r e
c o n s t a n t l y a c t i v e i n d i s s e m i n a t i n g i n f o r m a t i o n a n d a w a r e n e s s t o h e a l t h
c a r e p r o f e s s i o n a l s . C o n s i s t e n c y i n t h i s a r e a w i l l h e l p t h e p r o g r a m d e v e l o p
i t s n a m e a s w e l l a s c o m m u n i t y s u p p o r t . T h i s r e p o r t s h o u l d b e c o n s i d e r e d a s
a f o u n d a t i o n ( o r g u i d e ) a n d i t s d e l i v e r a b l e s b e m o d i f i e d a n d r e v i s e d a s t h e
p r o g r a m d e v e l o p s .

Recommended Documents
THE RECOMMENDED DOCUMENTS CAN BE FOUND IN
THE PHA CANADA DROP BOX FOLDERS:
ØPHA CANADA
o EARLY DIAGNOSIS
üEDX PROGRAM (2015)
DOCUMENTS:
1. EDX PROGRAM TASK FORCE EMAIL TEMPLATE
2. EDX PROGRAM TASK FORCE REQUEST LETTER
3. EDX PROGRAM TASK FORCE LETTER OF AGREEMENT
4. PH EDX PHYSICIAN NOTEPAD
5. PH EDX PHYSICIAN BROCHURE
6. PH EDX POSTER
7. CONFERENCE LIST 2015-2016
8. PARTNERSHIPS TEMPLATES (MULTIPLE)
9. EVALUATION TOOL KIT (MULTIPLE)
REFERENCE DOCUMENT: CME ACCREDITATION
RECOMMENDED – NEED TO BE MADE:
1. PH CENTRE REFERRAL INFORMATION
2. PH TREATMENT INFORMATION
3. PH 101 INFORMATION GUIDE

PHA Canada EDx Campaign Framework Report

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