January 25, 2023 • 22 mins
Patient Family Partners, Amanda Quillin and Emily Liczbinski discuss their experiences as “context experts” working with Catherine Mather, a Senior Project Director at the Institute for Healthcare Improvement (IHI), on a patient safety bundle. IHI partners with the Alliance for Innovation on Maternal Health (AIM) to create Patient Safety Bundles. The bundles suggest actionable changes to improve maternal health outcomes.
--“It was a little emotional, honestly, it was a proud moment…it meant a lot.” (Amanda Q.)
--“I honestly got chills …To have it validated in writing was an amazing feeling.” (Emily L.)
--“Amanda and Emily’s input was invaluable…we had a much stronger product thanks to their thought, leadership, and guidance…” (Catherine M.)
About MoMMAs Voices
MoMMAs Voices (Maternal Mortality & Morbidity Advocates) is the first-ever maternal health patient advocates program bringing together real patient and family voices. We're made up of dozens of maternal health organizations who represent all types of maternal health conditions, as well as cross-cutting topics like maternal mental health, racial equity, healthcare delivery, and patient-provider partnership. We sit at the center of maternal health improvements, connecting and training patients with lived experiences, providers, quality improvement leaders, researchers, and policymakers to move forward improvements in maternal care. We are a program of the Preeclampsia Foundation.
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Transcript
Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Emily (00:00):
Hello, and welcome to our second episode of MoMMAs
Voices.
My name is Emily Taylor and I'min charge of engagement and
outreach.
One of the things I most enjoyabout working for MoMMAs Voices
is our matchmaking process forpairing certified patient family
partners with providers.
Every third podcast, we willtalk about different matchmaking
success stories.
(00:21):
We hope this can give our PFPsmore information about the types
of engagements out there andgive insight to providers and
organizations of how to includepatients with lived experience
into their work.
I am excited to introduce ourguest today.
Catherine Mather is a seniorproject director at the
Institute for HealthcareImprovement and works closely
(00:43):
with internal IHI teams,external IHI, faculty and
customers to design and ensureexcellent delivery of projects,
focus on redesigning systems,and establishing cross-sector
partnerships to create improvedand more equitable health and
healthcare outcomes.
Her current project portfolioincludes work and population
(01:06):
health, complex care, andmaternal and neonatal health.
Amanda Quillan is a certifiedhealth education specialist and
maternal health advocate basedin Virginia.
She survived a near missrelated to the birth of her
third child, a postpartumhemorrhage requiring multiple
blood transfusions, surgeries,and a month long stay in the I C
(01:30):
U.
Amanda now shares her story toraise awareness about the need
to improve maternal health andpatient safety.
She serves as a volunteer withPatient Rising and Virginia
Medical Reserve Corpse.
Emily Liczbinski is apreeclampsia and hemorrhage
survivor and a mom of two.
She is a childbirth educatorand international board
(01:52):
certified lactation consultant.
Emily has a passion forempowering women with the
knowledge and tools to makeinformed decisions with their
healthcare.
Thank you all for being heretoday.
Catherine, if you don't mind,can you please let us know more
about I H I and AIM and theirrole in maternal health?
Then can you tell us a littlebit more about the hemorrhage
(02:15):
change packet?
Catherine (02:18):
Sure.
Absolutely.
But first, thanks so much,Emily for the, the warm
introduction and thanks forhaving me here today.
So IHI is a globalnot-for-profit organization with
a mission to improve health andhealthcare worldwide.
We also have a long history ofworking in maternal and neonatal
health around the world,specifically here in the US from
2018 to 2021, IHI worked on amajor project funded by Merck
(02:42):
for Mothers that we calledBetter Maternal outcomes.
One of our aims in this workwas to support some of the
national efforts to implementreliable evidence-based care for
people who birth.
And it was through this workthat we first started connecting
with aim.
So AIM or the Alliance forInnovation on Maternal Health is
a national data-driven patientsafety and quality improvement
(03:04):
initiative.
And aim works through state andjurisdiction based teams to
align national, statejurisdiction and hospital level
QI efforts to reduce preventablematernal mortality and severe
maternal morbidity across theUnited States.
The aim patient safety bundlesare a core part of this work.
They are clinical conditionsspecific and follow an
(03:26):
evidence-based structure thatwhen performed collectively and
reliably have been proven toimprove patient outcomes.
To promote the successfulimplementation of these bundles,
AIM partnered with us here atIHI to create a series of
associated change packages.
For those who aren't familiarwith the term change package.
It, it is really just that it'sa package of changes or a
(03:46):
document that lists some of theevidence-based or best practices
specific to a topic.
It's usually organized around aframework or a model.
And in the case of theobstetric hemorrhage change
package, it's structured aroundthe aim hemorrhage patient
safety bundle.
Essentially, a change packageaims to take things from a
conceptual level to a verypractical and granular level.
(04:08):
For example, one of the keyconcepts from the obstetric
hemorrhage AIM bundle is theimportance of measuring and
communicating cumulative bloodloss to all team members using
quantitative approaches.
The change package takes thisconcept and then offers specific
change ideas to help accomplishthis.
For example, ensuring that allappropriate rooms have scales
(04:30):
available with teared weights ofpads and drapes, or using
standard calculation tools andhaving laminated listed dry
weights on hemorrhage carts.
So really getting into the kindof very specific actionable
changes that an organization canmake.
The hemorrhage change packagespecifically is designed to
support perinatal qualitycollaboratives, PQCs, or other
(04:53):
state and jurisdiction basedinitiatives to leverage the aim
obstetric hemorrhage patientsafety bundle more effectively.
Emily (05:00):
Awesome.
Thank you so much for thatexplanation.
I'm curious to how the idea forpatient input came across and
why that was an important thingfor you guys to do.
Catherine (05:11):
Yeah, no, that's a great question.
And you know, honestly, thiscame up really early in our work
together.
My team at IHI as well as ourcolleagues at AIM talked really
early in our partnership of theimportance of including people
with lived experience in thiswork.
One of the key tools that IHIuses to create change packages
are to host something that wecall an expert meeting.
(05:31):
For the hemorrhage changepackage, we look to convene a
small group of experts in thearea of reducing harm from
hemorrhage for birthing people..
I think it's important to notethat we really think of
expertise very broadly.
And we were very intentionalabout the mix of experts that we
wanted to have in the room orthe virtual room.
In the case of this expertmeeting of course we wanted
content experts, so nurses,doctors, midwives, program
(05:52):
leaders.
We also wanted folks withquality improvement expertise.
But a third and kind of reallycritical component of expertise
that we wanted to have wassomething that we call context
experts or people with livedexperience of hemorrhage.
It was really important that wehad all of these perspectives
in the room together, you know,doing this work one of the
challenges that healthcareproviders that are trying to
(06:14):
improve the systems that theywork in is that they often know,
about why things aren't workingwell and that can sometimes
lead to trying to justify themor make sense of them engaging
with people like Emily andAmanda make it much harder for
us to kind of stay in thatspace.
In this case, our contextexperts helped to ensure that we
were centering, birthing peoplein our work and that we weren't
(06:36):
inadvertently suggestingchanges that might have
unintended consequences forfuture patients.
I'd also note that theirperspectives also pushed us to
think a lot more creativelyabout our suggested change ideas
as well.
Emily (06:50):
Great.
Thank you so much.
Amanda and Emily, I wanna heara little bit from you both.
I know your introductions are avery small summary of your
story and what you went through.
But Amanda, I would like tohear from you first about what
made you get involved withadvocacy work and how did you
come across the Mama's Voicestraining?
Amanda (07:11):
Awesome.
Thanks so much for having me ontoday, Emily.
Really excited to be doingthis.
So I think like a lot of peoplewho experience something major
in their life, that it motivatesyou toward change, it motivates
you to wanna make a change.
And that's really where I wasand I was looking for any
opportunities that I could findto kind of get involved and make
a difference.
And really just searching forthose opportunities is how I
(07:34):
came across MoMMAs Voicesonline.
As I looked at the website andI saw all of the partner
organizations that MoMMAsvoices, Was involved with, I
really just felt that it wouldbe a really good group to get
involved with that could reallyopen up a lot of doors for
opportunity for me.
Emily (07:52):
What was the training like for you?
And was it helpful towards thisexperience with IHI?
I'm not sure if this was one ofyour first engagements or not.
Could you expand on what thetraining was like for you and
taking part in a project likethis?
Amanda (08:08):
So for me the training was very meaningful, very
impactful.
This was my first majormaternal health related advocacy
opportunity.
And I can tell you, working inacademia, I've done a lot of
online training.
And a lot of times it'ssomething you click through, you
don't necessarily engage with,you don't necessarily interact
with a whole lot.
And I really liked that thistraining didn't feel that way.
(08:31):
It allowed me to really reflectand draw on my own experience
as well as connect with otherpeople through the Facebook
group that a accompanies thetraining.
And the one thing that I reallyliked is the training does a
great job of helping you assesswhether you're in a, in a good
mindset to be prepared to takeon this type of advocacy work.
It can be heavy, especially forsurvivors.
(08:52):
And I really appreciated thatthe training was in a gentle
way, helped you assess if youwere in a good mental space to
be ready to kind of pursue thistype of work.
And that helped me with thiswork with the IHI because it
kind of helped me really be ableto look at myself and say, am I
prepared to be able to enterinto advocacy work at this
(09:15):
level.
Emily (09:17):
Thank you so much.
I remember when I got the finalpacket in an email and got to
see your names and theacknowledgements.
I would just like to hear alittle bit about how that felt
because a lot of theseengagement, we really hope will
lead to change, you're notalways gonna see the effects.
It might start the ball rollingfor a bigger thing.
(09:38):
But what was that feeling likebeing able to see your name on,
on such a big, importantdocument?
Amanda (09:45):
Yeah, it was a little emotional honestly.
It was a very proud moment.
My near miss happened 10 yearsago, so it was kind of a full
circle moment for me.
Yes, it's been, you know, thatlong, but now I'm finally
involved in change.
I actually screenshotted myname and sent it to a few people
who knew that I had beeninvolved in this.
And yeah, it was, it wasreally, it meant a lot.
(10:07):
When you decide you want tomake change and you wanna take
part in something like this,sometimes you feel like I'm just
one person.
How much can I really do, youknow, how much can I really
accomplish?
So seeing that like in atangible way that I had
participated in something evenas a, you know, a small part it
really, it, it really meant alot.
Emily (10:26):
That's very special.
Okay.
I am gonna move to you, Emily.
Thank you so much for beingpatient.
I would also love to hear fromyou what made you start getting
involved in advocacy how you gotinvolved with MoMMAs Voices and
what that's journey has beenlike for you.
Emily L (10:41):
Thanks Emily for having me.
I'm excited to be here today.
For me, it was after the birthof my first child.
I had preeclampsia that turnedinto HELLP syndrome and I was
also a childbirth educator atthat time, and I was thinking
what were some of the thingsthat might have been missed in
(11:01):
my care?
I felt like I got reasonablecare, but it did kind of turn
into an emergency very quicklytowards the end of my pregnancy.
And how could this beprevented?
A lot of things that I would gothrough was prevention.
So looking through online, Igot involved with the
preeclampsia foundation and didsome research and surveys with
(11:22):
them.
And then one day got an emailfrom MoMMAs Voices and I was
like, I don't know what this is.
Let me check them out.
I've never heard of them.
And I think I was probably oneof the first few people you guys
had just launched and I decidedto take the training, not
really having any idea what Iwas actually getting into, but
just honestly, I'm usuallygenerally interested in learning
(11:44):
more and seeing where thiscould lead as far as myself
healing and helping other momshave better outcomes.
Emily (11:54):
What was your experience like on this project?
Because like you said, youweren't sure a lot about, you
know, what all this involved.
Was it kind of a nerve-wrackingexperience?
Did you feel okay during it?
I know a lot of our PFPshaven't been paired yet, or the
new ones can have a little bitof anxiety which is totally
valid around their firstengagement.
Emily L (12:16):
I think there was a little bit of anxiety just
because with anything newthere's always excitement and
anxiety.
But I felt very supported.
I felt through the training.
there was a lot of emphasis onself-care and self-healing
first.
Taking care of yourself first.
Checking your feelings first,and then every step of the way,
(12:36):
any time anything's been offeredor there's an opportunity that
comes up.
I always felt like the staffwith MoMMAs Voices has always
been there to guide us through.
So I don't feel like eventhough there was some anxiety I
don't feel like I was evergetting into too much that I
couldn't handle just with thesupport that I had around from
(12:56):
the staff.
Emily (12:58):
Awesome.
I just want people to also knowthat if speaking in front of
300 people is not your jam.
we have other opportunities toa little more intimate.
I'm glad to hear that you feltsupported through the process.
Emily L (13:11):
You guys always, you know, say it's okay to say no if
you don't feel this is rightfor you, or that's out of your
comfort zone or it's too much onyour plate right now.
And I feel like we sometimesget away from that as a culture
just in general.
It's always nice to know youalways have the choice to say
no.
If for whatever reason, thatjust doesn't seem like the right
(13:32):
fit for you.
Emily (13:33):
Same question for you that Amanda had.
What was it like seeing yourname in the acknowledgements?
Emily L (13:39):
I honestly got chills when you sent out the email and
I got to read through and seeit.
I mean, the whole experiencewas amazing.
Just being in the virtual roomand everybody from all different
disciplines, those of us thathad lived through it, those of
those that were providers thathad been through it or had
different expertise.
I always felt like I was heardevery step of the way through
(14:01):
this experience, but to actuallyhave it validated in writing
was an amazing feeling.
It's hard to express just kindof that moment of chills like,
wow, like this is permanent.
Sometimes you feel like you dosomething and you're like, okay,
that was great.
That felt great.
But to actually see it inwriting makes it feel a little
more permanent.
Emily (14:20):
Awesome.
Catherine, I'd like to go backto you.
I know you had mentioned alittle bit already about how
Emily and Amanda's input reallyhelped you guys, but can you
speak a little bit more to that?
What was your experience goingthrough this process with Emily
and Amanda during this creationof the packet?
Catherine (14:38):
Yeah.
I mean, you know, in shortAmanda and Emily's input was
invaluable and there's like nota shadow of a doubt that we had
a much stronger final product.
thanks to their thoughtleadership and, and guidance
along the way.
I mean, I think both Emily andAmanda just spoke about this,
but they were able to reallyactively participate in the
expert meeting offering insightsfrom their own personal
(15:01):
experiences.
And I think also helping toguide the, the larger group
toward a vision of an improvedsystem of care.
Both Emily and Amanda offeredreflections on where their needs
weren't met and where harmoccurred.
And then I think we're able totake that and offer suggestions
for specific actionable changesnearly all of which were
(15:21):
included in the final changepackage.
As Emily just said, they eachalso reviewed some of the early
drafts of the change package andprovided some critical feedback
from their patient perspectivethere as well.
Emily and Amanda, you bothhelped us hone in on some of the
specific moments in the careprocess for obstetric hemorrhage
where harm is likely to occur,and then provided guidance on
(15:43):
changes to prevent similar harmin the future.
To me it was just so powerfulto see Emily and Amanda harness
their personal and, and frankly,really painful experiences i n
an effort to improve the careexperiences and outcomes for
other patients in the future.
I think the types of storiesand experiences like those that
Emily and Amanda shared duringthe expert meeting really help
(16:06):
to shine that bright light onthe systems that we really need
to kind of have a clear steroidin order to improve them.
So, you know, just invaluableinput and, and very grateful
Amanda and Emily for your rolein this work.
Emily (16:21):
Thank you Catherine, and hats off to you guys for
including patients and,recognizing the value.
Emily and Amanda, I just wannahear a little bit more about how
this engagement affected you.
Did it charge you up for otherengagements that might come your
way?
Amanda, I just wanna know youroverall feeling of participating
(16:42):
in this.
Amanda (16:42):
It was a great experience for me.
It really did motivate me towanna do more.
I really appreciated that theentire team was so receptive to
what we had to say as peoplewith lived experiences.
Going into it that was kind ofwhere my anxiety came in was how
much are they really gonnalisten to us as people who
(17:03):
aren't necessarily experts inthe field in the way that other
people are experts?
And I didn't wanna overstepthat role as someone with a
lived experience, as a contextexpert.
And I really appreciated that.
They really listened to what wehad to say.
They made edits based on whatwe had to say.
They really stopped and youcould tell that they were
(17:23):
thinking about the points thatwe made and the questions that
we raised.
And I really walked away fromit feeling like, wow, like that
had an impact.
I worked in healthcare for along time.
I was a X-ray tech and becauseof that, I was able to drive my
care more than a lot of people,I was able to ask a lot of
questions in a lot of ways Isaved my own life because I knew
(17:43):
the questions to ask and thethings to look out for, and I
just kept thinking, what aboutthe people who don't have any
healthcare knowledge, that don'thave any background in
healthcare, they don't know thethings to look out for.
They don't know the questionsto ask, and so I really wanted
opportunities to really advocatefor those patients who walk in
(18:03):
with no background inhealthcare.
And so being part of this groupwith experts in the field and
being able to hear their inputand hear the way they look at
the situation from a providerstandpoint, but then them take
the time to listen to how welook at the situation from a
patient standpoint it really wasjust a great collection of
minds and perspectives.
(18:25):
And I really think that's whatmade it be so successful.
Emily (18:29):
Thank you, Amanda.
What about you, Emily?
What were your overall feelingsafterwards?
Did you feel charged up to domore?
Did it make you kind of takeback and identify some of your,
you know, self-care needs?
What was your experience like?
Emily L (18:43):
It definitely wanted me to do more just because it was
such a positive experience.
Just exactly what Amanda said,you felt so validated, you felt
like you were heard, you feltlike your opinions mattered.
I feel like if it wouldn't havebeen like that, I might have
stepped back and questioned, youknow, is this right for me?
And it might have beensomething where doing the
(19:04):
debriefs like you have afterthose experiences would help
anybody that might have anegative experience identify
that this may be a possibility,but you know, it just depends on
the situation.
Sometimes things don't alwaysgo as we planned or people don't
always listen to us as we'dwished or hoped.
I felt like there was enoughcontrol in there where I feel
comfortable.
If something doesn't go or thenext time I step into a role, if
(19:27):
it doesn't go as planned, I canspeak up and say, Hey, this was
my experience.
And MoMMAs voices would takethat into consideration and
maybe debrief and go throughthat.
Anytime you are speaking,whether or not it's a positive
or negative experience, positiveis always of course makes you
feel better.
It does bring up a lot of thoseemotions and things that you
(19:48):
may not think about on a dailybasis or that you may have dealt
with a little bit already.
So there was a little bit ofreflection just going back to
some of those memories of thingsthat I hadn't thought about.
Or hearing somebody else'sstory and just empathizing for
them, because you are in a roomwith other people that have had
lived experiences that aresimilar but also different and
they may have lost more, or youmay have lost more.
(20:12):
You know, everybody's comingfrom different sides of the
fence.
But you know, just taking aminute to think about that after
the meeting and taking a momentto reflect was really helpful
for me.
I think that's also part of thetraining that we went through
before we went into a role toadvocate is just making sure
that we are able to have thatself-care moment and that we
(20:34):
have dealt with those feelingsso that when we do go into
advocacy work, we don't feellike it's something that we
can't handle.
Emily (20:44):
Love that response.
I really appreciate that,Emily.
This can be a triggering andtraumatizing experience to kind
of have to dig back into thoseexperiences.
And, you know, MoMMAs voicesalways wants to be here as any
sort of support that you need.
The most important thing is toalways check in with yourself on
your feelings after doingsomething like this.
(21:05):
Well thank you Catherine,Amanda and Emily.
I really appreciate your timehere today.
I think this is gonna be reallyvaluable for our listeners.
Thank you everybody listeningtoday and our next podcast will
be here in two weeks.
And thank you for listening.
Hello, and welcome to our second episode of MoMMAs
Voices.
My name is Emily Taylor and I'min charge of engagement and
outreach.
One of the things I most enjoyabout working for MoMMAs Voices
is our matchmaking process forpairing certified patient family
partners with providers.
Every third podcast, we willtalk about different matchmaking
success stories.
(00:21):
We hope this can give our PFPsmore information about the types
of engagements out there andgive insight to providers and
organizations of how to includepatients with lived experience
into their work.
I am excited to introduce ourguest today.
Catherine Mather is a seniorproject director at the
Institute for HealthcareImprovement and works closely
(00:43):
with internal IHI teams,external IHI, faculty and
customers to design and ensureexcellent delivery of projects,
focus on redesigning systems,and establishing cross-sector
partnerships to create improvedand more equitable health and
healthcare outcomes.
Her current project portfolioincludes work and population
(01:06):
health, complex care, andmaternal and neonatal health.
Amanda Quillan is a certifiedhealth education specialist and
maternal health advocate basedin Virginia.
She survived a near missrelated to the birth of her
third child, a postpartumhemorrhage requiring multiple
blood transfusions, surgeries,and a month long stay in the I C
(01:30):
U.
Amanda now shares her story toraise awareness about the need
to improve maternal health andpatient safety.
She serves as a volunteer withPatient Rising and Virginia
Medical Reserve Corpse.
Emily Liczbinski is apreeclampsia and hemorrhage
survivor and a mom of two.
She is a childbirth educatorand international board
(01:52):
certified lactation consultant.
Emily has a passion forempowering women with the
knowledge and tools to makeinformed decisions with their
healthcare.
Thank you all for being heretoday.
Catherine, if you don't mind,can you please let us know more
about I H I and AIM and theirrole in maternal health?
Then can you tell us a littlebit more about the hemorrhage
(02:15):
change packet?
Catherine (02:18):
Sure.
Absolutely.
But first, thanks so much,Emily for the, the warm
introduction and thanks forhaving me here today.
So IHI is a globalnot-for-profit organization with
a mission to improve health andhealthcare worldwide.
We also have a long history ofworking in maternal and neonatal
health around the world,specifically here in the US from
2018 to 2021, IHI worked on amajor project funded by Merck
(02:42):
for Mothers that we calledBetter Maternal outcomes.
One of our aims in this workwas to support some of the
national efforts to implementreliable evidence-based care for
people who birth.
And it was through this workthat we first started connecting
with aim.
So AIM or the Alliance forInnovation on Maternal Health is
a national data-driven patientsafety and quality improvement
(03:04):
initiative.
And aim works through state andjurisdiction based teams to
align national, statejurisdiction and hospital level
QI efforts to reduce preventablematernal mortality and severe
maternal morbidity across theUnited States.
The aim patient safety bundlesare a core part of this work.
They are clinical conditionsspecific and follow an
(03:26):
evidence-based structure thatwhen performed collectively and
reliably have been proven toimprove patient outcomes.
To promote the successfulimplementation of these bundles,
AIM partnered with us here atIHI to create a series of
associated change packages.
For those who aren't familiarwith the term change package.
It, it is really just that it'sa package of changes or a
(03:46):
document that lists some of theevidence-based or best practices
specific to a topic.
It's usually organized around aframework or a model.
And in the case of theobstetric hemorrhage change
package, it's structured aroundthe aim hemorrhage patient
safety bundle.
Essentially, a change packageaims to take things from a
conceptual level to a verypractical and granular level.
(04:08):
For example, one of the keyconcepts from the obstetric
hemorrhage AIM bundle is theimportance of measuring and
communicating cumulative bloodloss to all team members using
quantitative approaches.
The change package takes thisconcept and then offers specific
change ideas to help accomplishthis.
For example, ensuring that allappropriate rooms have scales
(04:30):
available with teared weights ofpads and drapes, or using
standard calculation tools andhaving laminated listed dry
weights on hemorrhage carts.
So really getting into the kindof very specific actionable
changes that an organization canmake.
The hemorrhage change packagespecifically is designed to
support perinatal qualitycollaboratives, PQCs, or other
(04:53):
state and jurisdiction basedinitiatives to leverage the aim
obstetric hemorrhage patientsafety bundle more effectively.
Emily (05:00):
Awesome.
Thank you so much for thatexplanation.
I'm curious to how the idea forpatient input came across and
why that was an important thingfor you guys to do.
Catherine (05:11):
Yeah, no, that's a great question.
And you know, honestly, thiscame up really early in our work
together.
My team at IHI as well as ourcolleagues at AIM talked really
early in our partnership of theimportance of including people
with lived experience in thiswork.
One of the key tools that IHIuses to create change packages
are to host something that wecall an expert meeting.
(05:31):
For the hemorrhage changepackage, we look to convene a
small group of experts in thearea of reducing harm from
hemorrhage for birthing people..
I think it's important to notethat we really think of
expertise very broadly.
And we were very intentionalabout the mix of experts that we
wanted to have in the room orthe virtual room.
In the case of this expertmeeting of course we wanted
content experts, so nurses,doctors, midwives, program
(05:52):
leaders.
We also wanted folks withquality improvement expertise.
But a third and kind of reallycritical component of expertise
that we wanted to have wassomething that we call context
experts or people with livedexperience of hemorrhage.
It was really important that wehad all of these perspectives
in the room together, you know,doing this work one of the
challenges that healthcareproviders that are trying to
(06:14):
improve the systems that theywork in is that they often know,
about why things aren't workingwell and that can sometimes
lead to trying to justify themor make sense of them engaging
with people like Emily andAmanda make it much harder for
us to kind of stay in thatspace.
In this case, our contextexperts helped to ensure that we
were centering, birthing peoplein our work and that we weren't
(06:36):
inadvertently suggestingchanges that might have
unintended consequences forfuture patients.
I'd also note that theirperspectives also pushed us to
think a lot more creativelyabout our suggested change ideas
as well.
Emily (06:50):
Great.
Thank you so much.
Amanda and Emily, I wanna heara little bit from you both.
I know your introductions are avery small summary of your
story and what you went through.
But Amanda, I would like tohear from you first about what
made you get involved withadvocacy work and how did you
come across the Mama's Voicestraining?
Amanda (07:11):
Awesome.
Thanks so much for having me ontoday, Emily.
Really excited to be doingthis.
So I think like a lot of peoplewho experience something major
in their life, that it motivatesyou toward change, it motivates
you to wanna make a change.
And that's really where I wasand I was looking for any
opportunities that I could findto kind of get involved and make
a difference.
And really just searching forthose opportunities is how I
(07:34):
came across MoMMAs Voicesonline.
As I looked at the website andI saw all of the partner
organizations that MoMMAsvoices, Was involved with, I
really just felt that it wouldbe a really good group to get
involved with that could reallyopen up a lot of doors for
opportunity for me.
Emily (07:52):
What was the training like for you?
And was it helpful towards thisexperience with IHI?
I'm not sure if this was one ofyour first engagements or not.
Could you expand on what thetraining was like for you and
taking part in a project likethis?
Amanda (08:08):
So for me the training was very meaningful, very
impactful.
This was my first majormaternal health related advocacy
opportunity.
And I can tell you, working inacademia, I've done a lot of
online training.
And a lot of times it'ssomething you click through, you
don't necessarily engage with,you don't necessarily interact
with a whole lot.
And I really liked that thistraining didn't feel that way.
(08:31):
It allowed me to really reflectand draw on my own experience
as well as connect with otherpeople through the Facebook
group that a accompanies thetraining.
And the one thing that I reallyliked is the training does a
great job of helping you assesswhether you're in a, in a good
mindset to be prepared to takeon this type of advocacy work.
It can be heavy, especially forsurvivors.
(08:52):
And I really appreciated thatthe training was in a gentle
way, helped you assess if youwere in a good mental space to
be ready to kind of pursue thistype of work.
And that helped me with thiswork with the IHI because it
kind of helped me really be ableto look at myself and say, am I
prepared to be able to enterinto advocacy work at this
(09:15):
level.
Emily (09:17):
Thank you so much.
I remember when I got the finalpacket in an email and got to
see your names and theacknowledgements.
I would just like to hear alittle bit about how that felt
because a lot of theseengagement, we really hope will
lead to change, you're notalways gonna see the effects.
It might start the ball rollingfor a bigger thing.
(09:38):
But what was that feeling likebeing able to see your name on,
on such a big, importantdocument?
Amanda (09:45):
Yeah, it was a little emotional honestly.
It was a very proud moment.
My near miss happened 10 yearsago, so it was kind of a full
circle moment for me.
Yes, it's been, you know, thatlong, but now I'm finally
involved in change.
I actually screenshotted myname and sent it to a few people
who knew that I had beeninvolved in this.
And yeah, it was, it wasreally, it meant a lot.
(10:07):
When you decide you want tomake change and you wanna take
part in something like this,sometimes you feel like I'm just
one person.
How much can I really do, youknow, how much can I really
accomplish?
So seeing that like in atangible way that I had
participated in something evenas a, you know, a small part it
really, it, it really meant alot.
Emily (10:26):
That's very special.
Okay.
I am gonna move to you, Emily.
Thank you so much for beingpatient.
I would also love to hear fromyou what made you start getting
involved in advocacy how you gotinvolved with MoMMAs Voices and
what that's journey has beenlike for you.
Emily L (10:41):
Thanks Emily for having me.
I'm excited to be here today.
For me, it was after the birthof my first child.
I had preeclampsia that turnedinto HELLP syndrome and I was
also a childbirth educator atthat time, and I was thinking
what were some of the thingsthat might have been missed in
(11:01):
my care?
I felt like I got reasonablecare, but it did kind of turn
into an emergency very quicklytowards the end of my pregnancy.
And how could this beprevented?
A lot of things that I would gothrough was prevention.
So looking through online, Igot involved with the
preeclampsia foundation and didsome research and surveys with
(11:22):
them.
And then one day got an emailfrom MoMMAs Voices and I was
like, I don't know what this is.
Let me check them out.
I've never heard of them.
And I think I was probably oneof the first few people you guys
had just launched and I decidedto take the training, not
really having any idea what Iwas actually getting into, but
just honestly, I'm usuallygenerally interested in learning
(11:44):
more and seeing where thiscould lead as far as myself
healing and helping other momshave better outcomes.
Emily (11:54):
What was your experience like on this project?
Because like you said, youweren't sure a lot about, you
know, what all this involved.
Was it kind of a nerve-wrackingexperience?
Did you feel okay during it?
I know a lot of our PFPshaven't been paired yet, or the
new ones can have a little bitof anxiety which is totally
valid around their firstengagement.
Emily L (12:16):
I think there was a little bit of anxiety just
because with anything newthere's always excitement and
anxiety.
But I felt very supported.
I felt through the training.
there was a lot of emphasis onself-care and self-healing
first.
Taking care of yourself first.
Checking your feelings first,and then every step of the way,
(12:36):
any time anything's been offeredor there's an opportunity that
comes up.
I always felt like the staffwith MoMMAs Voices has always
been there to guide us through.
So I don't feel like eventhough there was some anxiety I
don't feel like I was evergetting into too much that I
couldn't handle just with thesupport that I had around from
(12:56):
the staff.
Emily (12:58):
Awesome.
I just want people to also knowthat if speaking in front of
300 people is not your jam.
we have other opportunities toa little more intimate.
I'm glad to hear that you feltsupported through the process.
Emily L (13:11):
You guys always, you know, say it's okay to say no if
you don't feel this is rightfor you, or that's out of your
comfort zone or it's too much onyour plate right now.
And I feel like we sometimesget away from that as a culture
just in general.
It's always nice to know youalways have the choice to say
no.
If for whatever reason, thatjust doesn't seem like the right
(13:32):
fit for you.
Emily (13:33):
Same question for you that Amanda had.
What was it like seeing yourname in the acknowledgements?
Emily L (13:39):
I honestly got chills when you sent out the email and
I got to read through and seeit.
I mean, the whole experiencewas amazing.
Just being in the virtual roomand everybody from all different
disciplines, those of us thathad lived through it, those of
those that were providers thathad been through it or had
different expertise.
I always felt like I was heardevery step of the way through
(14:01):
this experience, but to actuallyhave it validated in writing
was an amazing feeling.
It's hard to express just kindof that moment of chills like,
wow, like this is permanent.
Sometimes you feel like you dosomething and you're like, okay,
that was great.
That felt great.
But to actually see it inwriting makes it feel a little
more permanent.
Emily (14:20):
Awesome.
Catherine, I'd like to go backto you.
I know you had mentioned alittle bit already about how
Emily and Amanda's input reallyhelped you guys, but can you
speak a little bit more to that?
What was your experience goingthrough this process with Emily
and Amanda during this creationof the packet?
Catherine (14:38):
Yeah.
I mean, you know, in shortAmanda and Emily's input was
invaluable and there's like nota shadow of a doubt that we had
a much stronger final product.
thanks to their thoughtleadership and, and guidance
along the way.
I mean, I think both Emily andAmanda just spoke about this,
but they were able to reallyactively participate in the
expert meeting offering insightsfrom their own personal
(15:01):
experiences.
And I think also helping toguide the, the larger group
toward a vision of an improvedsystem of care.
Both Emily and Amanda offeredreflections on where their needs
weren't met and where harmoccurred.
And then I think we're able totake that and offer suggestions
for specific actionable changesnearly all of which were
(15:21):
included in the final changepackage.
As Emily just said, they eachalso reviewed some of the early
drafts of the change package andprovided some critical feedback
from their patient perspectivethere as well.
Emily and Amanda, you bothhelped us hone in on some of the
specific moments in the careprocess for obstetric hemorrhage
where harm is likely to occur,and then provided guidance on
(15:43):
changes to prevent similar harmin the future.
To me it was just so powerfulto see Emily and Amanda harness
their personal and, and frankly,really painful experiences i n
an effort to improve the careexperiences and outcomes for
other patients in the future.
I think the types of storiesand experiences like those that
Emily and Amanda shared duringthe expert meeting really help
(16:06):
to shine that bright light onthe systems that we really need
to kind of have a clear steroidin order to improve them.
So, you know, just invaluableinput and, and very grateful
Amanda and Emily for your rolein this work.
Emily (16:21):
Thank you Catherine, and hats off to you guys for
including patients and,recognizing the value.
Emily and Amanda, I just wannahear a little bit more about how
this engagement affected you.
Did it charge you up for otherengagements that might come your
way?
Amanda, I just wanna know youroverall feeling of participating
(16:42):
in this.
Amanda (16:42):
It was a great experience for me.
It really did motivate me towanna do more.
I really appreciated that theentire team was so receptive to
what we had to say as peoplewith lived experiences.
Going into it that was kind ofwhere my anxiety came in was how
much are they really gonnalisten to us as people who
(17:03):
aren't necessarily experts inthe field in the way that other
people are experts?
And I didn't wanna overstepthat role as someone with a
lived experience, as a contextexpert.
And I really appreciated that.
They really listened to what wehad to say.
They made edits based on whatwe had to say.
They really stopped and youcould tell that they were
(17:23):
thinking about the points thatwe made and the questions that
we raised.
And I really walked away fromit feeling like, wow, like that
had an impact.
I worked in healthcare for along time.
I was a X-ray tech and becauseof that, I was able to drive my
care more than a lot of people,I was able to ask a lot of
questions in a lot of ways Isaved my own life because I knew
(17:43):
the questions to ask and thethings to look out for, and I
just kept thinking, what aboutthe people who don't have any
healthcare knowledge, that don'thave any background in
healthcare, they don't know thethings to look out for.
They don't know the questionsto ask, and so I really wanted
opportunities to really advocatefor those patients who walk in
(18:03):
with no background inhealthcare.
And so being part of this groupwith experts in the field and
being able to hear their inputand hear the way they look at
the situation from a providerstandpoint, but then them take
the time to listen to how welook at the situation from a
patient standpoint it really wasjust a great collection of
minds and perspectives.
(18:25):
And I really think that's whatmade it be so successful.
Emily (18:29):
Thank you, Amanda.
What about you, Emily?
What were your overall feelingsafterwards?
Did you feel charged up to domore?
Did it make you kind of takeback and identify some of your,
you know, self-care needs?
What was your experience like?
Emily L (18:43):
It definitely wanted me to do more just because it was
such a positive experience.
Just exactly what Amanda said,you felt so validated, you felt
like you were heard, you feltlike your opinions mattered.
I feel like if it wouldn't havebeen like that, I might have
stepped back and questioned, youknow, is this right for me?
And it might have beensomething where doing the
(19:04):
debriefs like you have afterthose experiences would help
anybody that might have anegative experience identify
that this may be a possibility,but you know, it just depends on
the situation.
Sometimes things don't alwaysgo as we planned or people don't
always listen to us as we'dwished or hoped.
I felt like there was enoughcontrol in there where I feel
comfortable.
If something doesn't go or thenext time I step into a role, if
(19:27):
it doesn't go as planned, I canspeak up and say, Hey, this was
my experience.
And MoMMAs voices would takethat into consideration and
maybe debrief and go throughthat.
Anytime you are speaking,whether or not it's a positive
or negative experience, positiveis always of course makes you
feel better.
It does bring up a lot of thoseemotions and things that you
(19:48):
may not think about on a dailybasis or that you may have dealt
with a little bit already.
So there was a little bit ofreflection just going back to
some of those memories of thingsthat I hadn't thought about.
Or hearing somebody else'sstory and just empathizing for
them, because you are in a roomwith other people that have had
lived experiences that aresimilar but also different and
they may have lost more, or youmay have lost more.
(20:12):
You know, everybody's comingfrom different sides of the
fence.
But you know, just taking aminute to think about that after
the meeting and taking a momentto reflect was really helpful
for me.
I think that's also part of thetraining that we went through
before we went into a role toadvocate is just making sure
that we are able to have thatself-care moment and that we
(20:34):
have dealt with those feelingsso that when we do go into
advocacy work, we don't feellike it's something that we
can't handle.
Emily (20:44):
Love that response.
I really appreciate that,Emily.
This can be a triggering andtraumatizing experience to kind
of have to dig back into thoseexperiences.
And, you know, MoMMAs voicesalways wants to be here as any
sort of support that you need.
The most important thing is toalways check in with yourself on
your feelings after doingsomething like this.
(21:05):
Well thank you Catherine,Amanda and Emily.
I really appreciate your timehere today.
I think this is gonna be reallyvaluable for our listeners.
Thank you everybody listeningtoday and our next podcast will
be here in two weeks.
And thank you for listening.
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