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 MoMMA's Voices
MoMMA’s (Maternal Mortality and Morbidity Advocates) Voices is the first-ever maternal health patient advocacy coalition established in 2018, to amplify the voices of people who have experienced childbirth complications or loss - especially those who have been historically marginalized - ensuring they are equipped and activated as partners with providers and researchers to improve maternal health outcomes.
This is a program of the Preeclampsia Foundation, a 501(c)(3) non-profit organization, and is supported by a grant through Merck for Mothers. For more information, visit mommasvoices.org and preeclampsia.org.
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
Emily (00:00):
Hello, and welcome to our second episode of MoMMA's
Voices.
My name is Emily Taylor and I'min charge of engagement and
outreach.
One of the things I most enjoyabout working for MoMMA's 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 miss relatedto the birth of her third child,
a postpartum hemorrhagerequiring multiple blood
transfusions, surgeries, and amonth long stay in the I C U.
(01:30):
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 educator andinternational board certified
(01:53):
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, Emilyfor the, the warm introduction
and thanks for having me heretoday.
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 work wasto support some of the national
efforts to implement reliableevidence-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 the obstetrichemorrhage change package, it's
structured around the aimhemorrhage 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 them ormake sense of them engaging with
people like Emily and Amandamake it much harder for us to
kind of stay in that space.
In this case, our contextexperts helped to ensure that we
were centering, birthing peoplein our work and that we weren't
(06:36):
inadvertently suggesting changesthat might have unintended
consequences for futurepatients.
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 hear alittle 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 to hearfrom you first about what made
you get involved with advocacywork and how did you come across
the Mama's Voices training?
Amanda (07:11):
Awesome.
Thanks so much for having me ontoday, Emily.
Really excited to be doing this.
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 MoMMA's Voicesonline.
As I looked at the website and Isaw all of the partner
organizations that MoMMA'svoices, 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 major maternalhealth 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.
(08:28):
And I really liked that thistraining didn't feel that way.
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.
(08:50):
It can be heavy, especially forsurvivors.
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
(09:10):
prepared to be able to enterinto advocacy work at this
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 my nameand sent it to a few people who
knew that I had been involved inthis.
And yeah, it was, it was really,it meant a lot.
(10:07):
When you decide you want to makechange 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 MoMMA's 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 be prevented?
A lot of things that I would gothrough was prevention.
So looking through online, I gotinvolved with the preeclampsia
foundation and did some researchand surveys with them.
(11:22):
And then one day got an emailfrom MoMMA's 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 I wasactually getting into, but just
honestly, I'm usually generallyinterested in learning more and
(11:45):
seeing where this could lead asfar as myself healing and
helping other moms have betteroutcomes.
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 PFPs haven'tbeen paired yet, or the new ones
can have a little bit of anxietywhich is totally valid around
(12:15):
their first engagement.
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 MoMMA's Voices has always
been there to guide us through.
So I don't feel like even thoughthere was some anxiety I don't
feel like I was ever gettinginto too much that I couldn't
handle just with the supportthat I had around from the
(12:57):
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 to alittle 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 right foryou, or that's out of your
comfort zone or it's too much onyour plate right now.
And I feel like we sometimes getaway 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 experience wasamazing.
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 powerful tosee 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 stories andexperiences 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 overstep thatrole as someone with a lived
experience, as a context expert.
And I really appreciated that.
They really listened to what wehad to say.
They made edits based on what wehad 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 from itfeeling 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 questions toask, 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
(18:23):
and perspectives.
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 been somethingwhere doing the debriefs like
(19:05):
you have after those experienceswould help anybody that might
have a negative experienceidentify that this may be a
possibility, but you know, itjust depends on the situation.
Sometimes things don't always goas 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 MoMMA's 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 may
(19:49):
not think about on a daily basisor 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's storyand just empathizing for them,
because you are in a room withother people that have had lived
experiences that are similar butalso different and they may have
(20:09):
lost more, or you may have lostmore.
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
(20:30):
that we are able to have thatself-care moment and that we
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, MoMMA's 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, Amandaand 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 MoMMA's
Voices.
My name is Emily Taylor and I'min charge of engagement and
outreach.
One of the things I most enjoyabout working for MoMMA's 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 miss relatedto the birth of her third child,
a postpartum hemorrhagerequiring multiple blood
transfusions, surgeries, and amonth long stay in the I C U.
(01:30):
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 educator andinternational board certified
(01:53):
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, Emilyfor the, the warm introduction
and thanks for having me heretoday.
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 work wasto support some of the national
efforts to implement reliableevidence-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 the obstetrichemorrhage change package, it's
structured around the aimhemorrhage 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 them ormake sense of them engaging with
people like Emily and Amandamake it much harder for us to
kind of stay in that space.
In this case, our contextexperts helped to ensure that we
were centering, birthing peoplein our work and that we weren't
(06:36):
inadvertently suggesting changesthat might have unintended
consequences for futurepatients.
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 hear alittle 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 to hearfrom you first about what made
you get involved with advocacywork and how did you come across
the Mama's Voices training?
Amanda (07:11):
Awesome.
Thanks so much for having me ontoday, Emily.
Really excited to be doing this.
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 MoMMA's Voicesonline.
As I looked at the website and Isaw all of the partner
organizations that MoMMA'svoices, 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 major maternalhealth 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.
(08:28):
And I really liked that thistraining didn't feel that way.
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.
(08:50):
It can be heavy, especially forsurvivors.
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
(09:10):
prepared to be able to enterinto advocacy work at this
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 my nameand sent it to a few people who
knew that I had been involved inthis.
And yeah, it was, it was really,it meant a lot.
(10:07):
When you decide you want to makechange 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 MoMMA's 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 be prevented?
A lot of things that I would gothrough was prevention.
So looking through online, I gotinvolved with the preeclampsia
foundation and did some researchand surveys with them.
(11:22):
And then one day got an emailfrom MoMMA's 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 I wasactually getting into, but just
honestly, I'm usually generallyinterested in learning more and
(11:45):
seeing where this could lead asfar as myself healing and
helping other moms have betteroutcomes.
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 PFPs haven'tbeen paired yet, or the new ones
can have a little bit of anxietywhich is totally valid around
(12:15):
their first engagement.
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 MoMMA's Voices has always
been there to guide us through.
So I don't feel like even thoughthere was some anxiety I don't
feel like I was ever gettinginto too much that I couldn't
handle just with the supportthat I had around from the
(12:57):
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 to alittle 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 right foryou, or that's out of your
comfort zone or it's too much onyour plate right now.
And I feel like we sometimes getaway 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 experience wasamazing.
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 powerful tosee 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 stories andexperiences 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 overstep thatrole as someone with a lived
experience, as a context expert.
And I really appreciated that.
They really listened to what wehad to say.
They made edits based on what wehad 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 from itfeeling 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 questions toask, 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
(18:23):
and perspectives.
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 been somethingwhere doing the debriefs like
(19:05):
you have after those experienceswould help anybody that might
have a negative experienceidentify that this may be a
possibility, but you know, itjust depends on the situation.
Sometimes things don't always goas 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 MoMMA's 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 may
(19:49):
not think about on a daily basisor 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's storyand just empathizing for them,
because you are in a room withother people that have had lived
experiences that are similar butalso different and they may have
(20:09):
lost more, or you may have lostmore.
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
(20:30):
that we are able to have thatself-care moment and that we
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, MoMMA's 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, Amandaand 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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