James Watson: Today, you will
hear the views and ideas of our
pozcast guests. We are eager to
showcase their expertise and
provide a platform for their
views, but they may not always
reflect or align with the views
of The Positive Effect or the
MAP Center for Urban Health
Solutions.
Welcome to the
pozcast. We are created by and
for people living with HIV. On
each episode, we explore what it
means to be poz. We challenge
the status quo and we share
stories that matter to us. I'm
James Watson and I'm
HIV-positive. If you're living
with HIV, listen up.
Today on pozcast, we're going to
take a deep dive into the role
of Peer Researcher or Peer
Research Associate. Now, the job
title itself isn't without
controversy, but we'll get to
that. So Peer Research
Associates or PRAs are community
members living with HIV or AIDS,
not accredited in research, but
trained by the research teams to
work in one or multiple phases
of a research project. And this
is a position that's held in
very high esteem in HIV
community-based research. And it
comes with some high
expectations from all parties.
But does the role deliver?
That's the question here. In
this two-part series, we're
going to take a closer look, a
hearing from a number of peer
researchers and researchers from
across Canada. I'm really
excited about this episode. And
so grateful to all my guests and
PRA contributors for expressing
themselves so candidly. We have
to have these challenging
conversations if we're going to
make positive change.
You know, this whole experience
of putting the show together, it
makes me—well it makes me a
little bit emotional. My first
job in research was as a peer
researcher, and I can honestly
say that the role and work not
only changed my life, but saved
my life. I came to understand
that as peer researchers, we
were central to the success of
the work we were doing, that my
lived experience as a person
living with HIV was for the
first time valued. My experience
was considered expertise. And I
soon discovered that the common
experience of living with HIV,
regardless of race or ethnicity,
gender or culture, or any other
social construct, was a shared
life experience of profound
importance to me. I was home.
The peer research has evolved,
and everyone's experience is
different. There are
practicalities to consider, food
to put on the table, bills to
pay, you know. Is the personal
fulfillment you get from this
role worth the precarious
employment? So to help us sort
through all of this and more, I
had the opportunity to speak to
two standout peer researchers,
Lynne from Ontario, who's worked
on numerous large scale HIV
community-based research
projects, and Tim Wesseling,
who's a peer research associate
at the British Columbia Center
for Excellence in HIV and AIDS
in Vancouver. Hi Lynne. Hey, Tim
Thanks for coming on the show
today.
Lynne: Hey, James. Thanks for
having us. Hi, Tim.
Tim Wesseling: Hey, James. Hey,
Lynne. Really excited to be
here.
James Watson: So we have a lot
of rich peer researcher and
lived experience around the
microphone today. And I've been
really looking forward to this
conversation, so let's just dive
right in. I've asked several
peer researchers across the
country to record their
responses to a few questions
I've had about the PRA role. So
let's start a conversation by
hearing from Kim in Alberta, and
I'll get your reaction.
Kim Samson: Hi, my name is Kim
Samson. I've been a peer
researcher for the past four
years, I've worked on a few
different projects with
community-based research out of
Calgary, Alberta. I enjoy
working as a peer researcher,
because I want to help eliminate
the stigma and discrimination
that people living with [HIV]
deal with every day. I know a
lot of people living with are
not living to their full
potential because of the stigma
monkey on their back in their
minds, and from the public's
lack of knowledge of HIV.
James Watson: So Kim highlights
sort of an altruistic motivation
for wanting to be a peer
researcher. She wants to help.
And I've heard that from a lot
of peer researchers, and I'm
wondering if I can get your take
on that, Tim? Like, what drew
you to peer research work?
Tim Wesseling: Great question.
100% is about giving back for
me. My story was, you know, not
being connected to the
community, falling out of health
care, and then finding the
community that brought me back,
organizations that linked me to
volunteering that ended up
giving me a position as a peer
researcher, and I feel like it
is upon me to help others. And
do things that help connect
people that, you know, make
research about us for us and
improve access to health care.
James Watson: Right. And so do
you follow the same line of
thought there, Lynne, with your
approach to research?
Lynne: I always feel bad when I
answer this question, because I
never sound quite as altruistic
as everybody else. But honestly,
I started this job because it
was a job. A friend of mine who
lived in Kingston and I saw this
job posting through the Ontario
HIV Treatment Network for peer
researchers, and we just decided
that we were going to apply. And
so we went through the whole
process of like sending in
resumes and doing follow ups and
doing interviews and waiting.
But for me, in the beginning, it
was a job. I hadn't had a real
job in 10 years and like money,
it was money. It was the probe.
Yeah. And it was only until I
had been in the job for a while
that other benefits became
apparent to me.
James Watson: Do you think
you're making a difference in
the lives of people living with
HIV, Lynne?
Lynne: I think I am, I think
enter in maybe in a more
roundabout way, most of the
time. I think that the research
that we contribute to and are
part of and make happen, I think
creates change for PHAs. I'd
like to think and I hope that
like having the opportunity to
talk to someone who knows—who
has lived experience and knows
where they're coming from, makes
a difference in their life. But
from my point of view, I think
the biggest thing is being a
part of the research, and the
research creating change.
James Watson: Right. What about
you, Tim? Do you think that you
are making a difference in the
lives of people living with HIV
by doing what you do?
Tim Wesseling: When I started
doing this job as a peer
researcher and doing interviews,
I never knew that that's what I
might be doing. I was providing
a safe space for people to come
in. And for, you know, for us to
collect the information. As that
changed, I found that I was
being invited to be part of
different roles in the research
process, designing research
questions based on my own
feelings and my own experience.
And I was able to present some
of these ideas at you know, the
Canadian Conference on AIDS—the
CAHR conference. And I went out
and I presented some of these
ideas at a, you know, local,
AIDS service organization. So I
feel like I am making a
difference in the in the lives
of people living with HIV by
sharing my experience and really
being involved in the research.
So it's more, it's applying more
directly to my community, from
my eyes, through my eyes and
through the eyes of our
community.
James Watson: Right, right. So I
just want to get your take on
what George says another peer
researcher.
George: Hi, my name is George.
And I've been living with HIV
for over 20 years. Along with
that I've been homeless, I've
experienced a number of
different experiences in my
life, which led me to become a
peer researcher. Why did I
become a PRA? One of the reasons
for me was a little bit of a
selfish reason, because I get to
learn from other people, I get
to hear other stories, I get to
encapsulate them into my own
life experiences. And I also get
to share my life experiences
with other people as I speak to
them, also. So it becomes a two
way highway of thoughts,
feelings, emotions, and it helps
I think, both parties, because
they're not alone, I'm not
alone. And we learn how to deal
with what's being discussed, we
learn how it's impacting us in
our lives. And for me, that's
important because it helps me
become a better person. It helps
me in my daily life. It helps me
learn what can I do in the
future also, and how I feel that
I've helped somebody by telling
them my lived experiences, my
experiences of what's happened
to me and how I've overcome any
social or economic challenges
within the time period.
James Watson: So reflecting on
what George said, Lynne, what's
the value of the peer to peer
interview experience?
Lynne: I think it almost
immediately when you sit down
with a peer there's like a sense
of a deep breath, a deep breath
and a relaxation that like it
doesn't matter what I say the
person I'm talking to
understands what I'm talking
about. The little codes that we
speak in are okay, you know, I'm
in a safe space. And I think
that all the PRAs work really
hard to create safe spaces for
their participants to be able to
share. Because a lot of times,
like a shockingly large amount
of times, you're talking to
people who have no one to talk
to, and who have no one to be
100% honest with. And it's like,
it's just such a, like a
releasing breath to be with
someone who understands.
James Watson: Right. Would you
agree with that, Tim?
Tim Wesseling: Yeah, I would
agree. I mean, providing the
safe space is just—is the basic
thing that we do, whether it's
in an interview, or you know,
during a presentation. But
what—in terms of what George
said, I am peer, but I have my
own story. The person sitting
across from me are the other
people, they also have their own
story. And that adds to the
richness. And I feel like as
much as I can share my
experience, and hopefully
somebody will gain some insight,
I'm also doing that at the same
time. And I feel that has also
improved my life and I've
learned some things and some
tricks and whatever. You know,
living in addiction, I could not
do that alone living with HIV, I
could not do that alone without
hearing stories or sharing these
experiences. So this is what's
happening exactly while I'm with
participants in the study.
James Watson: Right, right. So
what do you think is the most
important element of the work
you do?
Tim Wesseling: I think the most
important element of the work I
do is just connection. I am
providing connection to the
participants in the study, I'm
providing that connection to,
you know, the research team, I'm
representing the team, and I am
the liaison. Because I
understand it—I get it. And I
worked with researchers and you
know, I shine the light on
something that they've never
even considered, which has made
me feel strong, because I never
felt that I grew up with a lot
of skills in my years of not
working, living with HIV. And I
have these skills. And this is
what I'm bringing.
James Watson: Right. So do you
think most investigators on a
research team also see this
connect—your connection to
communities being the most
important quality of the work?
Tim Wesseling: I think I think
it's one of the quality—one of
the things for sure, because I
know I have some eyebrows have
been raised when I've been able
to sit in a data/analysis sort
James Watson: Right. What do you
say to that, Lynne? What is the
f meeting and I'm sort of the to
en peer, but then I'll say "hmmm
.." this and this, and they are
urprised to see what I am brin
ing.
most important element of the
work that you do?
Lynne: I think that actually Tim
hit it on the nose. I look at it
in a little different angle, but
I think that the connection is
the biggest thing. I see us as
conduits or bridges between the
community and the academic
researchers. And that it is our
responsibility to bring as rich
and as full data as possible to
the researchers in order to
respect the participants'
stories and the participants'
experiences. Because even if
we're asking like quantitative
questions, there's a story in
there somewhere. Someone's story
is reflected in those numbers.
And I think it's really
important to treat those those
stories and numbers with
respect. And how I treat them
and how I present them to to the
primary investigator or whoever
is a crucial part of the
process.
Tim Wesseling: Yeah, thanks,
Lynne. I totally agree with
that, but I think aside from
what we do as a participants and
relating for the participants
experiences to the research, I
think we also are there to
represent other peers in terms
of the role of the peer
researcher to strengthen and
guide researchers and what value
we have and how we need to be
included in all parts of the
research. So I think it's also
we need to be helped help steer
what we we as researchers are
doing.
James Watson: Right. And that's,
I wonder, you know, often like
the meaningful engagement part
of the work that you do often
falls to the peer researcher.
Constantly sort of advocating
for your own engagement. Does
that get tiring?
Lynne: I think, I think that a
lot of times—going back just one
step. I think that Tim and I
have different experiences
coming from different provinces
and working with different
primary investigators. So it
sounds from what like Tim is
saying that our experiences are
different, and maybe the way we
look at things are different.
But I found that there are a
surprising number of peer
research, or not peer
researchers, but primary
investigators who say that
they're invested in MEPA and
GIPA, and like value peer
researchers, but I don't think
they actually do. I think that
what they see is an opportunity
to have community input, but
they don't recognize like how
strong we are and what potential
we have to help them. I think
that there are a lot of people
who unfortunately don't see
that. So sometimes we're
involved in projects where we
are just tokens, and it's like,
you know, data collectors. And
I've been lucky, because the
majority of my experiences have
not been like that. But I also
think that's because I've always
worked with really strong peer
researchers who have very strong
voices about what they want to
be involved in.
James Watson: Do you want to
comment on that, Tim?
Tim Wesseling: So you first were
talking about, you know, is it
tiring, you know, to be in the
position we are with, with
researchers, and I do feel like
things are very siloed. I'm just
in my position in my study, and
I don't feel I have a lot of
connection or awareness to what
Lynne's doing, to what other
peer researchers are doing and
different studies across—and I
think that there is something
that I've been—it's a bit of
back of my mind, is trying to
create sort of a peer alliance.
I feel like we need to sort of
get together, learn from each
other, support each other if
there needs to be more fighting
to get a, you know, a
standardization of what a peer
is. I was sitting just recently
on a peer reviewer for the
Canadian Institutes of Health
Research on community grants,
snd what I noticed from the from
the different grant proposals
was different ways that they
included PRAs in their proposals
and how they valued them. Some
people would value them really
well and pay for the services,
and then other things was just
sort of token thank-yous or
whatever. So there really is not
a really defined role of what a
peer researcher is in Canadian
health research for HIV, and
that is something that I really
think needs to be strengthened
and looked at.
James Watson: Do you think there
should be like a commonality
across provinces, like this
would be some sort of like a
union or something like that?
Tim Wesseling: I totally—I like
a union or alliance. And I think
they're, you know, there should
seem to be a base understanding
or value to what we do, or how
we are, you know, how we are
paid how we, you know, get
contracts or, you know, all
these aspects of what it is to
be a job as a peer researcher.
And including the flexibility
that needs to be around there
for working with peers, I think
should be really evaluated and
studied, for sure.
James Watson: How do you feel
about that, Lynne?
Lynne: I wouldn't be afraid that
that would take away from the
peer part of it, like we would
become professionals. And we all
I think, have lived through
times where like, agencies have
professionalized and roles have
professionalized, and I'd be
afraid that that would take—that
would happen to us. I think it's
a good idea, but I'm a little
wary about it.
James Watson: What do you mean
by professionalized?
Lynne: I think that we'd have
like a job description that we
couldn't get out of. One of the
things I really like is the
flexibility of what we can do,
depending on who we're working
with. And the fact that we can
make decisions about who we want
to work with a lot of times. I
know that I've worked with some
researchers that I wouldn't work
with again, and I've worked with
some researchers that I
absolutely, like, would be the
first knocking at their door
saying, "Pick me Pick me." But
there is something about the
fact that we are not
professionals, that we are part
of the community, that I think
makes us kind of conduit. And I
worry about leaning too far one
way, if we became unionized
or...An alliance I could see as
one thing like, coming together
and learning from each other,
because one of the things I find
the most fascinating is how each
PRA has their own interpretation
of like, what is important to
them, and what is the most
important aspect of the role.
And I think if you brought
everybody together and discussed
it, it would be an incredible
conversation.
James Watson: You know, it's
interesting, as a peer who you
are as a person matters. Like
how you are a peer to others,
your peerness, is your currency
in a way. So can you speak to
how it feels to use your
identity as a job qualification
or as a commodity in order to
get work, Tim?
Tim Wesseling: As soon as you
said my identity, I was thinking
about moments when I've been a
peer when I am telling my story.
And I feel like that has come
across in so many aspects, when
I'm sitting with a participant,
when I'm relaying just something
to, you know, the study
coordinator, or when I'm doing a
presentation, I get very, very
emotional. And this is—I feel
like this is, this is my
currency. This is the part that
is maybe missing in research, is
the connection to people's
experiences. And it's something
that I'm—I have no control over
and I have a box of Kleenex is
with me now—because it is
something that when I do try to
make a point, and it is very
personal to me, you can see that
and I think that this is
something that we as peers do.
James Watson: Right. Is that
something you give generously,
or if it's something that is
taxing on you?
Tim Wesseling: It is, it's hard,
because— I'm even feeling it
now—I just worry that, you know,
sometimes, oh, I'm just like,
I'm taking up these people's
time and they're, they're
looking at me crying and
whatever. But it's like, you
know, I have never gone through
one of these things, or a moment
or presentation where someone
has not come up after and said,
Thank you for doing that.
Because I think—and that is when
I feel accredited for what I'm
doing. I feel like this is why
I'm here. You know, and so I
keep doing it, and it won't tire
me out.
James Watson: Right. Okay.
Tim Wesseling: But I will stock
up on Kleenex.
James Watson: What about you,
Lynne? Like, how do you feel
about using your identity as a
job qualification, in a way?
Lynne: I don't think I do. I
don't think I do. Like the more
I listened to Tim speak, the
more I think that like we're
perfect—Tim and I are a perfect
team, we're like two sides of
it. I don't think I use my
identity as a commodity. I think
I use my skills and my knowledge
and hopefully my reputation as
the commodity. It's like I come
in as what I can bring you how I
can make your research better.
Because I think that differences
in opinions and how people look
at things, I think the most
important thing, in the whole
research slash peer research
process, is the actual data—is
the research. I think that we
bring data to the researchers,
that helps create evidence-based
research that incites change.
And I think that is the most
important part of what we do,
the most important part of our
role. I think that secondary to
that is the relationships we
build and the empowerment,
hopefully, that we bring to our
communities, and to the
individuals in it. But I think
that the number one part of our
job is to help create research
that incites change.
James Watson: You want to
respond to that, Tim?
Tim Wesseling: Yeah, I feel a
little conflicted, Lynne, you
mentioned, you know, the job
becoming more professional, and
I cannot separate my identity
from my peerness and from being
a peer researcher. And I've been
invited, as my one current study
is sort of slowing down, I've
been invited to another study,
which is on the Downtown
Eastside of Vancouver. And I had
to sort of re-identify what my
peer connection is to this
community, because it's not
HIV-focused. I have had to sort
of evaluate myself, like how am
I a peer to this community?
Because yes, they are wanting
data. Yes, they're wanting me to
use my skills as a, you know, an
interviewer and all these
things. But I had to go through
a process, can I do this,
because this is not the
community 100% that I identify
with. And that's my identity. So
that's where identity I think is
really a strong part of the
reason I'm doing the work. I am
doing this next work, because I
have had many challenges in my
life. So I do think that that is
where I'm connecting to the
people in this next study.
James Watson: Right.
Lynne: I think there comes the
question about the term peer,
and whether or not the term peer
should be used. It's like, I
don't think that we necessarily
have to be, quote, unquote,
peers, to be able to do our jobs
as well. I think that there's no
question that you could go into
a community that you don't
identify with as strongly and
have excellent results because
of your skills and because of
your professionalism and, and
because of everything that
you've learned in the time that
you've been doing this job. I've
no doubt at all. And I think
there, using the term peer,
almost becomes a drawback
because it's like, if you're not
part of this community, then you
can't identify as a peer and be
a peer researcher.
Tim Wesseling: I think this is
why I—the idea in the back of my
head about a peer alliance,
where community organizations,
AIDS-based organizations could
make aware of an alliance of
peers being involved in
volunteering and research, and
other roles would create a pool
of people. I always find that
when a new study comes up is
like, Do you know anybody who
would be—who might be interested
in or has some skills are doing
this? This should be already set
up, I think it's upon us to sort
of develop something so that we
can have like a LinkedIn for
peer researchers that we can
share ideas, we can grow, we can
learn from each other, you know,
what is this person doing? What
is that person doing? But also,
you know, given the current
state where people can be
working remotely, we can involve
people in peer researchers from
all over. You don't have to be
local.
James Watson: I want to go back
to the economics really, of
working as a peer researcher, I
want to play you this clip from
Michael, and have you reflect on
what he says.
Michael: Hi, my name is Michael.
I'm a peer researcher for the
Ontario HIV Stigma Index. I've
been in this role for just over
three years. I became interested
in becoming a PRA for a few
reasons. One of them was I want
to reconnect with my community,
and to see if there are people
out there feeling the same way I
was. Which kind of brings me to
the second reason I wanted to
become a PRA: I wanted to learn
more about my own stigma, and
how I could become a stronger,
more confident person so I can
manage the stigma that I felt,
and to hopefully help someone
else with their own HIV stigma.
I would love to continue on with
this role. I guess the only
thing that I would say that I
would love to see change is more
of like a full-time position, so
I can become more fully immersed
into the role and hopefully
cause some solutions and provide
some real change.
James Watson: So listening to
Michael talk about his
employment status, I wonder,
Lynne, are you considered a
contract worker? What's your
what's your employment position?
Lynne: I think I'm contract
worker.
James Watson: Contract worker.
Lynne: An episodic contract
worker, yeah.
James Watson: Okay, what about
you, Tim?
Tim Wesseling: I am. I just
signed another full year
contract.
James Watson: So you're
contract. So I mean, what's your
ideal? I mean, PRAwork can be
piecemeal, right? And many
people have other jobs or rely
on government supports to create
a livable income, and there's
like feast and famine for you
know, getting your income. So I
wonder how do you manage that?
How do you, how do you create a
livable income for yourself?
Lynne: Great, great, great
difficulty. Great difficulty. I
have to say. I get ODSP, so
anything extra...
James Watson: What's ODSP?
Lynne: Oh, sorry, Ontario
Disability Support Program. So
anything extra I earn has to be
reported to them. They take
their chunk off, if I earn too
much one month, I risk being cut
off. If I don't turn anything,
the next month, I risk being cut
off because why did I not work
this mont if I work last month?
Then it's like, it's it is
insane. It is crazy. And I think
kind of one of the things that I
appreciate the most and, and
respect the most about seeing a
group of PRAs together is how
they kind of work with each
other and give each other
advice. And how to navigate ODSP
and earning income is something
that we talk about all the time.
Like how to work that out, how
to work out your taxes, because
we're contract workers, we're
not self-employed, but where is
this money coming from? And I
have to say, it isn't an easy
thing. It's like I have times
when I have lots of money and
life is lovely, and I have times
where like, you know, there's
there's not a lot and it's
difficult. Because you get used
to having the extra money that
you have in the month when
you're working.
James Watson: Right. Yeah,
that's tough. Tim, what are your
thoughts on that?
Tim Wesseling: Yeah, I mean,
it's been an evolution. I'm here
in BC and I feel like I'm very
lucky currently. Before, just as
Lynne, if there was months where
I reported too much income, they
would penalize me. But that has
changed and the amount of
monthly income that I'm allowed
to make overtop of my disability
has gone up. And when it is
measured, when I do my income
tax, it's measured over a period
of a year, it's no longer, you
know, if I make $500 more a
month, or $300 less a month, the
next month, it doesn't matter.
This again, sort of speaks to
why I would love to be talking
to peers all across Canada,
because I mean, now I'm learning
what's going on with Ontario and
I see how how different and
maybe challenging that is. I
think there needs to be a little
bit more fight. And, you know, a
creation of a bit of a
standardization, hopefully, so
that we can have more equality
across, across the board, you
know? But the fact that I have a
contract is great. What Michael
mentioned was that he wants to
stay connected to working with
stigma and relating to people,
just like me, although I've
built up skills and my, the
organization I work for finds me
valuable and they offered me
another contract, my next job
may not be specifically as using
my identity, or my peerness. So
that part is a compromise for
me, as well, because I mean, I
would love to be working solely
in a community that I'm really
involved and connected with. But
right now, they're saying, Well,
I think we'll put you over here
until maybe this study happens.
So they're, they're very good at
working for me, but, you know, I
feel like we need to build this
up so that there is more work
available for peers in our
communities, you know, across
the board.
James Watson: For sure. You
know, I wonder if peer
researcher work in general could
be sustained in Canada, if it
was not for the government
disability support programs? I
mean, can you afford to do this
work without government
supports, Lynne?
Lynne: No, no, because I have, I
have long periods where I am
employed. But I also have long
periods where I'm still maybe
under contract, but I'm not
earning money at the time. And
so I would have to have like
another job.
James Watson: Right. What about
you, Tim?
Tim Wesseling: I have all levels
of stress right now hearing us
talking about this, because I've
been on disability for many
years., and the transition or
the feeling of transition to
where I am now to, you know,
going off this sort of place
where I feel I'm supported by
the province, I'm able to do
part time work. What would the
new place of being—working full
time and maybe uncertainty of
employment, be like in terms of
stress and my health? You know,
my main job right now as a
person living with HIV is to
take care of myself and live
healthy, so I'm not a burden to
the healthcare system. And
that's how I see it. That's
number one. You know, if I'm
scheduling my hours, I make sure
I'm going to the gym first and
then going to my job. So I mean,
it's—I have to have that sort of
live-work balance. It's, it's
complicated.
James Watson: Yeah, for sure. I
mean, it took me a long time, I
was on government support for a
long time. And I had a job, but
it was really emotionally
challenging to, to feel safe to
come off of government support,
because without it, it's a
challenge.
Lynne: It's, it's so funny that
you guys are saying that because
it's like, I identify, Tim, with
that, like, clutching feeling at
your chesyt if you think about,
like, not being able to have the
dependability of of government
assistance. It's like, jobs that
I've looked for, looked at
recently, it's like, I don't
even consider full-time. Because
the thought of going off
disability, just petrifies me.
It's like, oh, my God, what if
something happens? What if I get
sick? What if I can't go back
on? What if I can't get my meds?
What if like, and it's this big
whirl of like, Oh my god, like,
I can't, I can't do that.
Tim Wesseling: Yes, and, and and
to add to Lynne's point, you
know, my years of experience of
living with HIV and addiction
are my qualifications for a job
that is, you know, paying okay.
Like, if I were to go off of
disability, I would need to find
that work. And I don't know if
that work is reliable. I don't
have a lot of transferable
skills, because of my situation,
how my life has unfolded. I
could probably work two
full-time, part-time jobs to
find some place to, you know, be
off of disability, but I don't
know what my health would be
like at that point.
James Watson: Right. Let's talk
about, you know, those
transferable skills. So as a
peer researcher, are you
learning—I mean, okay, is there
a career? Do you consider peer
research a career or job? Let's
start there.
Tim Wesseling: I consider a
vocation. I consider it a
passion and I feel it is, I
don't know if I would put the
word career on it. It is, it is
who I am and it is how I am, you
know, able to give back and also
make money at the same time.
James Watson: Right. What about
you, Lynne? Do you think it's a
career or just a job for you?
Lynne: No, it's a career for me.
It's a, this is what I'd like to
do for the rest of my life. I'd
like to do it in different ways.
It's like, I always tell James,
I'm coming for your job. I want
your job.
James Watson: Right.
Lynne: But that is kind of my
dream. I would love to be a
project coordinator. I love
working with PRAs and the whole
training aspect and the support
of PRAs. And I'm very passionate
about, again, the quality of the
data and what research data
does. It's like, I could
definitely do this for the rest
of my life.
James Watson: And do you think
that you, like where do you,
where does that break have to
come from? Is it something that
you're doing or not doing? Or is
it something the research team
or the organizations need to do?
Why is that not happened yet?
Lynne: I struggle with how to
say this like in in a good way,
because I don't think that
there's fault anywhere. I think
that it's part of the process
that we're going through that
we're learning from. We've been
given this title of research
assistant or research associate,
that has an equal position
outside of the HIV movement—in
research everywhere. There are
research assistants, what
research assistants do in
academic research, or or outside
the HIV world, is not the same
as what we do in our world. So
our skills aren't as
transferable as—because if we go
in and say, I'm a research
assistant, I think the
expectation is that we have A,
B, C, and D, which isn't
necessarily what we have. So I
find that people who are looking
for research assistants, whether
or not it's a peer researcher,
or not a peer researcher,
they're just looking for skills
that we don't have. And the
skills that we have, there's no
credentials for, there's no
diploma that says, I can do
this, or I can do that, or
there's no recognition of our
skills to be able to take
outside the HIV world. And I
think that might come. I think
that is part of the process, but
the fact that we're using a term
that's used in other ways
outside, I think. creates a
barrier. Because they say, Well,
wait a minute, you're not a peer
researcher, or you're not a
research assistant, or you can't
do that, so...yeah.
James Watson: Well, maybe this,
you know, maybe this comes
through in association or like
the, you know, right Tim?
Tim Wesseling: Exactly.
Lynne: And here is how my mind
works. I'm a Libra. Not that I
believe in all this stuff, or
whatever, but I'm very, like,
seeing both sides of it—of the
situation. And people who are
research assistants in academic
research, have a degree, they go
to school, they have like
university degrees, okay.
They're like the people that we
work in, in Ontario who are data
analysts. It's like, you know,
the ones that we have the
privilege of working with in
Ontario, through Sean Rourke,
are working on their PhDs. And
then along comes us and says,
Well, our lived experience is
equal to your PhD. And there's
that balance of whether or not
it actually is or not.
James Watson: So you're finding
a disconnect there.
Lynne: There's definitely a
disconnect. And I don't know
how, I don't know how to like
work my brain around it.
James Watson: Because CBR, I
mean, we look at you know, lived
experiences expertise, as it is.
It's about where you funnel that
or, or what we can, what can we
do with that expertise?
Lynne: And I think that it is
part of an expertise. I think
it's part of a skill set. But
there has to be more to it kind
of than that.
James Watson: What do you think
about this, Tim?
Tim Wesseling: Well, you asked
earlier if being a PRA is a
career or a job, I think that a
research assistant is a job. I
think that a peer research
assistant, for me, is more of a
career because I'm a specialist.
I am bringing this. A research
assistant is not bringing that.
I am gaining some of those
skills as a research assistant,
and if I wanted to become a
research assistant and do that
full-time, I imagine I could
pursue you know, education and
get all your accreditation to do
that, to do to become a research
assistant, but it's not—that's
not why I'm here and that's
not...I spent all my years—I
spent like 30 years becoming a
peer, so I think I've done my
education. So I want to stick
where I'm at.
James Watson: Got it. So okay,
from your point of view then,
and I'll ask you this, Tim,
first, is the PRA model as it
exists working?
Tim Wesseling: I think it's
beginning to work. I really do.
I feel like where I am at here
in my position out here in BC, I
am probably example of a gold
standard of what it is to be a
PRA, but I know that that
doesn't exist equally across the
board in Canada. I think that
there is a struggle to bring
more awareness, to bring more
people get them involved to, to
demonstrate what our skills are
across all parts of
community-based research, so
that our position is more solid.
I think we need to be solidly
part of things, we don't have to
be just sort of like, you know,
part of a, you know, a research
grant application, as a token. I
think we need to be really
invested in—an invested part of
community-based research. And we
need to be connected with each
other. And we need to have some
standardization. So I don't
think we're there quite yet. But
I think we're at the beginning.
James Watson: Okay. So Lynne,
from your point of view, do you
think the PRA model is, as it
exists right now, is working?
Lynne: I agree with Tim. I think
it's beginning to. I think that
in some provinces it works
better than others. PRAs in
their roles are becoming more
recognized. Yeah, I think, I
think it's beginning to. I think
ideally, what would happen is
that—I really agree with Tim,
like on what he said about,
about all of it, but about the
thing about not putting us on
grant applications as tokens. I
think that PRAs should—almost
like a partnership—a PRA should
be attached to a, to a primary
investigator. And from the very
beginning, it's almost like a
mentorship program, it's like so
that the PRA goes through the
entire process, from the
beginning to the end, with the
primary investigato. Just as a
learning tool, but also, I think
primary investigators or
investigators have a
responsibility to the
community—to empower the
community. And they, their role
in empowering the community is
to support PRAs.
James Watson: Okay, thanks. So I
have one more question for you
guys. So what, Tim, what have
you learned about yourself doing
this work?
Tim Wesseling: Oh, I think I've
learned that I am stronger than
I ever thought I would be. I am
more—I'm prouder of myself.
Because for years, I undervalued
myself, and dealt with a lot of
stigma and shame. And I feel
like I can hold my head up, I
feel like I am part of creating,
you know, improvements in my
community. And I feel valued, I
feel valuable. So this has been
a big transition of my life. And
I couldn't be more grateful that
I've had the opportunity to be
around that. And I wish that
this was more widely available
to people to attain this type of
work and see their value.
James Watson: Thanks. Same
question to you, Lynne. What
have you learned about yourself
doing this work?
Lynne: I've learned that I've
had, I have a lot more in common
with the world than I thought
that I did. It's like that we're
all more the same than we are
different. And looking back, I
can see that I started doing
this with a lot of judgments and
a lot of stereotypes and a lot
of biases that have been broken
down simply by getting to know
people. And it's like, my life,
my life is different and I am
different, and everything has
changed because of the people
I've met and because of being
given the opportunity. And I
know that that that may sound
cliche to people when I say
that, but it it truly,
truly—this job is
transformational. It's like, it
changed how I looked at the
world, it changed how I looked
at people, it changed how I
looked at myself—how I judged
myself. Like, I almost found my
focus because I love research. I
love what it can do. I love the
potential of it. I love the
data. I love how it can empower
community. I love how it can
empower the people in the
community. I love the potential
of research. And I'm just
grateful to have been given the
opportunity to know that about
myself, because I never would
have known that without this.
James Watson: Well, thank you.
Thank you both. Now I have five
rapid fire questions that we
always close off pozcast with,
and I will start with you, Tim.
And it's just you know, just
this or that questions, right?
We'll start—the first one has to
do with the Olympics because the
Olympics are on. So, gymnastics
or track and field?
Tim Wesseling: Gymnastics.
James Watson: Truth or Dare?
Tim Wesseling: Dare.
James Watson: Intelligent or
funny?
Tim Wesseling: Both. Can you
tell a good intelligent joke?
James Watson: Passenger or
driver?
Tim Wesseling: Driver.
James Watson: Rich or
successful?
Tim Wesseling: Successful.
James Watson: Alright, now
Lynne, same questions to you.
Gymnastics or track and field?
Lynne: Track and field. This
will show you how Tim and I like
are two halves. So I'm track and
field.
James Watson: You're track and
field, okay. Truth or dare?
Lynne: Truth.
James Watson: Intelligence or
funny?
Lynne: Intelligence.
James Watson: Passenger or
driver?
Lynne: Passenger.
James Watson: Rich or
successful?
Lynne: Rich, baby. I want to be
rich.
Tim Wesseling: You are my other
half.
Lynne: I don't care about
successful, I just want the
cash.
James Watson: Well, thank you
both so much. It's been an
absolute pleasure. Appreciate
it.
Tim Wesseling: Thank you, James.
And thanks, Lynne, it was great
chatting with you.
Lynne: Oh, it was so great
talking to you both. You both
are amazing.
James Watson: That's it for us
this month. Thanks for tuning
in. We hope you'll join us next
time on pozcast. And if you have
any comments or questions or
ideas for new episodes, send me
an email at
pozcasts4u@gmail.com. That's the
number four and the letter U.
Pozcast is produced by The
Positive Effect, which is
brought to you by REACH Nexus at
the MAP Center for Urban Health
Solutions. The Positive Effect
is a facts-based lived
experience movement powered by
people living with HIV and can
be visited online at
positiveeffect.org. Technical
production is provided by David
Grein of the Acme podcasting
company in Toronto.