MyStory, A Multifaceted Initiative to Capture Each Pediatric Patient’s Story

Cheristi Cognetta-Rieke, DNP, RN; University of Minnesota Amplatz Children’s Hospital, Minneapolis, MN

Methodology•BuildaninterventionwithpatientsandfamiliesthatwillbeanAlwaysEvent™ whencaringforchildren—MyStory.

o MyStory as an Always Event™ is an interprofessional effort to capture each patient’s“story.”

o Documentthe“story”inaconvenient toolwithintheelectronichealthrecord.

o Usethepatient’s“story”topersonalizethecareweprovidetopatients,andtoinvolvethemincareplanningand decisionmaking.

•Personalizethecareforallpediatricpatientsbylearningtheirstoryandengagingthemincareplanninganddecisionmaking.

Tools and Implementation •TheMyStorytoolisbuiltintotheelectronichealthrecord.

•WehavealsodevelopedaMyStory tooltobeusedintheoutpatient areas:

o SurgerywaitingroomoPediatricEmergencyDepartment o Pediatric Hemodialysis Department

Outcomes TheMyStoryprojectoutcomesaremeasuredbyanumberofmetricsthathavebeenputintoadashboardthatisformattedtomatchtheorganizationsclinicalqualityandsafetydashboard(s).•NRCPickersurvey:o “Wastheinformationabouthis/her

conditiondiscussedwithyourchild inawayhe/shecouldunderstand”– 57.6%pre-implementationto 96.4%post-implementation.

•FromtheChildren’sSatisfactionSurvey:o “Findwaystomakethehospitalfeellike

home”–58.3%pre-implementationto64.8%post-implementation.

o “Likehowtheytookcareofyou”–83.3%pre-implementationto 87.5%post-implementation.

Lessons Learned •Patientandfamilyinvolvementinthecreationandimplementationofthistypeofinitiativeisinvaluable.

•Theinnovativenatureofachild’smind.•Thesharedvalueofgrassrootsinitiatives.•Thestrengthofinterprofessionalcollaboration.•Theabilitiesoftransformationalleadership.•Thepowerofanindividual’spersonal“story”.

MyStory is being funded by the Picker Institute as an Always Event ™.

Data Source MetricMeasurement Time Period

Pre - MyStory

DataPrevious

MeasurementCurrent

Measurement Target

Long-Term

Target TrendStatus vs.

Target

"Hospital workers talk to you?" 1Q 12 96.1% 85.7% 100% 100% m

"Listen when you told them something?" 1Q 12 85.0% 78.6% 93% 100% m

"Let you make choices?" 1Q 12 70.0% 67.9% 85% 100% m

"Find ways to make hosp feel like home?" 1Q 12 58.3% 64.8% 79% 100% k

"When hurting, help you feel better?" 1Q 12 80.0% 83.9% 90% 100% k

"Like how they took care of you?" 1Q 12 83.3% 87.5% 92% 100% k

"Did the Doctors pay enough attention to your experiences and suggestions in caring for your child?" 4Q 11 62.6% 96.9% 86.4% 100% k

"Did the Nurses pay enough attention to you experiences and suggestion in caring for your child?" 4Q 11 63.6% 94.9% 88.0% 100% k

"Would you have liked more involvement in making the decisions about your child's hospital care?" 4Q 11 67.3% 90.8% 77.3% 100% k

"How much did you participate in your child's care, such as feeding or bathing?" 4Q 11 93.9% - 95.2% 100%

"Was the information about his or her condition discussed with your child in a way he or she could understand?" 4Q 11 57.6% 96.4% 81.3% 100% k

"Did someone explain to your child the tests that were being done in a way he or she could understand?" 4Q 11 64.5% 94.8% 83.3% 100% k

Do My Caregivers Know My Favorite Things? Jan 12 - Feb 12 41% 53% 60% 75% k

Do My Caregivers Know Things I Don't Like? Jan 12 - Feb 12 30% 9% 60% 75% mGet

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University of Minnesota Amplatz Children's Hospital - MyStory Dashboard

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Arrow Up = Performance ImprovingArrow Straight = Performance SameArrow Down = Performance Declining

Green = Going WellYellow = Monitor

Red = Requires Mgmt Attention

Arrow Up = Performance Improving Arrow Straight = Performance Same Arrow Down = Performance Declining

Key:Green = Going Well Yellow = Monitor Red = Requires Mgmt Attention

* Questions taken from Children’s perceptions survey© Lindeke,L., Fulkerson, J., Chesney, M., Johnson, L., Savik, K. (2009). Children’s perceptions of healthcare survey. Nursing Administration Quarterly, 33(1), p. 26-31.

*

** Questions taken from NRC Picker Patient Satisfaction Survey©

**

Transforming the care we provide to children

Evidence-based

Interprofessional Collaboration

Patient and Family Involvement

MyStoryPersonalizing

Pediatric Care

Inspiration for the MyStory ProjectMyStorywasdesignedtopersonalizethecareweprovidetopediatricpatientsandtransformthehospitalexperienceforthepatientsandfamiliesweserveattheUniversityofMinnesotaAmplatzChildren’sHospital.

Background and Significance•Americanshad36millionhospitalstaysin2000.oApproximately18%ofthesestayswereforchildrenandadolescents17yearsandyounger.oThisaccountsforabout13%ofalldaysinthehospital,andabout9%oftotalhospitalcharges(AHRQ,2000).•Thereisresoundingevidencedisplayingtheimportanceofcapturingthepsychosocialaspectsofachildbeingadmittedto anacutecarehospitalsetting.

o Incorporatingthepsychosocialneedsofpediatricpatientscreatesindividualized,patientcenteredcarethatengagesthechildindecision-making.

(Kelsey,Abelson-Mitchell&Skirton,2006,Prilleltensky,2010,Prilleltensky,Nelson&Peirson,2001,Reed,Smith,Fletcher&Bradding,2003,Sartain,Clarke&Heyman,2000)

•Despitethegrowingbodyofliteraturethatemphasizestheneedtotalkdirectlytothechildandstressestheimportance ofobtainingthechild’sview,thisisrarelydoneinpractice.

•Sadly,childrenareoftensilentconsumersofhealthcare;children’svoicesremaingenerallyexcludedfromdecisionmaking andcareplanninginacutecarehospitalsettings(Coyne,2006).

My name is: You can call me: Age:

My caregiver(s) name(s) are:

I am from:

My friends are:

My favorite toys or things to do are:

I am good at:

When I grow up, I want to be:

Draw a picture of what you want to be when you grow up:

My Story:(School Age)

� is is to be used as a template only! Give to health care team to enter in EPIC.

uofmchildrenshospital.org

My name is: You can call me: Age:

My caregiver(s) name(s) are:

I am from:

My friends are:

My favorite hobbies/activities are:

I am good at:

In the future, I want to:

My past experience with being sick or coming to the hospital:

Before a procedure, I need to know:

My Story:(Teen)

uofmchildrenshospital.org

MyStory is a navigator/button

on the left

My name is: You can call me: Age:

My caregiver(s) name(s) are:

I am from:

Special parent requests:

My favorite toys are:

I become upset or cry when:

Things that comfort me are:

You can distract me with:

My past experience being sick or coming to the hospital:

My Story:(Infant and Toddler)

� is is to be used as a template only! Give to health care team to enter in EPIC.

uofmchildrenshospital.org

Implications for Policy and Practice •Involvingpatientsandfamilyininitiativesfromthe pointofinceptiontosustainabilityisvitalforsuccess.

•Emphasisandrigorcanandshouldbeappliedto patient/familycenteredcareinitiativestomeasure theimpact(s)ofhowcareisdelivered.

•Innovationandoptimizationoftheelectronichealth recordtocreatehighreliabilityandconsistencyofthe patient’scareexperienceacrosscontinuumsofcare.