Cdc Skin Cancer

>> ladies and gentlemen, thankyou for standing by and welcome to the perinatal quality andcollaboratives webinar series. during the presentation,all participants will be in a listen-only mode. afterwards we will conduct aquestion and answer session. at that time if youhave a question, please press star followedby "1" key on your telephone. you may also enter questions atany time throughout the webinar by using the chatfeature located

in the lower left-cornerof your screen. if you need to reach anoperator at any time, please press star, "0." as a reminder, this conferenceis being recorded thursday, may 21, 2015. i would now like toturn the conference over to dr. henderson. please go ahead. >> hello everyone.

good afternoon. my name is zsakeba henderson and i lead the state-basedperinatal quality collaboratives activities in the division ofreproductive health at cdc. and i'd like to welcomeyou to our next series of webinars we're sponsoring on perinatal qualitycollaboratives. today's webcast willpresent a discussion of uuality improvementinitiatives addressing

engagement of patientsand families to enhance the collaborationto improve perinatal outcomes. this is part one in thethree-part series on patient and family engagement. at the end of this presentation,you'll have the opportunity to ask questions and participate in the discussionwith the presenter. you may also submit questionsvia the chat function. a recording of this webinarwill be archived on our webpage

atwww.cdc.gov/reproductivehealth/ maternalinfanthaalth/pqchandouts for this presentationwere made available with your reminder e-mail afterregistration for the webinar and will also be madeavailable again to registrants in a follow-up communicationafter the webinar. our speaker todayis tara bristol. tara bristol currently servesas the director of patient and family partnerships for theperinatal quality collaborative

of north carolina. she has over eightyears of experience as a patient/familyadvisor serving as a partner in quality initiatives. and over six yearsexperience coaching statewide and national hospital teams whenengaging patients and families in their qualityimprovement efforts. this includes facultyroles with the institute for healthcare improvement,the national institute

for children's healthcarequality, the north carolina hospitalassociation, patient and family centers carepartners, and others. we are very pleasedthat she will be sharing such an importanttopic with us today. i will now turn thepresentation over to tara. >> thank you, kebafor the introduction. it is such an honor to be apart of the webinar series and to share what truly is,as keba mentioned in the,

in my introduction, avery personal area of work that i'm so passionate about. so today is, we havethis discussion and hopefully we'll engage in some conversationstogether at the end. as keba mentioned, it'spart of a three-part series and today will be reallyan overview of patient and family engagement andsharing some of the examples of this work in perinatalquality collaborative.

so whenever i begindiscussions about patient and family engagement, i loveto start with this image. and if we were in a roomtogether i would have you shout out and tell me what it is yousee when you look at the image. but since we're not, i'llskip to the punchline. and say that usually when i am in a room the [inaudible]will say, some will say they see a rabbitand others will say a duck and even others will say thatthey see both of these images.

but it's the point beingthat we're all looking at the same picture, the sameimage at the same time and yet our experience of thatimage can be very different. well the same could be said of the clinical settingsin which we work. the experience of a patient andfamily member during their time in the hospital if you ask themto talk about it and reflect on what was important, whatwent well and what didn't. it would be very different thanthe response that would be given

by the providers, oftentimes. and so actually believe thatwe need all those perspectives to get a full picture of howcare is provided and received. and so it's not withouteveryone at the table that we can really dothe most effective job of improving healthcareoutcomes. now in 2012 we startedto hear patient and family engagementreferred to as the "blockbuster" drugof the century.

and that's not to say thatit wasn't important before that time or that folksweren't, it wasn't recognized, but that's when we started tohear a lot of terms related to patient and familycenter care and patient experiencebantered about. so i wanted to startus out and make sure that we all had amutual understanding or some agreed upon definitions. and so i'm going to givefolks a second here to read

through these before i applya little bit more comment on these definitions. so as you read throughthese you'll see we provided [inaudible] for thedefinitions and that really, while there are afew differences in how you'll see these termsdefined across organizations or bodies of work,they're all pretty similar and these are someof the leaders, thought leaders relatedwho've been sourced here.

one of the ways that i liketo think about the difference between patient and familycentered care vs patient and family engagement, is afriend of mine said, "you know, patient and family center careis really a noun, and patient and family engagementis the verb. it's the action andwhat's making it happen." and so that's kind of oneof the ways i like to be between those two concepts. patient experience of courseeveryone, anyone who works

in a hospital is hearinga lot about that and even in outpatient practices,really with hcaps. and things that are becomingmore and more tied to payment. and then at the bottompatient and family advisors, some hospitals or facilities usethe term "advisors" or others like to use "partners"or other nomenclature, but for the purpose of thispresentation you will hear the name "advisors" to talkabout patients and families who are partnering onimprovement effort.

but beyond the list ofdefinitions i think conceptually when you think about what doesit mean to engage and partner. i really this modelthat actually comes out of the netherlandsand some of their patient and family disabilities work. so many times yousee when patient and family center care is talkedabout you've got a little circle and it's got the patient in it. and there's a circle aroundit that's got the family

and then maybe the nextcircle is providers, but got the patient andfamily at the center. i really prefer this visualwhich is having everyone as equal partners or withco-responsibility working together in partnership. so with all the core conceptswe think about when we think about patient and family centercare, information center, collaboration, participation, partnership, dignity,and respect.

thinking about it in termsof viewing things not "to" or "for" patients but doingthings "with" patients. and i mentioned that in 2012 westarted to hear more and more about this concept and it wasso much the payment reform. but this has beengoing on a while now and for some organizationsthis has become a foundational priority. so in other words,you're investing time, money and people into this work.

i've listed up heresome leaders in terms of they've really invested quitea bit in terms of resources and they're nationallyrecognized, respected organizations thatare finding ways not just to engage patients andfamilies in the work that they're doing internally, but also to support otherfacilities, hospitals and other organizations indoing this work as well. so i think it's important thatfor those of you on the webinar

that we recognize that thisisn't something that is the nice to do, nice to thinkabout thing, but this just somethingthat's really seen as valuable by very respectedleaders in healthcare. one example herei want to provide, this comes from medstarhealth so many people on the line may be familiar with six sigma qualityimprovement becoming a really highly reliable organizationin order to optimize outcomes.

and one of the thingsthat medstar attributes to its success is to not-- they focus not just on thethings many of you are working on to improve outcomes, likeusing evidence-based practices, and hiring the rightfolks, and making sure that they have the righttraining and support, but going beyond that topartner with patients and family to make sure that again,we want this to reliability and that the only variation inhealthcare is that that comes

from the needs of thepatient-- patients and families. now with all of thiswork going on and so many leadingorganizations investing resources in this work, therehave come some frameworks, some models for how wemight engage patients and family members. this is one that i happento like an agency here, but on the left there aredifferent levels of engagement so maybe you're lookingat direct care

or bedside engagement ofa patients and families or maybe you're working moreat the organizational design in government's level whichwould be applicable for a lot of folks who are working inperinatal quality collaboratives or the policy making levels. and for the purpose ofour discussion today, i stick with the redboxes since we're talking about quality collaboratives. but you'll see that there reallyis a continuum of engagement.

they're so, and maybe thatyou start out with patients and families in moreof a consultative role. that's where, you know,let's get some feedback, let's send out some surveys andsee what patients have to say and then we'll bring themback to our committee and look at them and make changesbased on what we see. or maybe you're involvedto the level where you thoughtmaybe a patient or family advisorycouncil and so you meet

with them once a quarter or oncea month and you get feedback from them on issues and takethat feedback and make changes. or maybe you've evolvedfurther to the partnership and shared leadership levelwhere this is the co-ownership, co-responsibility and so it'snot going to a group of patients or family members and gettingtheir input and then going and internally making it happen. it's really having families and leadership positionsalongside you making decisions

and making things happen. and what you'll find i'msharing your home institutions but not every unit or care areaor part of your organization is in the same placein this continuum. and even within a departmentyou may find that for some of your work you're at onelevel and for other parts of your work you'rein different levels, and so you may find yourselfmoving back and forth on the continuum withdifferent work that you do.

another framework that comes out of the americanhospital association which is a little bit different. it still looks at kind ofthe bedside engagement level, which would be the individualand healthcare team brainwork. but looking alsoat organizations, but community too, becausethey know that so much of health happens outsideof the healthcare system and so it's a reallyimportant area when we talk

about engagement effort. but no matter where you areon any of this continuums or frameworks, what we knowis that just have a patient and family representative in the room changes theconversation in every way. jim conway is a former seniorvice president of the institute for healthcare improvement, itsformer chief operating officer for dana-farber cancer instituteand he's done a lot of work in patient and familycentered care.

but i think anyonewho has spent any sort of time bringing patientsand families into the work of their organizationwill be able to say, even if you have a patientor family member who is kind of sitting there, part of acommittee or team or meeting and even if they don't say aword, it changes the way we work and changes the way theconversation happens. and so even if you aren't at this co-leadershiplevel just start

because it does change theway that conversation happens. of course, especiallywhen you're talking about organizationalchange and leadership and it's not just any patient orfamily member that can be a part of that work, youreally need someone who displays certaincompetencies to be a partner. and when i say thati'm not talking about their educational level, what kind of backgroundthey come from,

i really love the conceptsand competencies that come out of patient and familycenters, care partners when they talk about who makes agood patient and family advisor. of course you want someonewho is solution-focused, so not bogged down andknow what went wrong, but how can we make surethis doesn't happen again? someone who's a positive,constructive collaborator who can get beyond thenegative aspects of care. someone with a representativevoice and so someone who is not

so focused on their own personalhealthcare journey or that of their loved ones, butcan see beyond that to, "how can we helphealthcare users in general?" and what aspect of myown personal journey in healthcare can i look forthemes that will be applicable to others in, in other patients and family members comingthrough this system. we also want people who havea teachable spirit and what that means is that it'ssomeone who doesn't walk

into the room thinking, "youknow, i'm going to go in there and i'm going to tell theproviders this is what needs to change, this is how it needsto change," but they're willing to go in and know thatthey have so much to learn and can be a partof that process and have a teachable spirit. and finally just someone who isable to establish partnerships because that's what we're doing after all is partneringtogether in this work.

the roles of patients andfamily members are many. this definition was puttogether at the institute for healthcare improvementforum in 2012, there were about over 20patient family members from across the countrywho worked in urban and rural settings inpatientoutpatient settings a real diverse group and we sattogether and came up with kind of all the rolesthat we have had as patient and family advisors.

and what you'll see as youread through this definition and think about how youare working with patient and family advisors and howyou might in the future, we talked about again one of those core competenciescoming back that they're able, the stories are usedas teachable moments to represent patientand family experiences. these are individuals whoare authentic when they come in to partner with you theydon't come in with the you know,

"here's my issue and i'mgoing to get this dealt with because thishappened to me." but they authentically trulywant to improve the system and they're thereas a collaborator. i wanted to provide an exampleof how partnering with patients and families canimprove outcomes. and this is pretty excitingdata because it's so kind of "hot off the presses" forsome people who don't live in this world and they're juststarting to right at the results

of partnership for patients, butfor those who aren't familiar, center for medicaid and medicarelaunched the partnership for patients campaign in 2011. and it really kind of kickedoff more in 2012 with the work of 3,700 hospitalsparticipated by way of 26 hospital engagementefforts. so these networks hadgroups of hospitals working with them toward these goals. and the two overarching goalswere first 40% reduction

in preventable hospital acquiredconditions and a 20% reduction in 30-day readmission. for their model forgetting this work done and you can see there's alittle blue circle in the middle which has the preventable andhospital acquired conditions and that, this is how we'regoing to get at this issue and then prove outcomes. you can see that patient and family engagementwas a huge part of this.

and so of these 3700 hospitals,they were being asked to take on this commitment toengage patients and family for part of this work. and so here were the measurementcriteria that were given to these hospitals, soat the point of care, the first goal you'll seehere was a planning checklist of patients and family. so what that means is thatfor any planned admission, that before the patient came

in there would be adischarge checklist, essentially that they would beable to go through to know what to expect, what needed tohappen before they went home, so they have thatanticipatory guidance. so that was one aspectof measurement. and the second one wasthat there would be change of shift huddles for thestaff and bedside reporting that would includepatients and families. under more policy and protocolsthe third criteria was pfe

proactive responsibility. so what that means is that therewould be either an individual or a department, someentity within the hospital that would be responsible forpatient and family engagement. and that as a part of thatthere would be a measurement of effectiveness sothey would be looking at what are the strengths,what are the needs in terms of patient and familyengagement. fourth, was havingan active patient

and family engagementcommittee of, whether that be apatient advisory board or some other committeeor an advocate or someone who would perceive care was inthe hospital who was sitting on quality improvementcommittee or a safety committee, something of that like. and then someone undergovernance it was a requirement of having a patientrepresentative on the governanceor leadership board.

and this shouldn't be kind ofwhat we think of there are a lot of healthcare systems outthere who the patients or family memberwho ends up sitting on the board is oftentimeshave been [inaudible] and that this needed to be really an authenticrepresentation of the patient population. the [inaudible] were thethis is part of the framework and measurement criteriathat was put out there

for those participatingin hospitals. carolina's healthcarehas been one of the hospital engagementnetworks that shared some of their data so far and thisis pretty exciting to come out because what we'll see ison the red line are in terms of patient and familyengagement, they don't call itthe low performers but they call the other cohort,the blue or the high performers, a patient is family engagement.

so these are the groupsthat are of that criteria that i just showed youhad four or five of those that they had accomplished. and compared to the other cohort who had not accomplishedthat goal. this particular measure isthe perinatal core measure for early electivedeliveries and so you'll see that there is a pattern and we can't call it a formalrelationship here but you'll see

that it looks as if thosehigh performers in patient and family engagementperformed better in terms of having fewer earlyelective deliveries. in minnesota, their hospitalengagement network was another one who looked at their outcomesstratified by high performers and low performers perpatient and family engagement. and here you'll seethe orange line, these are the lowperformers so they met 0 to 3 of those criteria that wereshared and the high performers

who met 4 or 5 of the criteria. and this happens to bethe readmission rate so what could we possibly havereduced in terms of readmissions and the high performers aredown there with a pattern of better outcome for that groupthan the pfe low performers. so this was reallythrilling data that came out. this is just anotherway of looking at some of the minnesota data, theyworked with some patients to develop this campaignand really loved the way

of looking at this visual. somewhere you cansee that each person in the picture represents250 prevented readmission and 1,000 more nights of sleep in your own bed,for minnesotans. but really exciting workthat came out of partnership for patients and more is beingwritten up and they're going into round 2 so, 2015 willhave more hospital engagement networks or groups working onthis partnership for patients

and reducing hospital acquiredconditions in partnership with patients and families. so with all these greatorganizations working on this and all this amazingdata coming out, why is it that everyone justhasn't jumped on the bandwagon and brought patientsand family members in to be partnersin their effort? well for a lot of folks it'sbecause we are very afraid of what it mightlook like out there.

what treacherous watersam i getting myself into by bringing a patient orfamily member in on a council or committee with mein a leadership role? and a lot of times it'sthat they feel like, "gosh, there's going tobe a patient coming in telling me everythingi did wrong and that here's what ineed to do to fix it." and that's why imentioned earlier it's about bringing theright folks in who have

that collaborative spirit. i love this quotefrom bev kridder because i think it reallyis a good way of summing up what collaboration reallymeans and should look like. "but no one interestgroup is always right and we're taking what youthink and what i think and what someone else thinks,and coming up with something that works for everyone." so if you move forwardwith this it's

that there must bean understanding of what collaborationactually looks like. this work also hasn'thappened faster because this is changingculture for a lot of people. this quote came fromone of our hospitals in north carolinafrom a nursing staff. they had just donepatient safety and awareness week campaign where families weregiven information on some

of the safety procedureswe have in the hospital like double-checking ids andhand hygeine and these things and when you asked staffwhat they thought about it, this was one of the comments:"we are professionals with a license to practice,we don't need families to let us know ifwe do it wrong." this is a big shift for us. another thing, and i don't thinkwe acknowledge this enough, but patient engagementis a skill.

it's not something thatwe're all born able to do. and i know many of you areproviders, will echo this, it's not the way that youwere trained when you were in nursing schoolor medical school. it's a differentway of practicing and it's not something thatyou're necessarily something that you're prepared for. but this is another bigstumbling block that can be out there for those who,maybe you really want

to engage patients and families but you're not quitesure how to do it. and then there arethose who want to do it, we're going to do it, but thereisn't really a strategic plan for making it happen. so this quote is from donberwick, cms and institute for healthcare improvement,probably familiar to many folks onthe webinar today. "health is not a plan,some is not a number,

soon is not a time." so how do we get beyondthat and really put it into practice ina strategic way? now i want to sharea story with you, our journey with the perinatalquality collaborative north carolina in our patient andfamily engagement effort, because i think as a qualitycollaborative organization we have the same stumblingblocks as i just stated and moving forwardwith this work.

whether it be the teams thatwe're struggling with of this with their institutional level, or internally how dowe make this happen, and so one of the first thingsthat we did when i was brought on as director of patientand family partnerships, was to develop an initiativejust like we would any of our other qualityinitiatives, specific to patient and family engagement. so this was the missionof this work.

we created an action plan just like we would any otherclinical initiative. and kind of our, the mainoutcomes we were looking for were these, that we wantedto have a processing place for identifying patientsand families. we want a facility to contactat least three and this was over each of twofour-month initiatives so in four months we want you tocontact three potential patient and family membersabout a system you

and your team improvementeffort. and then of those three youcontact, we want you to get in four months one of thefolks to come and be a part of your improvement teammeeting, or participate by phone or in some way beinvolved in the work. and we also want you to reachout there and maybe get out some of the cultural issuesthat i mentioned. and help supportand educate staff in engaging patientsand families.

so this was the action planthat we set out with in our work and so they supported this and in four months we hadtwo learning sessions, one at the beginningof the initiative and one to close it out. but the initiatives were a timenot just to provide hospitals, we provided them witheducation by bringing in wonderful speakerswho were doing this work in hospitals throughoutthe state.

but also were providingtools for them. i hope that many of you willfind this as a familiar template to you down in the right handcorner you'll see the ahrq logo they have a guide topatient and family engagement but have powerpoint andword documents, brochures, and fliers, and everythingyou could want as you're starting your journey with engaging patientsand families. so we not only use the templateto educate the people who are

at the learning session,but it shows this is one of the very turn-key toolsthat they would be able to use as they went back totheir home institutions. we also support and wantedto provide support for those who are leading this work toobecause a lot of the people who showed up to the learningsessions were like, "yeah, i'm the one who's beenidentified to do this work but i have no ideawhat i'm doing. you know, i'm a nurse on a unit.

i have no idea." and so a lot of what we neededto do was support teams in terms of how do you believethis works? how do you help moveyour department forward in this effort? and tying it back to qualityimprovement because it again, this isn't just thenice thing to do stuff and the fluffy stuff, butthese are tests of change that you can use and try out interms of what is the best way

to identify family members whothink potentially be members of our advisory committee? so we really work to makesure really bring home that these are things that youshould go home and test out. and report back onand collect data on. we provided a lot ofresources on our web too, so and i absolutely inviteeveryone who's interested on this webinar to visitour, the pqcnc lunch site, which has if you go down"initiatives" then "patient

and family engagement" a lotof resources that our teams use and so we pulled fromkind of institute for patient familycentered care, ahrq, articles from healthaffairs, other things that we knew were kind ofvital and highly utilized in the field putting them allin one place for our teams. we also as we would for otherclinical initiatives provide monthly webinars that werepartially content-based and also covered having teamsshare what they had been working

on because as folkswho are interested in quality collaboratives know, one of the absolute biggestbenefits of being part of a collaborative is beingable to learn from one another. and so it was that teamsharing that was a huge part of the patient and familyengagement initiatives. again emphasizing this isquality improvement work. we had teams report on whatthey were doing monthly and so who's working on this?

when is it going to be done by? how are you going to knowwhether the change was a success or not? so emphasizing that with teams. and of course along with all ofthat there was data collections that went along with this. and so for us, the firstinitiative that we did for patient and familyengagement was really the numbers, how many folkshave you contacted?

how many of those agreedto assist things like that. but it was so importantto tie the data to patient and family engagement work it'svery easy to just kind of do it without tracking whatyou accomplished. and so putting this inplace, a structure in place for collecting this data wasa huge thing for many teams. and why some of the teams that participated have beendoing amazing work in the state in terms of partnering withpatients and their families.

but they came on board because, not just to sharetheir successes with other teams justbeginning, but also they needed to put their structurein place as well. so we end up having twofour-month initiatives, so out of our eight months that we conducted thiswork we have 15 hospitals that participated and overthose eight months they ended up contacting 156patients and family members

about potentially beingpartners in their work. and so on average, about55% of those patients or family members contacted,agreed to help assist in some way, whetherit be participating in in-person meetings or justsaying, "you know, i'd be happy to participate over email"just send me stuff you want to look at, want me to lookat, or i can join by phone or web, but not in person. so in some way, 55%agreed to assist.

and we during the last,the second initiative, so during four months, thetrick is to track what part of the return on investmentof this is the volunteer hours that patients and familymembers are putting in. so in four months the teamstracked 220 volunteer hours that came from patientsand family members which is absolutely huge. and one of the things that was so important was collecting thisdata so the team could go back

and be reporting thisto their leadership. that this is one of the benefitsthat came out of this work. and also over the courseof the eight months, over 1,200 providers wereeducated regarding patient techniques, best practices,and hopefully getting it some of the culture change,some of the outcomes that we would have lovedto look at in terms of satisfaction scoresor other outcomes, because of the timelimited nature

of doing a four-monthinitiative, [inaudible] initiative, wereally weren't able to track that sort of data,but our hope was just to provide this structure andframework so that as we move into our clinicalinitiatives then what you see up here is part ofour action plan for our current preeclampsiainitiative that we're working on was that the momentum built[inaudible] initiatives would follow the teams through so theywould be able to engage patients

and families in aclinical initiative. and so this is justa little snapshot to show the workis continuing now, not within their ownexclusive initiatives but within the currentclinical initiatives. and working in a stepwisemanner to really position teams to be able to effectively engagefamily members in their work. because at the end ofthe day what we want and what we know is goingto be the most reliable care

and the best outcomes is tohave family members working in partnership with us. some of you may recognize theman in the picture here standing and holding the sign that says, "199 days since thelast infection." he was in one of my initialphotos during my presentation holding his baby daughter. his name is jean-paul andhe's been working with us now for a number of years.

his involvement actuallycame from his daughter dying of a preventable infectionin our nic u after six weeks in the nicu and so aftershe died, baby gabby, gabby was her name, he said, "how can you make surethis doesn't happen again, to another baby,another family." and he then became involvedin our work with pqcnc and as we were doing ourcatheter associated bloodstream infection project.

and this is him at theend of the initiative with our team holdingup a sign that says, "our team has gone 199 days"and then this picture was taken since the last infection. so, you know, that these are thekind of stories we want to have where we can turn examplesof where care didn't go as it should have or wasn't thebest care it could have been, and turn it into experienceswhere we can partner and improve the way thatcare's provided in the future.

so before i kind of wrapup my talking portion, i wanted to leave you with justsome tips for successful patient and family engagement efforts. one is to identifychampions to drive this work. one of the easiest waysto go off the rails is when you're like, "yes we needto do it," and you're kind of doing it but no one'sreally taking ownership of it. so identify people who arepassionate about this effort to partner and give,take ownership of it.

set up systems for continuedcommunication with patients and families acrossyour team to making sure that they always knowwho they can contact if they have questionsor concerns, even if it's just they can'tremember did we change the meeting time or not? because they alwaysknow who they can go to. remain open-minded and agile,this work can be a lot of trial and error and so it takespatience and some flexibility

and to be able to do this, bepresent and actively participate to maximize collaboration. i think there's somany wonderful leaders as i've seen the folks onthis call from the names that are familiar, they'releaders on this call and i challenge youand encourage you to really actively be partof this process of partnering with patients and families because giving a blessingis important and one thing

but actively being at thetable for it is another. so be present and just tounderstand everything questions and share reflections openlyi think while [inaudible] and that's always the casebut it also doesn't mean that if you do havequestions or concerns that they shouldn't be raised. so making sure that thosethings are addressed now so that they don'tbecome a roadblock or a barrier in the future.

and finally startsmall but just start. i hear teams all the time say,"well, we're not ready yet." or "we don't want people to see, that we don't haveour stuff together." but really you have tostart before you're ready because if you wait forall the stars to align, that will never happen. so, start small but just start. so i know that this is a verykind of 10,000 foot level view

of what's been going onnationally as the leaders of this work in our upcomingwebinars we'll be talking more of the nuts and bolts andhave some healthcare providers and also how to select andorient to engage patients and families so i hope folkswill join the upcoming webinars but keba, i don't know if wehave any questions or if we want to open things up to questions? >> well, at this time if thereare any audio questions i'd like to let the operator know

that we can now openthe lines for questions. and i also wouldlike to remind you that you may submit questions tothe speaker as well at any time by typing them throughthe chat feature located to the left of your screen. >> and we know we have sucha great group on today, i would welcome folks to shareany successes they've had or barriers theyhave experienced and if there's any justlearning you just want to share

if it's not a question. >> i'd just like to let theoperator know that we're ready for questions at this time. >> yes, ma'am, if you would liketo ask a question you may do so, by pressing star 1 onyour telephone keypad. if your questionhas been answered, you can withdraw your questionby pressing the pound key. >> and while we're waitingfor any audio questions, i'd like to start with the firstchat question for you, tara.

this question isfrom bobbi pineda and it says are there specificfunding sources that are good for applying for fundingpatient engage research? >> yeah, that's agreat question. you know one of the fundingsources that is very specific to patient and familycenteredness, is the pcori so that is the patient centeredoutcomes research institute. and they love tosupport comparative effectiveness research.

and so anyone who [inaudible]that really engages patients and families at all levels, they have many rollingopportunities for funding. so that's a goodplace to start to look to see what optionsmight be available. you know, i know others, and iknow the question was specific to research, so anyprivate funders who do a lot with community support, grantsupport are good place to go to for patient family engagementresearch dollars and more

and more i think you saw mylist of leaders in this work who are really investing inpatient and family engagement and a lot of what i've seenfrom them is now you'll see in research, grantapplications they'll want to know how you're going toengage patients and families and so there are alwaysplaces to look i know at different times, i know robert wood johnsonhas been great place to look. if you're just lookingfor ways to fund patient

and family engagement effortslocally, to say we really want to start an advisory board, butwe don't have any money to pay for parking or things like that, connecting with volunteerservices and we'll definitelytalk about this more in the future webinars too,but that is a great place to go for funding becausethey often have a pot of discretionary money that theycan use or they can put patients and families throughas volunteers

so that they can gettheir parking paid for, and a meal paid for,things like that. also hospital relations, ourpatient relations department or patient experiencedepartments are good place to reach out to communicationin marketing department within a hospital sometimes hasa budget for this type of thing. and then just reaching out toorganizations in the community. so i hope that kind ofprovided somewhat of a direction and if there areany more specifics

about that i'm happy to answer. >> thanks so much, tara. we have another questionfor you from annette bey. and the question is howdid you identify disease or condition to target? and sustainability. can you address that as well? >> so i think in terms ofthe conditions to target, in terms of the perinatalquality collaborative

and what we're doing right now so we have two currentclinical initiative for working on one being preeclampsiathat i mentioned and the other beingneonatal abstinence syndrome so helping [inaudible]education and improve outcomes for babies goingthrough withdrawal. they were areas of focus thatwere identified by our state as these are clinical areas thatwe feel we need to focus on. so the identification wasreally driven by clinical need

in our state, not at allby patient and family kind of engagement needs orwhere we wanted to go in terms of that route. of course our goal is always toreduce mortality and morbidity and perinatal care and so that'swhere we tend to drive towards and so the patient andfamily engagement part of it just comes along withwhatever our clinical dockets that we've chosen soobviously when we talk about neonatal abstinencesyndrome

and we're telling teams weneed to find a family member to be part of yourteam, it's a population that is has lessstability in their lives so it's much more challenging,their family members that challenge staffat the bedside, so that's why it wasn't oneof the easier places for us to start in our patientand family engagement but it's also the patientswe have been able to partner with it's been someof the most rewarding

from what we've learned fromthem and they're authentic and the vulnerability they'rewilling to share with us. so that's really how theclinical areas are chosen. in terms of sustainability,we and i'm not sure if the question wasgenerally about sustainability for the quality collaborativeor specific to patient and family engagement, wehave very purposefully laid out in all of ourfunding requests the need to engage patients and familiesand that they are a vital part

of these effortsand so my position and the whether it be moneyto cover the learning sessions or webinars or thingslike that for patient and family engagement allbeen a part of those budgets and so i think those who havefunded us they've seen the patient and family engagementaspect of our work as an asset and because maybe helpedus in getting funding. i believe we haveanother question for you on the chat sideof the questioning

and this question isfrom patti lee king. and the question is,hi tara, thank you. do you have any examples ofhospital teamwork on patient and family engagement activities around the conservativemanagement of preeclampsia? >> hey patti. yes, so i, a lot of whatthe teams have been working on in terms of preeclampsia, i've been around the educationmaterials so i know a lot

of folks out there are have used in california's greatstate tool kit had a lot of educational materialsthat came from the preeclampsia foundationthat they had adapted in that. so the teams that are workingwith patients [inaudible] to be spending their effortson working on those materials because one of thethings we've heard a lot about those materials is thatthey need to not be kind of a "here's a piece of information,here's another brochure

that i'm putting in this stackof papers for you to take home with you at discharge." that it really needs tobe customized to the needs of the specific patient. and so not just a general"call if your blood pressure's between this and this." that it is, "this and this, foryou, specifically, tara bristol" as a patient because they know that every patient's alittle bit different.

so i know that some ofthe teams are working on that just how do wereally make this customizable for the patient's needs and thenthe very tricky part is how do we make sure andwe've run into this with neonatal abstinence toohave do we ensure the staff are utilizing this andgoing through this at bedside with the patient. you know, just because we havea great tool and material, like for the teamshave developed the

for who are using modifiedfinnegan have adapted, created scoring sheetsfor parents to use so they observe how their baby'sdoing and are able to write that down, but staffaren't always introducing that to the family andso it's not being used and so i think justbeyond the creating of these things it's gettingthrough the challenges of from the patient perspectiveshow could we more easily get these into your hands in away that they'll be used?

so that's where weare right now. i anticipate as wekeep doing this work that they'll start looking atother ways of engaging them, to preeclampsia project. >> that's fantastic, tara. thank you so much. we're going to give youanother opportunity. are there any other questions,you can ask at this time by pressing star 1 forall your questions,

you may also ask a questionvia the chat function. and if there are no furtherquestions, we'll go ahead and conclude our session today. first i'd like to thanktara bristol for giving us such an excellent presentation on perinatal quality improvementinitiatives addressing patient we'd also like to thankyou all for participating in this webinar and inviteyou to provide feedback about this presentation andthis webinar series as a whole.

we'll be contacting you afterthis webinar for your input. we hope that our webpage and this webinar serieswill facilitate exchange of information andpromote visibility of perinatal quality improvementactivities throughout the country. we encourage you to joinus for the next webinar in this series entitled,"training and supporting providersfor successful patient

and family engagement." you may also visit ourwebpage for further details about upcoming webinars andinformation to learn more about how cdc's supportingperinatal quality improvement collaboratives. thank you again and havea wonderful afternoon. >> ladies and gentlemen, that does concludeyour webinar for today. we thank you for yourparticipation and ask

that you please disconnectyour line. presenters please hold.