Parent-controlled PediatricMedical Home Record

Roberto A. Rocha, MD, PhDroberto.rocha@utah.edu

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Objectives

• Understand the concept of amedical home record for childrenwith special healthcare needs

• Learn about requirements for aparent-controlled personal healthrecord (PHR)

• Discuss the implementationstrategies for the parent-controlledPHR

Children with Special HealthCare Needs

(CSHCN)

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CSHCN: Definition

"those who have or are atincreased risk for a chronicphysical, developmental,behavioral, or emotionalcondition and who also requirehealth and related services of atype or amount beyond thatrequired by childrengenerally”

McPherson, M., Arango, P., Fox, H., Lauver, C., McManus, M., Newacheck, P. W.,

et al. (1998). A new definition of children with special health care needs. Pediatrics,

102(1 Pt 1), 137-140

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CSHCN: Prevalence

• About 12.8% of children in the US–Approximately 9.3 million individuals

–20% percent of households withchildren include at least one with aspecial health care need

• Relatively common disorders, suchas asthma, attention deficithyperactivity disorder, and seizures–Definition subsumes well over one

hundred congenital and acquiredconditions, most of which are veryuncommon

van Dyck PC, Kogan MD, McPherson MG, Weissman GR, Newacheck PW.

Prevalence and characteristics of children with special health care needs. Arch

Pediatr Adolesc Med. 2004 Sep;158(9):884-90 6

CSHCN: Vulnerability

• Considered a particularly vulnerablepopulation that is directly affected byaccess, cost, quality, and coverageweaknesses in the health caresystem1

–CSHCN consume 80-90% of health caredollars spend on children2

2. Lewit EM, Monheit AC. Expenditures on health

care for children and pregnant women. Future of

Children, 2, 1992. 95-114.

1. Peters CP. Children with Special Health Care

Needs: Minding the Gaps. Background Paper,

June 27, 2005. National Health Policy Forum.

Peters CP. Children with Special Health Care

Needs: Minding the Gaps. Background Paper,

June 27, 2005. National Health Policy Forum.

Leatherman and McCarthy, Quality of Health Care for Children and Adolescents: A Chartbook, 2004. The Commonwealth Fund

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CSHCN: Effects

• Roughly 6.5% of US childrenexperience some disability

– result of a chronic condition, commonones being respiratory and mentalimpairments

Newacheck, P. W., & Halfon, N. (1998). Prevalence and impact of disabling chronic

conditions in childhood. Am J Public Health, 88(4), 610-617.

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CSHCN: Rates of disability

• Have increased over the past twodecades, as have racial disparities indisability prevalence

–The rate of activity-limiting disabilityfor white children increased from 4.07%to 5.97% between 1979 and 2000

–Rate for black children increased from3.79% to 6.71%

Newacheck, P. W., Stein, R. E., Bauman, L., & Hung, Y. Y. (2003). Disparities in the

prevalence of disability between black and white children. Arch Pediatr Adolesc

Med, 157(3), 244-8

Peters CP. Children with

Special Health Care Needs:

Minding the Gaps. Background

Paper, June 27, 2005. National

Health Policy Forum.

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CSHCN: Care delivery

• Typically,–Numerous providers: physicians,

therapists, dentists, counselors, etc.

–Different institutions: clinics, outpatientcenters, hospitals, etc.

–Multiple environments: home, day care,school, etc.

– Frequent and complex care transitions

• It is rare that these providers andsettings exchange information inways that result in comprehensive,coordinated care

Leatherman and McCarthy, Quality of Health Care for Children and Adolescents: A Chartbook, 2004. The Commonwealth Fund

Medical Home

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CSHCN: Optimal care

• The value of comprehensive andcoordinated medical care for childrenwith chronic conditions anddisabilities has been demonstratedby several studies

–American Academy of Pediatrics and thefederal Maternal and Child HealthBureau have been promoting the“Medical Home” concept

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Medical Home: Definition

Care provided in the Medical Homeis “accessible, family-centered,continuous, comprehensive,coordinated, compassionate, andculturally-competent”

–The primary care provider (“MedicalHome”) is envisioned as the “centralrepository” for collecting, managing,and appropriately sharing information

Ziring, P., Brazdziunas, D., Cooley, W., Kastner, T., Kummer, M., Gonzalez de

Pijem, L., et al. (1999). Care coordination: integrating health and related systems of

care for children with special health care needs. Pediatrics, 104(4 Pt 1), 978-981.

Leatherman and McCarthy, Quality of Health Care for Children and Adolescents: A Chartbook, 2004. The Commonwealth Fund 20

Medical Home: Quality

• Key measures–child has a usual source of care

–child has a personal doctor ornurse

–effective care coordination isreceived when needed

–child has no problems obtainingreferrals when specialty care isneeded

–child receives family-centered care

Leatherman and McCarthy, Quality of Health Care for Children and Adolescents: A Chartbook, 2004. The Commonwealth Fund 22

Medical Home: CSHCN

• A typical pediatric practice will have200-300 CSHCN

–Only one or two patients each with anyof the less common diagnoses

• Common challenges

–Maintain knowledge of the many chronicand complex conditions

–Familiarity with relevant subspecialtyand community services and other keyresources

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Medical Home: Parents

• Desire knowledge about theirchildren’s conditions and aboutavailable resources

–Priorities for information and resourcesdiffer from what physicians believe themto be, making it harder to developeffective partnerships

–Families are often highly motivated andfind valuable information of which theirphysicians may be unaware

Perrin EC, Lewkowicz C, Young MH. Shared vision: concordance among fathers,

mothers, and pediatricians about unmet needs of children with chronic health

conditions. Pediatrics. 2000 Jan;105(1 Pt 3):277-85

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Medical Home: Child record

• Only 21.3% of primary carepediatricians use an “ElectronicHealth Record” (EHR)

• Can physicians to offer a viable EHRsolution to CSHCN?

Utah Medical Home Portal

www.medhomeportal.org

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Portal: Partnerships & funding

• Development began in 2001

• Collaboration

– U of U Department of Pediatrics

– Spencer S. Eccles Health Sciences Library

– U of U Department of Biomedical Informatics

– Utah Department of Health

– Utah Family Voices

– Utah chapter, American Academy of Pediatrics

• Funding

– Small grants and a UDOH contract

– 2006 received a 3-year NLM InformationSystems grant

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Portal: Motivation

• Information needed by providers andfamilies is available on the web–Neither properly organized around their

needs nor easy to find

–Most knowledge resources focus onetiology and diagnosis, with relativelylittle attention to management or tochronic care and collaboration withcommunity services

• Consumer health information sitesmay be unreliable, confusing, oroverwhelming for families

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Portal: Goals

• Improve the care of CSHCN

• Foster a collaborative approach toproviding health care (“MedicalHome”)

• Reliable and useful information andsimplified access to resources forphysicians and families

–Help care and advocate for CSHCN

http://www.medhomeportal.org/ 31

Portal: Content numbers

• 8 content sections

–Currently limited to 10 DiagnosisModules within Diagnoses & Conditions(3 new nearing completion)

• 680+ pages of content

• 800+ links to other sites

• 600+ citations of scientific articles

• Information on over 2000 communityservices and resources

–Searchable or browsable by category

Parent-controlled PediatricMedical Home Record

(PedMHR)

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PedMHR: Motivation

• Parents spend significant time caringfor their child, but also:

–Managing multiple health care providersand the information generated by them

–Coordinating providers, insurancecompanies, day care, schools, etc.

• Amount and complexity ofinformation that parents need tounderstand, remember, andcommunicate is daunting

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PedMHR: Needs of parents (1)

• Accurate and complete records of care

– Enable proper coordination of various providersand caregivers

– Minimize the duplication of diagnostic andtherapeutic interventions

– Ensure the quality and safety of the healthcare their child receives

• Prompt access to records (and associatedinstructions)

– Facilitate understanding and compliance

– Enable efficient and reliable (sharing)dissemination of the information

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PedMHR: Needs of parents (2)

• Reliable reference information about theirchild’s condition and recommendedtherapies

– Enable understanding

– Promote compliance

– Support the education of family members orother caregivers

• A parent-controlled health record maybe a more feasible solution that could takeadvantage of and enhance collaborationwith the Medical Home

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PedMHR: PHR principles

• Parents are ultimately responsible fordecisions about their children’s health

• Parents should have access to a reliableand complete record of their children’shealth information

• Parents should have control andaccountability over how these records areused and shared

• Information in the child’s health recordshould be understandable to parents andother caregivers

The Value of Personal Health Records - A Joint Position Statement for Consumers

of Health Care. AMIA & AHIMA, 2006.

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PedMHR: Methodology

• Objective

– Identify (validate) the core features of anelectronic record that would be perceived ashelpful for families of CSHCN

• Approach

– Attempt to understand the daily life of thesechildren and their families

– A small group of parents with extensiveexperience in advocating for improved care fortheir children, and who were passionate aboutimproving systems of care for other families

– Survey + focus group + literature review

– Informal discussion with providers (U of U)

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PedMHR: Participants

• 5 parents were ultimately identified,representing children with the followingchronic conditions:– Down Syndrome (3 children)

– Celiac Disease (1 child)

– Cerebral Palsy (1 child)

– Cystic Fibrosis (1 child)

– Developmental delays not yet associated witha diagnosis (1 child)

– The mothers were the primary caregivers

• Local groups involved with the effort– Utah State University’s Center for Persons with

Disabilities, the Utah Down SyndromeFoundation, and the Utah Family Voices

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PedMHR: Survey

• Each family received a surveydesigned to help identify theircomputer literacy and the level ofcomplexity of the care required bytheir children

–The survey was preceded by a briefdescription of the project, along withphone and email contacts that could beused to obtain further explanations

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PedMHR: Survey instrument

1. How many medical providers is your child involved with?[Numeric]

2. How many other types of professionals is your childinvolved with? [Text]

3. Do you have a computer at home? [Yes; No]

4. Do you have Internet access? [Yes-Dial-up; Yes-DSL; No]

5. How often do you use the Internet (World Wide Web)?[Daily; Weekly; Monthly; Rarely; Other (specify)]

6. 6. How comfortable are you with using a computer? [VeryComfortable; Somewhat Comfortable; Not Comfortable;Other (specify)]

7. Do you use a Personal Digital Assistant (PDA) or hand-held organizer? [Yes; No]

8. What type of medical equipment do you use in yourhome? [Blood pressure device; Oximeter; Nebulizer;Glucometer; CPAP; Other (specify)]

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PedMHR: Focus group

• Families were invited to participate in afocus group discussion, organized as amediated phone conference call

– Each family described a typical day in theirlives related to their disabled children

– Each family was asked to elaborate on thepotential value and desired features of anelectronic parent-controlled health record

– The session lasted almost 2 hours and wasrecorded after consent was obtained from eachparticipant

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PedMHR: Topics discussed (1)

1. Please describe a “day in your life”, focusing onactivities related to your child.

2. If you could design the perfect system ofstorage and access to your child’s healthrecords, what would you want in that system?

3. How would you want to receive new informationand learn new activities helpful to your child?

4. What would you want to help you objectivelyrecord and analyze the progress your child ismaking based on the care plan from the doctor?

5. What would help you and your doctor detectproblems that may affect the treatment andtherapies that your child is receiving?

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PedMHR: Topics discussed (2)

6. Would you be opposed to having your child’smedical record on the Internet at a password-protected site?

7. Would you want a record of your child’sappointments, diagnoses, history, medications,providers, etc, as a reminder for you and tohand to new providers so you don’t have torepeat your story?

8. Should it include a way to send messages toyour doctor or other providers, or scheduleappointments, refill prescriptions, etc?

9. How about the ability to write down things toremember, notes, questions to ask, progressyour child made, etc., and to link that to yourprovider(s) or to guidelines to help identifyproblems?

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PedMHR: Traditional features

• Track provider visits

• Ask questions prior to the next visit

• Review treatments, labs and tests orderedand medications prescribed

• Edit the record, but with a provider orcare-coordinator validating its accuracy

• Link to patient-friendly medicationinformation

• “Make sure” that providers read what wasentered in the record

• Award password protection and proxyrights to designated others

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PedMHR: Core features

• Ease of accessing, recording, and organizinginformation about care

• Secure and customizable sharing of informationwith others in electronic or printed formats

• Focused links to relevant and reliable informationand decision support

• Links to services and other resources, both locallyand nationally

• Integration of voice recording, transcription, andindexing of visits with providers

• Integration of financial management tools

• Tools for creating and maintaining care plans,with reminders for parents and providers

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PedMHR: Information acquisition

• Conversations during physician visitsare highly valued by patients/parents

–However, much of what is said is missedor forgotten by parents after the visit,impairing compliance with treatmentand depriving family members andother caregivers of the opportunity tounderstand the “what, why, and how”of the physician’s suggestions

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PedMHR: Care plans

• Allow details of care needed byCSHCN to be recorded and sharedwith parents, providers, anddesignated others (e.g., familymembers, educators)

–May also include goals against whichprogress can be measured, timelinesable to trigger reminders of neededlabs, appointments, or phone calls, andlinks to information, instructions, anddata entry forms.

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PedMHR: Reporting

• Parents often lament the need, particularlywhen their child is being admitted to ahospital, to repeat their “story” over andover to interns, residents, attendings,specialists, etc.

– Provide preformatted and customizable reportsto alleviate much of this frustration and assurethe accurate transmission of appropriate andcurrent information

– Enable parents to ascertain who accessed theinformation and when

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PedMHR: Links to information

• Access to information about theirchild’s condition, available servicesand other resources, educationalinterventions, growth anddevelopment, support groups,financial management, etc.

– Integration with the MedHome Portal

–Context-aware and data-driven“infobuttons”

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PedMHR: Information sharing

• Enhance the ability of parents andphysicians to share knowledge,information, and ideas–Parents of children with complex

conditions often become experts inthose conditions

–Share resources using a variety ofonline tools (e.g., blogs, messageboards, podcasts, wikis)

–Critique existing resources andsuggest/create new ones, individually orcollaboratively

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PedMHR: Financial management

• Managing family finances andnegotiating the maze of insurancebenefits can be a frustrating, nearlyfull-time job

–Tools for tracking medical bills andpayments, links to insurancecompanies, suppliers, and providers,and providing reports for use with taxpreparation software

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PedMHR: Implementation

• How to get the record started?

–Ask parents to gather the record(multiple sources)

–Professional chart reviewer to create therecord

–PCP to review the initial record

–Parent would subsequently maintain it,with PCP being responsible for periodic(6 months) reviews

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PedMHR: Interesting issues

• Training (user literacy)

• Support (accounts, roles, permissions)

• Controlled access (by parents)

• Portability

• Parent-friendly content

• Integration with other electronic records

• Liability for providers

• Quality/validity of the data (annotations)

• Decision support for parents

• ...

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Acknowledgements

• Chuck Norlin, MD

• Alfred N. Romeo, PhD

• Gina Pola-Money

• Jefferson C. Sheen, MSW

• Families (mothers)

Thank you!

roberto.rocha@utah.edu