Team Up! Team-based primary and community care in action

Patients are (of course) key members of primary care teams. In this episode Morgan and Sarah dive into the ‘patient role’ in primary care teams.
To prepare for this episode the ISU connected with a handful of patient advocates from across BC. Drawing on the stories and experiences from these interviews Morgan and Sarah weave together aspects of the patients role in teams to talk about 3 things:
  1. Patients involved in direct care
  2. Patients involved in supporting the system (Education Research and Advocacy)
  3. How to best support patients in the shift of primary care to team based care
The episode wraps up with a call to action that includes some great suggestions of things to try out in your teams to support patient engagement in planning, care and feedback.

Huge Thank Yous to all of our wonderful guests for this season! In this episode you heard from:

  • Marilyn Parker: Marylin is a Patient Advocate who is very involved in research related to Patient Reported Outcome Measures (PROMS) and Patient Reported Experience Measures (PREMS) in BC. Marilyn is a member of the Patient Advisory for the BC Primary Health Care Research Network.
  • Carolyn Canfield: Carolyn is the ISU’s in house patient-disruptor and adjunct faculty member in the Department of Family Practice at UBC. Carolyn is very involved in the Department of Family Practice and shares her expertise by teaching medical residents about patient experience and engagement She is also engaged in a number of national and international research projects that range in focus from patient engagement in care to system resilience, to patient safety.
  • Layton Engwer: Layton is a patient advocate and member of the Patient Voices Network (administered by the BC Patient Safety and Quality Council) who is very involved in primary care transformation. Layton engages at the provincial, health authority and local levels assisting in the introduction of Primary Care Networks and Team based Care in BC.
  • Darren Lauscher: Darren ****is a teacher, mentor and patient advocate who grew his activist and advocacy roles in the HIV sphere in the 1980s. He is an expert in patient engagement in research and system change. Darren sits at a number of tables as a patient partner, including the UBC health council, and systems and research tables.
  • Barbara Gobis: Barbara is a pharmacist and the Director of the UBC Pharmacy Clinic and the Operational Program Lead for Pharmacists in Primary Care Networks
  • Carmela Gracia-Patten : Carmela is one of the first kinesiologist working in Primary Care. Based in northern BC, Carmela is a team member with the Change Program, a lifestyle intervention program focused on metabolic syndrome (people with type 2 or pre-diabetes).
Resources and Links :

What is Team Up! Team-based primary and community care in action?

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.

An activist.

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.

Morgan: Yeah.

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.

I know.

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.


You're right.

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

Sarah: Right.

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

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

Morgan: Boom.


it is.

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.

Morgan: Yeah.

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.

Sarah: Great.

So we'll be doing one of these
episodes, every week and we

look forward to the next one.

Thanks for listening.