A podcast that brings together primary care providers, healthcare planners, patients, innovators and others to talk about the changes that are happening in primary care in British Columbia.
Morgan: are you looking forward
to the first full role focused
episode of this roll call season?
Are you trying to be more patient-centered
in your team are you trying to
bring your patients into being part
of their own primary care team?
Yeah, me too.
Marilyn: Patients are the
end users of healthcare.
And so it's so valuable when
everyone collaborates There's that
synergy that's gained in the care.
The continuity is gained, and the end
result is the best outcome possible for
the patient, that's what the patient
wants and needs that team focus.
Sarah: Marilyn Parker is a patient
advocate who's engaged in research in bc.
Having patient engagement in the full
spectrum of primary care from planning
to delivery of care to continuous
improvement is really important.
Morgan: Yeah, Sarah , in primary care.
I mean, everything revolves around our
care, relationships with our patients.
And so I'm glad that you
planned this season to start
off with patients in the center.
Sarah: And you know, it's funny, my,
my default was actually a start with
physicians and then I was like, no, you
know, we should start with patients.
Patients really do have this central role.
Morgan: You know, when we think about the
roles we're familiar with, nearly all of
us are also patients at some point, and
the role of the patient goes beyond just
receiving care that's being provided.
Sarah: That's so true.
You know, as patients, we also
have to follow through on whatever
the prescribed treatments are and
do the self-management work of.
Morgan: And, and beyond that, , we have
to advocate for the care that we do get,
Sarah: And we work with primary care
providers and team members to kind of
continuously improve care, give feedback,
Morgan: there's lots of times when
we're navigating the system ourselves,
trying to figure out where to go.
Sarah: and you know, patients are
really experts in their own care needs.
Morgan: And as patients become
experts, they start to educate
new healthcare provider.
Sarah: So for this season, we had the
opportunity to go out and connect with
several amazing patient advocates to
really gather their perspectives on the
role of patients in primary care teams.
Layton: I try and make a point not to
be like a special interest patient,
for lack of a better term, , but
I wanna be able to rely on that
knowledge and that understanding.
And if push comes to shove, I can say,
yes, I was a caregiver for three years.
I know exactly what it's like
and get into the gory details.
But I try not to do that because,
that's not why I'm there.
I'm there for the, the bigger,
broader interest of the community.
Morgan: So that was Layton Engwar.
You're gonna hear from him a few times
in this episode . Layton sits on a number
of different tables, both locally in
his community and provincially, and he
does an excellent job of highlighting
the importance of patient and also
the caregiver's engagement in care.
Sarah: And I love the way Layton is
so engaged in the work that he does.
We're also gonna hear a lot of this
from Carolyn Canfield, our own,
ISU scholar and patient disruptor.
Carolyn: having the patient as
part of the primary care team, , is
also having compassion for the
importance of , the services of
that team, focusing on that person.
And ensuring that as a team member,
efficiency of team operations doesn't
overcome the purpose of primary care.
Morgan: I love how in all of our
conversations, Carolyn always centers
back on the patient, bringing that
consideration of how that transition
of primary care to team-based care
needs to be communicated with patients.
Carolyn: you know, It is a challenge
because we're dealing with a
mindset, in the public of my doctor.
Single . is not a , I
have a family doctor.
I don't have a family doctor.
, the idea of having, , a team can feel
like diluting the care, the quality
of care so I think, , as we introduce
team-based care, it's really important
for the communication to be crafted
around each patient, each person,
Morgan: And here I totally
agree with Carolyn.
need to be able to talk with our patients
as we expand our teams so that patients
know the unique value of each team
member and of course care providers.
We need to know that value so we can
explain it, and that way patients
know why engaging with other
team members will improve their.
Sarah: So in this episode, we're
gonna dive into aspects of the
patient's role in primary care teams.
And let me tell you, we had so many
great conversations that cutting
everything down and figuring
out what to include was tough.
Morgan: Sarah, you've covered a lot
of ground with all these different
interviews, so set us up for this episode.
Sarah: So we're gonna
talk about three things.
First, we're gonna talk about patient's
involvement in care and in planning.
then we're really gonna think
about patient's involvement in
supporting the system through
education, research, and advocacy.
we're gonna wrap up thinking about
how to best support patients in a
shift of primary care to team-based.
And Morgan, when I think about the
roles of patients in the team, you
know, I, I started with a much less
active or engaged role in my head.
I'm not a provider, right?
I'm, I'm an anthropologist.
It's really easy to keep defaulting back
to the idea of patients as receiver of.
Morgan: Yeah, I, I think it is, and
even when we start thinking about being
patient-centered, that can start to
mean just deciding what's best for the
patient, which again, is still that very
traditional hierarchical relationship.
And I think that we can do different
when, when we're talking with
patients as partners in their.
Sarah: And I'm really interested
in thinking about what it means
to have patients as partners.
A common theme that kind of
emerged from our discussion with
patients is, , the role of patients
as experts in their own care.
And I had a wonderful conversation with
Darren Luc, patient, expert advocate.
And historically, if we look at
patient engagement and health and
research, so much groundbreaking
work happened in the HIV world.
And this is where, Darren
was coming from,
He was Sitting in a waiting room
waiting to see a specialist and
overheard a heated conversation between
a specialist and another patient.
Darren: And the specialist's response
was, I'm just trying to save your life.
This is all we have.
if you want to live, this
is how you have to do it.
And it was out the door slam.
. And I get it, sometimes our
relationships are tough.
They're not all beds of
roses and cherries, sometimes
they're pits and lemons.
But you have to figure out,
how can I go forward when I
don't have a lot of options?
And so it's about understanding,
its collaboration, respect.
It goes a long way.
They're the expert, but
you're also an expert.
And so it's about merging viewpoints
to have a shared common goal.
Learning that was a big
Morgan: This kind of collaboration is key.
Without the patient's collaboration and
care in the team, it's not gonna work.
Sarah: And you know, for this season of
TMF we had the opportunity to finally go
out and talk to providers from a whole
range of disciplines, . And this central
theme of recognizing the different
kinds of expertise held across teams
was something that we kept hearing.
Barbara: so any of our interactions
between pharmacists and patient is really
that meeting of experts to find a middle
ground or a common ground that can work.
so I often use the term expert patient
because , our patients are the experts
on themselves and nobody else is.
Morgan: patients really become
experts in their own care.
And this is particularly true
for engaged people with chronic
illnesses in a long history.
over the years, I've learned a lot
from my own patients about them and
about the conditions that they have.
As a patient myself, I've also taught
my providers a thing or too, but my.
Sarah: What we heard from patients as
we spoke to them wasn't just this idea
of the patient is expert in their own
care, but also, that really important
ability of patients to extend that
role, to include patient support more
broadly and how important it is for
patients to have support when they're
working on navigating a complex system
Carolyn: And one of the essential
elements, , that I don't have and that
I'm so conscious of needing is, , a
family member, a friend, a person
to accompany you to appointments.
a person who is intimately familiar
with what your health concerns are,
has a pretty good idea of what your
values are, who can be that lower
adrenaline person in the appointment
who to absorb the information
Morgan: And the point Carolyn
makes here is, is well taken.
Patients have to be informed.
to do that, they have to take in a
lot of information, and that can be
hard, particularly if they're in an
overwhelmed moment, like when they're
unwell or dealing with a tough diagnosis.
Sarah: And, it's so easy to have
that kind of sense of overwhelm.
, when you're knowing that you're
having an important conversation,
you're not able to listen.
And Carolyn really, described
this so well to me.
She described walking out of
an appointment , and having
lists in her head thinking like,
What was I supposed to do?
, she was alone in that appointment.
And having someone with her
would've been really valuable.
Morgan: Yeah, so having that help
to navigate and advocate is needed
for many of us at different times.
Sometimes that can be a formal team
member, and I think we're gonna get into
that in another episode, more often.
In particular today, it's a family
member or knowledgeable friend.
Layton: For friends and things like
that, I have been an advocate and I
have, pushed things when a caregiver
has to be there and listen and has to
be there to ask questions because the
person that's, receiving the care is just
overwhelmed with what's taking place.
Morgan: now not everybody has someone
like Layton or Carolyn that they can turn
to and when people don't come in with
that extra support, it can be really hard.
So having some extra capacity in
the team to help as a navigator for
patients who need that can be incredibly
valuable the navigator doesn't have
to be a healthcare professional.
It can be a peer.
Bringing in patients as peers can be very
effective way of improving primary care.
And Sarah, I know you love thing about,
building up capacity in primary care.
Sarah: I do, I love this question,
question of how to enhance adaptive
capacity and to support primary care at
multiple levels, team, community, system.
And it's really what gets me
excited the second season of the
team at podcast focused on these
tangible ideas, what could be
done to support system resilience.
So I'd encourage people to kind of loop
back and check that out if you haven't.
Carolyn: It may seem to a primary
care physician that teamwork is all
on their shoulders, but I'll tell you
that people who have skin in the game,
quite literally are the patients.
So the quality of connectivity and
continuity, and completeness , has
to be, most vivid for the patient.
. So when we're, we're building primary
care teams seeing the patient need as
the thread that ties everyone together,
, Sarah: and I love this idea that Carolyn
has here, you know, the patient as a
thread that ties everything together.
She just has such a great
way , of framing things.
So patients are clearly
directly engaged in care.
But it's important to remember that this
engagement also extends to planning.
Morgan: I'm biased, but community
health centers do this well and they're
often built around a patient-centered
planning process for the community.
CHCs, you know, generally will grow
out of a community identified need.
And over time respond to the
changing needs of the community
and the people that they serve.
In fact, many CHCs have patient run boards
and absolutely have patience on the board.
And so this way, at the highest
level, the needs, are right there
from the community, which is great.
And perhaps that's why CHCs
can be so responsive to local.
Sarah: Well, yeah, Morgan and I, I think
that, you know, that direct line into
the needs of the community is really
what allows ch h Gs to add so much
value and model the kind of, you know,
wraparound community-based, team-based
primary care that we're striving for here.
which is getting me excited about
a future episode on models of
care , as I'm thinking about this.
But now I'd kinda like to pivot our
conversation a bit to talk about
patient roles in supporting the
system, specifically in advocacy,
research and kind of system.
Layton: as the PCN was evolving,
nobody was happy with the original
terms of reference and I was probably
a proponent of not being happy with it
because the patient's role wasn't there.
The bottom line was this
isn't working too well.
We've got a lot of questions.
People are feeling unheard, and I
said, we should get somebody in to look
at governance so my persistence and
insistence gave way to a governance review
Sarah: And Layton really makes sure
this engagement happens at every table.
He really helps the groups.
He's engaged with return to a
patient-centered focus, and it can be
hard to be a patient in a room full
of providers and,, policy makers,
decision makers to, to be comfortable
to jump into that space is really.
Morgan: But the challenge is you
need to have somebody like Leighton.
Somebody who can step into that
advocacy role at a system level to
really talk about the need to support
patient-centered planning in a way that
people can listen to and act from.
Sarah: And you know, the idea of
patient-centered care has been
around for a long time, but there's
so many aspects of the system
that aren't patient-centered.
And, and we need to think more about
system level changes that are needed.
So it's not just making sure that people
have buddies to help them like we've
been talking about, but that are other
changes in the system to support people.
Layton: there's a quote that I use
quite often from the National Health
System something to the effect that
the health system is composed of many
caring and dedicated individuals, but
the system as a whole just doesn't
understand or look after the patient.
And that's where a lot of the patients
in this group focus on trying to get
the system to recognize the patient.
And the system, unfortunately, is not
really open to that kind of participation.
And I think what we have to do
is find a way that patients can
be accepted and participate in an
equal way and a meaningful way and
get away from them being advisors
or, a token on a tick off list.
Sarah: Layton is right.
We need to move away from the checkbox
approach to patient engagement.
the system, isn't necessarily open
to the kinds of patient participation
that are really needed, but I think
when you step back and ask, how
do you change a complex system?
Part of this has to come down to
engaging with learners and using
education as a leverage point
Morgan: I've been teaching for long enough
now that, people that I've taught are now
well established and patients are some
of the most memorable teachers, and I
often think the best thing I've done as
a teacher, Is to get the right patients
and have students see the right patients.
Patients are central to how
our training system works.
and both Carolyn and Erin are educators.
They teach in the classroom, and in the
clinics where they're receiving care.
my primary care provider it's a teaching
environment, so I regularly cycle
through the primary physician, the
family physician because it's a new
resident every six to eight months or so.
And, It is up to me to
create the continuity.
To provide the background.
Yes, of course the resident has my Chart
and can see my last few appointments
and what I do have a real affection
for the students, the learners.
Excited they are about
actually being able to practice
Darren: Getting a patient in
front of the class is huge.
Having sat on number of panels, talking
to med students or interprofessional mixes
of students is always amazing because
you will see in the eyes of some of the
students as they have the aha moment
and they're like, now I understand.
I get this.
Or, you've told your story and your
story is affected somebody so profoundly,
they're in tears in the audience and
you're like, ooh, didn't mean to do
that, but is this gonna make them
a better provider at the end of the
day because they connected with my
story to something that's happened in
their life and they can understand it.
Sarah: the patient role as an educator
is something that I think can get over.
We talked about patient engagement
and care, the role of the patient as
expert, as a navigator, as a supporter.
We also talked about, how patients
can be engaged in advocacy.
And I really think a great way to close
this loop is to shift back to the
action oriented focus that we like.
So let's talk about how to best support
patients in the shift team-based.
Morgan: I think that's important.
a, A key piece is getting information to
people, to patients about how the primary
care system works and how the primary
care team works, there's a real need
for open communication, both about the
current state and about the plan changes.
That'll help patients and if
patients understand both the gaps
and the glue that's needed, they
can be more proactive in their care.
Carolyn: it is the patient
who connects the pieces.
It's the patient who is the continuity
among all those team members.
For the patient, it is a team.
It has to be a team.
That's the only way it works.
It's the patient who knows both
the doctor and the pharmac.
, the pharmacist doesn't know that
particular doctor, and that
particular doctor does not know
that particular pharmacist.
Sarah: I love this idea from
Carolyn that the patient connects
the team by holding relationships.
And here I go again, bringing
everything back to relationships.
Morgan: I totally agree.
Relationships are important and
I think it shouldn't be just the
patient that holds the relationships
across their circle of care.
The relationships across the
team members, the pharmacist.
And the physician, et cetera.
Wouldn't it be really cool
if that was also happening?
Sarah: And for that to happen, you need
to create these opportunities for teams
to work together on how they wanna work
together and build those relationships.
It shouldn't be, it shouldn't be all on
the patient to hold the relationships.
I think that's, that's a, that's
a really good distinction.
Morgan: it, And it often is today that.
That I don't know that pharmacist,
but when I do know the pharmacist
and Jim and I chat, it's a stronger
care process for the patients.
Sarah: Well, and there's so much
value in knowing people, right?
And getting that sense when you walk into
a place, the first person you see walking
into a clinic is, is often the moa.
It's not surprising to me that in kind of
a lot of our conversations with different
team members, the role of the MOA as this
Key relationship cornerstone,
kept coming up again and again
Carolyn: the way I see the team,
of all, the, medical office
assistant, she knows me by name.
She's always got a
happy tone in her voice.
She works miracles, , I feel that she's
my advocate within the healthcare team.
If I have a in-person appointment,
she, again, greets me warmly
and, obviously respects who I
am and sees me as an individual.
And, and that's really important
Morgan: that direct connection to patients
is key, and MOAs have a huge role on that,
but other team members can do it too.
Carmella is a kinesiologist in
primary care, one of very few,
and we got to speak with her.
she spoke about the importance
of connecting with patients
to build trust as well.
Carmela: I really like the aspect
of team-based care because different
personalities resonate with different
personalities, the patient has all the
information we need to help them be
successful, because they know their
lives the best, and it's just a matter
of when they're comfortable sharing that
and who they're comfortable sharing with
Sarah: Building off this idea of open
communication to really support the
development of relationships, I also think
there's a real need to clearly communicate
the whole idea of transformation
to team-based care to patient.
Carolyn: It is very easy for a patient
to hear Medical doctors say, from
here on, it just makes sense for you
to be seeing the physiotherapist as
the primary contact with our team.
Be assured we're all gonna
be talking to each other.
This is great.
The information's shared.
You'll probably get appointments
more easily with them than with me.
It's really easy for the patient
to think, I'm being tossed
Morgan: So it's a change this shift
from I have a doctor to, I have a team.
It came up even just this morning in a
meeting, , for a project called Our Care
that we want to talk about what people
thought about primary care and there was
some pushback that say people don't know
what primary care is, they know what a
family doctor or what a nurse practitioner
is, but they don't know what primary care
Morgan: And part of that reason
for that is we aren't seeing this
much in the public communications.
Sarah: I think that's something
that we hope to be able to support
through team-based care bc.ca.
And a lot of the work that,
that we're engaged with, that's
happening through kind of BC's
team-based care advisory as well.
And, and in the team up kind of community
of practice that we're creating here.
it really is a gap.
Morgan: And I think that gap can be filled
both with more formal communication that
within the team, how we talk about team
members, but also across peer networks
of patients to help others understand
primary care, what it is and how it works.
Carolyn: so connecting me up to patients
who feel comfortable talking about their
condition, who would like to share with
other patients, what's it like living
with, whether it's high blood pressure
or cataracts or whatever, it's having
a bit of insight into what's ahead for
me or what are some of the consequences
that maybe I haven't thought about
it's a great cost savings, of course,
to the health system to have patients
sharing their experiential knowledge,
Sarah: there really is a learning
curve to any kind of transf.
With the understanding that patients
are team members and this new sort
of way of delivering primary care is
different, there's also gonna be a
need to spend some time and effort as
a team, learning how to best engage
with patients in team-based care.
Morgan: And we agree that
the patients are central.
In primary care teams, and as
primary care in BC continues this
journey towards team-based care,
there's , some teams, of course,
that are working better than others.
And Darren's highlighted this, , to
really see some of those key differences.
Darren: there are some teams that
are highly functional . Everybody
understands their roles.
They understand the end point,
the goal of what we're trying
to accomplish or research.
And then there's other teams where
some of the players are new to process
and don't understand their role yet.
Sarah: And really Morgan, the
importance of role clarity in teams.
It's kind of the motivation
for this whole season
And I know that, we are both gonna
learn a ton going forward and I hope
that everybody listening will as well.
Sarah: So today we've talked about
the patient role on the team,
and we've really covered a lot.
We've talked about patients involvement
in direct care and planning, with patients
as experts, navigators, and supporters.
Sarah: We also talked about
patients involved in supporting
the system through engagement in
education and research and advocacy.
Morgan: And then we've just sort
of looped back at the end here and
chatted about being patient-centered
and, and how best to communicate
this shift in primary care to more
of a team-based primary care model.
Sarah: going back to the idea of bread
and roses that we first introduced
in episode one, the efficiency side of
how to address the primary care crisis
and, the role of the patient needs to
be part of that, but for the patient
to be able to fulfill their role in
a team, the relationship piece, that
trust really has to be there as well.
So here's our kind of
calls to action for today.
First, think about how the
transformation to team-based care
is being communicated to the public
and to the patients you work with.
Try using team language whenever possible.
Morgan: And then create opportunities
for connecting and learning
across the team and do that in
a way that includes patience.
So that can be just, I've talked
about it before, the warm handoff.
one of those very simple things that
you can do is not just say how wonderful
your other team member is, but ask
a question that , they can answer.
So ask a nurse how they would approach
something and get an answer so you're
learning along with the patient
about the value of your team member.
And then, you can think about patient
networks as well within your practice.
Sarah: Our last suggestion here is
to really think about how you ask for
feedback and what you can do to create
trust and build relationships to
support meaningful patient participation.
Something you know, really
simple like asking patients
how their visit's been so far.
If there's anything that could be improved
for next time, that can be a great start.
Morgan: And that's also
a very clever segue.
Asking for feedback from the audience.
It'd be great if we could hear from you,
to get some ideas about things you'd want
to cover in this season around roles.
And, we'll definitely do our best
to incorporate those any comments
you have into future episodes.
So we'll be doing one of these
episodes, every week and we
look forward to the next one.
Thanks for listening.