The MyStory project was designed to personalize care for pediatric patients at the University of Minnesota Amplatz Children's Hospital by capturing each patient's unique story. It incorporates the psychosocial needs of pediatric patients to create individualized, patient-centered care and engage children in decision making. The MyStory tool documents each patient's story in the electronic health record and is used to personalize care and involve patients in care planning. Outcomes data shows improved patient satisfaction scores related to understanding their condition, involvement in care, and feeling like the hospital feels like home. Lessons learned include the importance of patient involvement, interprofessional collaboration, and using the electronic health record to consistently deliver a personalized experience.

1. MyStory, A Multifaceted
Initiative to Capture Each
Pediatric Patient’s Story
Inspiration for the MyStory Project
MyStory was designed to personalize the care we provide to pediatric patients
and transform the hospital experience for the patients and families we serve at the
University of Minnesota Amplatz Children’s Hospital.
Background and Significance
• Americans had 36 million hospital stays in 2000.
o Approximately 18% of these stays were for children and adolescents 17 years and younger.
o This accounts for about 13% of all days in the hospital, and about 9% of total hospital charges (AHRQ, 2000).
• There is resounding evidence displaying the importance of capturing the psychosocial aspects of a child being admitted to
an acute care hospital setting.
o Incorporating the psychosocial needs of pediatric patients creates individualized, patient centered care that engages the
child in decision-making.
(Kelsey, Abelson-Mitchell & Skirton, 2006, Prilleltensky, 2010, Prilleltensky, Nelson & Peirson, 2001, Reed, Smith, Fletcher & Bradding, 2003, Sartain, Clarke & Heyman, 2000)
• Despite the growing body of literature that emphasizes the need to talk directly to the child and stresses the importance
of obtaining the child’s view, this is rarely done in practice.
• Sadly, children are often silent consumers of health care; children’s voices remain generally excluded from decision making
and care planning in acute care hospital settings (Coyne, 2006).
Methodology Evidence-based
• Build an intervention with patients and
families that will be an Always Event ™
when caring for children — MyStory.
o MyStory as an Always Event is an
™
interprofessional effort to capture each
MyStory
patient’s “story.” Personalizing
o Document the “story” in a convenient Interprofessional Pediatric Patient and Family
tool within the electronic health Collaboration Involvement
record. Care
o Use the patient’s “story” to personalize
the care we provide to patients, and to
involve them in care planning and
decision making.
• Personalize the care for all pediatric
My Story:
patients by learning their story and This is to be used as a template only! Give to health care team to enter in EPIC.
(Teen)
engaging them in care planning and My Story:
(School Age)
My name is:
My caregiver(s) name(s) are:
You can call me: Age:
decision making. My name is: You can call me: Age:
I am from:
My friends are:
My caregiver(s) name(s) are:
My favorite hobbies/activities are:
I am from:
My friends are:
Tools and Implementation
This is to be used as a template only! Give to healthgood at: to enter in EPIC.
I am care team
My favorite toys or things to do are:
In the future, I want to:
I am good at:
My Story: My past experience with being sick or coming to the hospital:
(Infant and Toddler)
• The MyStory tool is built into the When I grow up, I want to be:
Draw a picture of what you want to be when you grow up:
My name is: You can call me: Age:
electronic health record. My caregiver(s) name(s) are:
Before a procedure, I need to know:
I am from:
• We have also developed a MyStory Special parent requests:
tool to be used in the outpatient
uofmchildrenshospital.org
My favorite toys are:
areas:
I become upset or cry when:
uofmchildrenshospital.org
Things that comfort me are:
o Surgery waiting room You can distract me with:
My past experience being sick or coming to the hospital:
o Pediatric Emergency Department
o Pediatric Hemodialysis Department
uofmchildrenshospital.org
MyStory is a
navigator/button
Outcomes on the left
The MyStory project outcomes are measured
by a number of metrics that have been put
into a dashboard that is formatted to match
the organizations clinical quality and safety University of Minnesota Amplatz Children's Hospital - MyStory Dashboard
dashboard(s). Data Source Metric
Measurement
Time Period
Pre -
MyStory
Data
Previous
Measurement
Current
Measurement Target
Long-
Term
Target Trend
Status vs.
Target
"Hospital workers talk to you?" 1Q 12 96.1% 85.7% 100% 100% m
• NRC Picker survey:
Satisfaction Survey
"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
Children's
"Find ways to make hosp feel like home?" 1Q 12 58.3% 64.8% 79% 100% k
o “Was the information about his/her "When hurting, help you feel better?"
"Like how they took care of you?"
1Q 12
1Q 12
80.0%
83.3%
83.9%
87.5%
90%
92%
100%
100%
k
k
*
"Did the Doctors pay enough attention to your experiences and
condition discussed with your child
4Q 11 62.6% 96.9% 86.4% 100% k
suggestions in caring for your child?"
"Did the Nurses pay enough attention to you experiences and suggestion
NRC Picker Parent Satisfaction
4Q 11 63.6% 94.9% 88.0% 100% k
in caring for your child?"
in a way he/she could understand” –
"Would you have liked more involvement in making the decisions about
4Q 11 67.3% 90.8% 77.3% 100% k
your child's hospital care?"
"How much did you participate in your child's care, such as feeding or
4Q 11 93.9% - 95.2% 100%
bathing?"
57.6% pre-implementation to "Was the information about his or her condition discussed with your child
in a way he or she could understand?"
"Did someone explain to your child the tests that were being done in a
4Q 11 57.6% 96.4% 81.3% 100% k
96.4% post-implementation.
4Q 11 64.5% 94.8% 83.3% 100% k
**
way he or she could understand?"
Do My Caregivers Know My Favorite Things? Jan 12 - Feb 12 41% 53% 60% 75% k
Networ
Well
Get
Do My Caregivers Know Things I Don't Like? Jan 12 - Feb 12 30% 9% 60% 75% m
• From the Children’s Satisfaction Survey:
k
o “Find ways to make the hospital feel like Arrow Up = Performance Improving Green = Going Well
Key:
home” – 58.3% pre-implementation to
Arrow Straight = Performance Same Yellow = Monitor
Arrow Down = Performance Declining Red = Requires Mgmt Attention
64.8% post-implementation.
Arrow Up = Performance Improving Green = Going Well
* Questions taken from Children’s perceptions = Performance Same
Arrow Straight survey© Lindeke,L.,
Fulkerson, J., Chesney, M., Johnson, L., Yellow = Monitor
Arrow Down = Performance Declining Red = Requires Mgmt Attention
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©
o “Like how they took care of you” –
83.3% pre-implementation to
87.5% post-implementation.
Lessons Learned Implications for Policy and Practice
• Patient and family involvement in the creation and • Involving patients and family in initiatives from the
implementation of this type of initiative is invaluable. point of inception to sustainability is vital for success.
• The innovative nature of a child’s mind. • Emphasis and rigor can and should be applied to
• The shared value of grassroots initiatives. patient/family centered care initiatives to measure
the impact(s) of how care is delivered.
• The strength of interprofessional collaboration.
• Innovation and optimization of the electronic health
• The abilities of transformational leadership.
record to create high reliability and consistency of the
• The power of an individual’s personal “story”. patient’s care experience across continuums of care.
Transforming the care we provide to children
MyStory is being funded by the Picker Institute as an Always Event ™.
Cheristi Cognetta-Rieke, DNP, RN; University of Minnesota Amplatz Children’s Hospital, Minneapolis, MN