EPIC Podcast: Wayne Mauri and William Senior

Join Yessi Cubillo, a Quality Insights ESRD Network 3 Patient Engagement Specialist, Wayne Mauri and William Senior, both Patient Subject Matter Experts, as they discuss their experiences as active participants in their facility’s monthly QAPI meetings.

Learn more about Quality Insights End-Stage Renal Disease (ESRD) Network 3.

This material was prepared by Quality Insights Renal Network 3, an End Stage Renal Disease (ESRD) Network under contract with the Centers for Medicare & Medicaid Services (CMS), an agency of the U.S. Department of Health and Human Services (HHS). Views expressed in this material do not necessarily reflect the official views or policy of CMS or HHS, and any reference to a specific product or entity herein does not constitute endorsement of that product or entity by CMS or HHS. Publication No. ESRD3-101123-GK-B

Transcript

episode of the empowering partners for improved care epic podcast each month you will hear informative interviews

about patients family and staff engagement initiatives including barriers and proven practices that may

impact your own interventions I yes it could be your patient engagement specialist for ESRD Network 3 will be

your host and today we will be talking about a patient's experience as active

participants in their facility's monthly Cooper meetings with us today our guests are William senior and Wayne Mayuri who

are both in Center dialysis patients at two different centers or facilities in New Jersey hey Bill and uh Wayne

um just a heads up first you're going to hear me call Bill William Bill because that's all we know him as yeah so uh

we're gonna call you from now on Bill as I already started from the beginning of this recording

um but welcome uh Bill and Wayne thank you for joining us today how are you thanks for having me great

so let's start with the both of you I want to hear a little bit about um you know tell us a little bit about your journey as dialysis patients and

and where are you today in your journey as dialysis patients sure bill you want

to go first or would you go ahead go ahead okay uh well mine is

um I guess fairly simple a little complex at the same time but uh I was born with uh polycystic kidney disease

and um in 2012 I received I had been on

a transplant list for about six years and I received a kidney transplant

um uh back in 2012. uh fortunately my wife was my Kidney donor at the time we

were not um uh perfect matches but we were compatible and my kidney lasted five

years and I lost it to rejection unfortunately but during that time I had

a lot of surgeries and also and now 100 percent anybody which means I have had a

lot of trans uh transfusions um have a lot of antibodies so to get a

new kidney is quite difficult but there's some new um Rollings out now that allow me uh a

better perspective to to have that happen so I'm looking forward to it I've been back now about six years I've been

in Trans in dialysis and things are going well so uh you know I'm looking

forward to hopefully finding a new kidney because that was the greatest five years of my life I'm not kidding

you so uh Bill how was your uh experience well I started out probably well the day

that my primary care physician since I had a creatinine level of 1.8 he said uh oh I'm like oh I

never heard him say that before he said don't tell me you have kidney disease and he said I'm gonna have to send you

to a nephrologist and so I went to a nephrologist and he said okay you have

kidney disease and slowly but surely you're going to need to be on dialysis so that made me uh

it didn't make me feel good but I was actually hoping that there was some way I could prolong uh that process

and a few years later I was on dialysis and uh I started out on PD

a peritoneal where they put the catheter in their stomach and I got a uh hernia

after one year almost to the day that I started and then

um I've been on hemo ever since and I'm looking for the day that I can

get off of dialysis I you know I I thrived on it I'm thriving on it I'm

living uh and I understand it's necessary to keep me alive but I want to come off of it and you're

you're currently going through the process as well bill for um transplant right to get a get a listing for

transplant and everything yes yes I am um I've been on a transplant list before

and I was inactive and then they rejected me because of low blood pressure now I'm on a

uh on at another place on the transplant list and uh I am inactive because they

said I had an infection I was actually being prepped for surgery for kidney transplant they sent that infection

they never found it but um so uh I've done everything I've been

required to do to get back on and active and active on the transplant list and I

did the last thing as far as I know it's not waiting to hear from them so I can't I'm waiting for the day where I

get a kidney yeah and just let me uh add a little bit too that you guys didn't mention both of you are active members

of our patient advisory Council um patient and family advisory Council the pfac

um and you guys have been with us many many years bill is actually our chair uh been our chair for quite some time as

well and Wayne has been with us very active participation with us as well at the network level so I really appreciate

having this opportunity to kind of chat and discuss a little bit of the work that you've been doing in your facility

you've seen the Journey of patient engagement in copy meetings throughout the years and you've been a part of that

and that's why I thought it would be important for others to hear about that Journey that you've gone through

um not just in your personal dialysis experience but as well in your Center and how you've brought your own uh

experiences to the table in those discussions so today we will cover two areas one of them is going to be your

first impression when being invited to the copy meetings and that for first experience and participating in a copy

meeting I know that was a while back for many of you for for both of you but let's let's get a little bit deeper into

those uh first experiences and also the second part is how was your role involved at the facility as how how's

your role I'm sorry how has your role evolved at your facility as a patient representative or a subject matter

expert which is what we call you guys so let's start off by talking about that first impression

let's talk about how were you guys first introduced to joining to the copy meetings and how did you hear about copy

meetings and that participation in The Cooperative meetings I can start off with this one um

I was told by the social worker at my uh Center I didn't know what a coffee meeting was I didn't uh

you know I I had no idea but she saw that I was you know active I asked a lot

of questions I was trying to help patients so she said maybe you want to

be part of this copy meeting well I said sure I mean I was excited about

it but I think uh initially uh it wasn't something that uh the center cared about

too much or it seemed that they were a little bit nervous what did I want to get what I wanted to attend the copy

meetings for what was I going to ask they were giving me um statements like

um you know you would be uh getting information about patients and that's

illegal help them you know HEPA would be against this and I

you know I I didn't agree and then I I talked to you Jesse on the network and

you sent me some questions to put to them and just to interact with them like

as best I could and next thing I know I'm in the copy me uh and it started

um I usually start the copy meeting and I I'm there like 10 15 20 minutes and

then I'm out you know and I was nervous the first time I I you know everybody looking at me

what is he going to say uh but I did have questions and uh you know they seem

very receptive to him actually especially the uh the head nephrologist and uh

so I was glad I was there nice how about you Wayne a very similar uh I I had no

clue I had no idea what a copy meeting was but um uh my Center manager came to me

um and had suggested that I attend their their monthly meeting uh she said I

talked to the uh we have an ephrologist that comes in uh every other week in the

uh his assistant comes in every week so obviously I have a lot of conversations

with them and that's how I guess they spoke to the center manager and

suggested maybe I attend this meeting so when they told me um uh would you like to attend the copy

meeting I you know I thought they were kidding because you know Poppy what's copy me you know but it was their their

monthly association meeting uh and I've been attending now for a couple years and at first I felt I was attending for

I I guess being a voice uh to come for for complaints to other patients because

at the time it was before covad when we would meet in the lobby and talk and you

know have discussions about what was going on who thought what and uh for some reason they would voice them to me

you know so that's what I felt like I was at first but uh since then it has

really uh evolved into I think a a good relationship between

um the the ones that associate the nephrologists the doctors I mean the uh

the center manager and and all others that attend I think there's been a

relationship we've built now of honesty and trust and now there's a lot of conversation and we talk about a lot of

different things and they allow me to make a lot of different recommendations now I'm not saying they're all accepted

but they they at least allow me to talk about it so it's been very good it's been really good and you know I can go

into detail of things but uh yeah we'll get to that in a minute yeah yeah yeah I

appreciate that but I I wanted to hear you guys share what was that first experience kind of being invited to the

meeting uh but I think what we often hear from patients that are initially participating or the staff themselves

when they're participating into the meetings is they don't know what that first meeting is going to be like what

to expect from that first meeting did you personally feel prepared when you went to that first squappy meeting uh

what do you think could have been done a little better or what would you have what would you suggest to others and say

hey if you do this I would have if I would have probably felt better joining a copy meeting so from that first

experience can you recall what could have been done a little differently or what was done that actually helped you

feel uh better joining that copy meeting the very first time well it's up to you would you like me or

sure I I I I felt what I did was was the

right thing to do I listened I didn't come in blasting with guns about

problems and so forth I listened to what went on and I spent the I'd say 90 of

the meeting just listening to what they had to say and what they wanted to talk about so when I got into the

conversation it was what what the conversation should have been about not

not my complaints my my ideas my thoughts and so forth that's what I

brought to the meeting after that first meeting um because then I looked to uh uh I

guess to kind of modify uh what I needed to say and and one part of that was

bringing our meetings our conference calls that we have uh bringing them to

the meeting and associating everyone who is attending to what we talk about and I

think they really appreciated that yeah it's kind of like Building Bridges between what U.S the facility

representative and also being at the network level participating with us and hearing some of the work and ideas that

we're coming up with and that you guys are giving to us bringing that back to the facility Bill built some of those

bridges and yeah they hear enough complaints I mean we bring complaints but they're

brought in a different way yeah good I wanted to really I'm sorry now I don't

go I wanted to really put them at ease that this was not going to be a complaint session from me relaying

complaints and I think that made them relax a little bit um

uh you know I just told them I mainly talked about at least at the initial

meeting about patients that didn't know why they were there and how we how I

thought they should uh talk to them and just you know help them to understand that it was important that they were on

dialysis to live and uh one young lady would talk to me and she would say uh

I don't know why I'm here it's too much time out of my life you know I have a family and

you know that made me feel really uh you know I was just I was sad and I'm

like how come she doesn't understand this don't don't they get information or

she may have gone into I think she went in the hospital and next thing she knew she was on dialysis and

you know so anyway there were more than one patient like that I just uh told

them that you know I heard this and maybe there would be a way that uh communication could be better to uh they

could understand why they're there and why they need to stay there and the importance of being on dialysis and they understood that you

know so yeah you hear that very often too that a lot of patients start dialysis straight from the hospital they

didn't have a chance to hear what their options were home dialysis uh transplant

anything they're just you know straight from the hospital going to the center so he's a very overwhelming experience and

Bill you serve to that patient as a peer mentor which is you know another program that we're working on but this is way

before we were working on this program you as a patient were able to serve as that go-to person that um and another

Patient felt TR and trusted to uh to be able to hear from your personal experience and kind of hear and say

rather than a doctor or a nurse or another facility staff it was from a peer like her uh to hear what uh some

words of encouragement and guidance during that period of time difficult period of time in her life so that was

that was uh that was important that's part of the discussions that you were having with your team in those Cooperative meetings so I think it's

twofold you're not just going there to hear what they're doing but you're there also to kind of provide some support and

guidance on other things that the facility might not be aware of uh so that's great I think that's great

um another thing I wanted to kind of talk to you guys about was now that you've been participating in these copy

meetings for quite some time Bill you shared with me back when we were doing

um uh uh other projects with the network you were doing the audio the audits the infection audits at your facility to

um so you've you've been very involved and Wayne bringing back feedback to your to your facility in regards to the work

that we're doing at the network but how what other topics are you guys talking about now nowadays what topics are you

talking about during your copy meetings and what discussions are happening and what is the team sharing with you during

those Cooper meetings well I I think an example is uh and

first and foremost I think it's important to note this um they have regulations that they have to

live one by and and Hippa is really one of the main ones so understanding what

they're allowed to say and what they're allowed to talk about in front of you and what they're not I think it's

important to understand you know no names no one talks about specific names

in these meetings I don't they don't in front of me while I'm there and I think

that's important to to respect that because they really have to have major guidelines that they have to live by

um now one of the things that we're talking about is I made a recommendation

back a while ago about having uh a tape put on that we do at

tape and put it on the TVs because every once a month they go through emergency

um um specifics about what you can do during emergency what you're supposed to

do what you're allowed to do how you can remove yourself where you need to go and

I said you know that's all well and good when you talk to us about that but if everyone saw that once a week on the TV

and we just played it I think that would would give a better uh imprint in their

mind of what they should be doing in case of that emergency and we never know when it's going to come so what we've

done now is we've participated in planning uh to put this tape together

now we had to go through a lot of things to get corporate to recognize it and to

approve it and so on and so forth but that's all being that's taken a while but now uh in the meeting I had

yesterday they said you know they talked to uh I guess the audio person about

what's the exact tool now we need to do this and that's where we're at so there's a lot of things come out of come

out of these meetings if they're they're good recommendations and you have a uh I

I guess a a group that wants to listen to to planning new things and helping I

think that's a great idea uh Wayne um and bringing that education to the 4 Forefront and having that you know

replaying that capability something that you already have at the facility making use of it and and improving some of that

education that you're doing I think that's a great greater way of approaching and you brought that idea to the team and they're running with it and

they're going with it with with you and and making those improvements so I think that's that's great to hear how about

you Bill well one thing I can remember talking about was starting a support group for the the center and

um they love the idea uh I uh actually had another person with me

as an SME and uh we wrote a proposed or he wrote The Proposal uh and uh they

thought it was a good idea the um the nephrologists head nephrologist was

he thought he thought it was a good idea and that shocked me and he said I'll be on there I'll support you uh

uh and I just thought that that was a a wonderful idea because you know I don't

get a chance to talk to a lot of patients but I talk to as many as I can if I see someone new I'll talk to him

and uh now then it got to a point where the social worker would say uh Bill

somebody wants to talk to you and I said well maybe they can we can they can join the support group and they're like yes

they want to talk well what happened actually happened was people were calling me outside of the support

and I would talk to them for hours and when the support group started they weren't they weren't part of it and

so I mean that's basically the way it's gone you know but um I just like the

idea and I know people need support and uh I'm not saying people are depressed but they just sometimes they want to

know somebody's going through the same thing they are you know and I call it a family I really believe that we're in a

family you know and uh uh there are a lot of people that have kidney disease and uh

just need to talk and support one another yeah and I've I've seen that too Bill like there are it's all on the

personality of the person too how comfortable they feel sharing or being part of a group versus one-to-one with

another with a with a mentor and kind of speaking to them one to one they feel a lot more comfortable just kind of

opening up uh in a one-to-one setting then opening up in a group setting and that's why you may be seeing that so

it's good to see that but a big takeaway that I take from what you both share is that you have the medical director of

the center involved in in in in you being a participant in this uh copy

meetings in the activities that you guys are suggesting that happen at the center uh you have the staff involved but that

medical director is backing you guys up and and and supporting the work that you guys are doing together with the team so

I think that's great and that's what motivates and continues that engagement uh at the facility level which

oftentimes as you said at the beginning uh many don't see the the the benefits

of of having a patient or why do we have a patient participate in the copy meetings what's the benefit of having a

patient participate in the Cooper meeting and that's exactly what what we're talking about the fact that you guys are able to bring from the

patient's perspective some interventions that they might have not thought about uh is the importance of having that

patient voice it's like like saying talk about the patient without the patient what are you

really doing there right um so to have that input I think is very very important

um I wanted to talk to you guys a little bit more about um some of the biggest barriers because I know we've you guys have been doing

patient uh engagement in copy meetings for quite some time even before covet

happened as you mentioned um and then through covet I know you guys probably like stepped away a little

bit because that in-person participation wasn't allowed anymore um did you guys started participating

via teleconference or did you take a pause in between um I did you do a mix of teleconference

in person how did that work during that period I am was only in person I I never did a

teleconference redid in person no I I I'm sorry that's not true because we a

couple times we did a couple phone conferences uh during the height I guess

of coved um but most of the time it was I started in person and uh that's where we're at

again uh I I think that's so beneficial and just to to mention a barrier I I

think the main barrier is the group uh all thinking that you're there as a

patient advocate and not to recommend improvements in the center now obviously

you need a center manager and fortunately I do that is open to almost

anything a wonderful person okay and very caring and to know that what I'm

talking about is only to improve the center and and all of their jobs so them

being open to that I think is very important and and knowing that you're not only the advocate like I said

because coming in and with guns blazing about all the problems is not the way to

achieve their trust and their support so I I think that's what needs to be done

well said bill uh could you ask yeah yeah no problem so

during the pandemic I know we um I took some space in between participating in the facility many

participated via teleconference uh others participated in person when things settle down a little bit as Wayne

mentioned his facility started started implementing teleconference and as well like what are some of the biggest

barriers maybe you identified in that continuous patient engagement or your participation at the facility uh whether

it be new staff working in the center and how to roll that in that continued participation uh from a patient's

perspective how did that continue happening so just wanted to hear from you a little bit about that yeah the first thing I thought about was covet

um because I used to go there uh every uh uh every month and uh be in person but

after covet starts uh you know affected everyone then uh for a while we

weren't meeting at all and then they started doing teleconferencing and that's what we do now

um but um I noticed that most of the people that I started with or the

administration that was there is gone yeah even the social worker uh we have a

new social worker but now she is just now really getting uh being dedicated to

our Center she was going around the two or three centers and uh it just it

wasn't the same but she is now very active uh and we've talked about me

being back uh involved in the copy meetings I I I probably haven't really

attended a copy meeting uh on Telephone tele conference for five

months uh and I just think the administration just sort of uh lost me but uh I think that's

changed the other meeting the other day I had a meeting with a nephrologist and he said uh hopefully you'll be there

next month um another barrier sometimes is they

change the meeting dates and that's been a hindrance to me because I make appointments and I have other meetings

and I'm like uh you know if we can't start at the at the start time

I could come in later or I could uh just talk to you and you bring the question

there but I don't want to keep doing that I want to be I want to hear my voice uh

not that I'm so important but the patient's voice is important yeah yeah and uh you know representing the

patients and uh so uh you know there were just some

things that happened that you know was a hindrance to um not being able to uh attend yeah and

uh and I think Bill as you mentioned just uh that changing schedules it's

something that I hear from the facility staff themselves you know uh oftentimes the meetings every schedule multiple

times but the fact that now the nephrologist or the medical director knows that a patient will be there kind

of holds them a little more accountable to being able to uh maintain or hold on to that scheduled meeting because they

know how difficult it is for you to make it there as well and travel back to the center to be a part of that meeting so I

think some facility staff are actually appreciative of the fact that they now have that patient engagement and they're

able to kind of continue that having that study kind of uh meeting schedule within with the medical director

um but it all falls back we come back is the medical director you know uh providing that support and as you said

um you lost that contact with the staff for a period of time because there was a turnover of Staff in your Center which

we saw we've been seeing in through throughout many dialysis centers as a result of the pandemic and now you are

starting to kind of regroup with that new team in your Center by bringing your voice and saying hey I I was here

actively participating uh I would like to continue with that participation and that engagement and then your

nephrologist or your medical director was able to acknowledge that yes you you are an important member of our team and

yes we do look forward to have a new future in future meetings I think that's important it's not one person's responsibility right to follow up and

make sure that you are part of that interdisciplinary team during those discussions but it's a responsibility of

everyone medical directors Social Work dietitian social worker everyone that's

uh part of that that team the nurse and everyone uh so my last question to you guys is

um and something maybe you can share as a words of motivation what could you share as a learned practice that has

strengthened your relationship with the facilities interdisciplinary team um as you've engaged in these copy

meetings what has made from that beginning meeting that first meeting that you started at the center to today

what do you feel has strengthened that relationship between you and your team

well I say for me is they know one

that I care about patients they know too that I care about my

health and I care about what's going on in the center and so they know now when

I ask a question or I might call someone over a tech or a nurse and say that

person went to the supply uh case and they had the gloves on then

they just came over to my my machine you know I don't know who they touch with

those gloves I don't know um but they went to you know they usually go without the gloves on to the

uh Supply case so you know uh I think before when I was

talking about that in terms of hand sanitation I think they complain I you know it kind of like Mr senior Mr senior

but now you know they asked me um have you seen what's going on there uh what what do you think what do you

think you know yeah and uh so I mean I think it's really grown uh over the

years that I've been there even though I've been there in like five months but uh they just know that I'm gonna have

something to say I'm gonna have some questions uh [Music] and uh you know like they used me on the

hand sanitation uh monitoring and uh they wanted me to delete that and uh you know that that

made me feel real good uh and I did see some things you know that I had to report but uh you know

they I think they're really appreciate the information the feedback so great and I think that the what you're

what you're saying is building a trust between one another that it took time

for you guys to build that trust but it happened and once it's there that trust uh now Builds on to the additional

opportunities for you since you're at that Center looking at everything that's happening who else better than you to

kind of provide some of that feedback and and and and you know they trust you enough so that you can be able to say

honestly to them this is what happened this is what I'm seeing how can we make it better not just hey you guys are

doing wrong ah you're you're in trouble now with with me you're in trouble with the network or the department like no

it's how can we make it better for foreign yeah I think that's uh that's a very

important thing is how can we all make things better uh again complaining

doesn't get anywhere uh advising of how to change I think is important and I

think building that trust I think that's that's extremely important and I have to say that what you bring to the table as

far as those conference meetings um allowing us to uh participate in

what's going on with all the different centers I think when I bring that back to our meeting that Hey listen there

this Center is doing this and it's helping in this way that's extremely

important and they want to hear that they truly want to hear how to make the center better because that's what

they're reporting on they're reporting on what goes on in their Center and how

they can improve uh you know patients lives so again and us being very honest

up front and knowing they can trust us in that I think is extremely important

yeah yeah honesty and trust and just opening those lines of communication and

giving it a chance yeah and and kind of working together and we have you guys as perfect examples

of that happening and how it has been possible you've jumped over some barriers yourselves to get this done and

make it happen but it is possible and as we heard from our last uh podcast from the facilities point of view it's also

possible to to to make it happen so I I want to thank you both thank you so much for being with us today sharing their

experiences joining us and um I definitely learned a lot from the two of you and I look forward to hearing more

in the future you'll definitely be back for future podcasts because I know you have additionals we heard the transplant

experience and and your journey and all of that so you'll probably be back with us to share a little bit more about that

in the future but uh I want to thank you both for being with us today and to our listeners out there if you have specific

topics that you want to share with us that you want to hear a little bit more about in future podcasts please email me

at Y kubio at qualityinsights.org I was about to give you my personal email by now

it's almost similar so I almost did that but uh thank you all for listening to the empowering partners for improved

care podcast the Epic podcast stay tuned for next next month topic and thank you both for joining us today take care have

a great day thank you Jesse