The document discusses the need for a personal health record (PHR) tailored for children with special healthcare needs (CSHCN). It proposes a parent-controlled PHR that would provide features like storing health information, generating reports, coordinating care among providers, and linking to educational resources. The summary identifies the key requirements of a PHR for CSHCN, including care plans, condition-specific growth charts, and financial management tools. It also notes existing PHR products and barriers to widespread adoption. The proposed PHR aims to empower parents by giving them control over their child's health information.

1. A Personal Health Record for
Developmentally Delayed Children:
What’s needed?
V. Gibbons MD
St. Louis University School of Medicine
Department of Neurology and Psychiatry
Division of Child Neurology

2. What we’ll cover:
• What’s the need? Why do this?
• What’s a personal health record?
• Why does a PHR fit the needs of developmentally
delayed children so well?
• What would be the special requirements of a PHR
for CSHCN?
• What’s a proposal for such a PHR?
• What products are out there already?
• What are the obstacles?

3. What we’ll cover:
• What’s the need? Why do this?
• What’s a personal health record?
• Why does a PHR fit the needs of developmentally delayed children so
well?
• What would be the special requirements of a PHR for CSHCN?
• What’s a proposal for such a PHR?
• What products are out there already?
• What are the obstacles?

4. child neurologists : traders on the Silk Road
A corner of the Sunday market in Kashgar, the former crossroads of Asia,
where the the spirit of the Silk Road lives on. Every week, the different
peoples from Western China are joined by countless others from Pakistan
and the former Soviet Republics in one of the world's busiest and most lively
open-air markets. In this quiet corner a Uygur trader sells spices, many of
which have no doubt come from much further afield.

5. Gaps in Care Coordination
• primary care and specialists:
– No information sent to Peds specialist 49% of time; no feedback to primary
care 55% of time
– Dissatisfaction with quality of referrals (28% of primary care; 43% of specialists
rating information from the other)
• Emergency Department
– 30% of adults indicated regular physician not informed about visit
• hospital
– 33% of adults with chronic condition did not have follow-up plans post hospital
discharge
– 3% of primary care physicians discussed discharge plans with hospital
physicians
– 66% of time primary care follow-up post discharge was done without a hospital
discharge summary

9. Greenhalgh T et al. 2010
Ferguson T 1995

10. What we’ll cover:
• What’s the need? Why do this?
• What’s a personal health record?
• Why does a PHR fit the needs of developmentally delayed children so
well?
• What would be the special requirements of a PHR for CSHCN?
• What’s a proposal for such a PHR?
• What products are out there already?
• What are the obstacles?

11. Personal Health Record (PHR)
• An electronic, cumulative record of
health-related information on an
individual, drawn from multiple
sources, that is created, collected,
and managed by the individual or an
agent acting for the individual. The
content of and rights of access to the
PHR are controlled by the individual
or agent. The PHR is also known as
the electronic Personal Health
Record (ePHR).
http://www.hhs.gov/healthit/usecases/documents/PHCDetailed.pdf

15. There is evidence of a growing demand for PHRs. In a 2008 Deloitte
survey of health care consumers, 78% of respondents indicated that
they were interested in having online access to medical records and
test results provided by doctors, while 76% were interested in online
access to an integrated medical record, 72% in online scheduling of
appointments, and 69% in a website providing information about
health conditions or treatments [1]. The Center for Information
Technology Leadership (CITL) reported that PHRs could result in an
annual net value of $19 billion, based on a 10-year implementation
period and an 80% adoption rate by the US population.

23. What we’ll cover:
• What’s the need? Why do this?
• What’s a personal health record?
• Why does a PHR fit the needs of
developmentally delayed children so well?
• What would be the special requirements of a PHR for CSHCN?
• What’s a proposal for such a PHR?
• What products are out there already?
• What are the obstacles?

24. synergies
medical informatics
evidence-based
medicine
patient-centered
medical home

25. CP comorbidities
orthopedic
problems
epilepsy
behavior
problems
sensory
problems
vision
hearing
touch
mental retardation,
learning problems
cerebral palsy

26. cerebral palsy:
particular advantages of a PHR
• lifelong condition
– medical information dispersed over time
– need for long-term, developmental planning
• multiple medical, functional problems
– various providers involved
– brokering communication difficult
– families negotiate solutions in a vacuum
• school interactions vital
– no natural line of communication with medical realm
– home base for multiple therapies
– integral determinant of total functioning
• grandparent/parent/sibling/child interaction
– multiple family members contribute differently
• access and communication difficulties with electronic modalities
– “poster child” for digital divide

27. The overarching needs that guided the identification
of core features for a parent-controlled "Pediatric
Medical Home Record" (Ped.MHR) were derived
from the "Personal Health Record" (PHR) principles
recently published, including:
• parents are ultimately responsible for decisions about their
children's health;
• parents should have access to a reliable and complete record
of their children‘s health information;
• parents should have control and accountability over how
these records are used and shared;
• information in the PHR should be understandable to parents
and other caregivers.

28. Personal Health Records:
developmental disabilities
Vincent P. Gibbons, M.D.
OHSU DMICE
BMI 520
Consumer Health Informatics

29. Appleyard RJ in OHSU Consumer Health Informatics
BMI520 winter 2009

30. What we’ll cover:
• What’s the need? Why do this?
• What’s a personal health record?
• Why does a PHR fit the needs of developmentally delayed children so
well?
• What would be the special
requirements of a PHR for CSHCN?
• What’s a proposal for such a PHR?
• What products are out there already?
• What are the obstacles?

31. The Medical Home was
conceptualized around one of the key
elements of comprehensive care:
ready access to all relevant
information about a patient with a
chronic or complex medical
condition… The primary care provider
("Medical Home") is envisioned as the
"central repository" for collecting,
managing, and appropriately sharing
this information, but this goal has yet
to be realized.
Abstract:
We describe a coordinated effort to identify
the core features of a parent-controlled
personal health record for children with
special health care needs, involving parents,
care givers, and healthcare providers. A
summary of the core features is presented
emphasizing needs that are not commonly
recognized as functions of a generic personal
health record. Our goal was to identify
requirements for personal records that
empower parents to effectively obtain,
organize, understand and communicate the
information necessary to help their children
receive the best possible care.

32. Children with Special Health Care Needs
(CSHCN)
• “Those who have or are at increased risk for a chronic physical, developmental,
behavioral, or emotional condition and who also require health and related
services of a type or amount beyond that required by children generally.“
• 12.8% of children
• Roughly 6.5% of US children experience some disability as a result of a chronic
condition, the most common ones being respiratory and mental impairments
• Rates of activity-limiting disability and racial disparities have increased between
1979 and 2000
– white children 4.07  5.97%
– black children 3.79  6.71%
• Typically, care for CSHCN is provided by numerous individuals (physicians,
therapists, dentists, counselors, etc.) and institutions (clinics, outpatient centers,
hospitals, etc.), and in multiple environments (home, day care, school, etc.)
– It is rare that these providers and settings share information systems or communicate
information in ways that result in comprehensive, coordinated care.
• The value of comprehensive and coordinated medical care for children with
chronic conditions and disabilities has been demonstrated by several studies.

33. Prevalence and Health Impact of
Developmental Disabilities
• overall prevalence 17%
– 0.2% cerebral palsy
– 6.5% learning disabilities
• provider visits ↑ 50%
• hospital days ↑ 350%
• lost school days ↑ 100%
• impact much greater among
those with multiple disabilities
• distribution of functional
limitations
– mobility 12.4/1000
– self-care 8.8/1000
– communication 52.9/1000
– learning 104.6/1000
• multiple disabilities 1.9%
– neurodevelopmental 29.9%
– learning-behavior 27.1
– physical 18.1%
• in special education
– physical 9.4%
– neurodevelopmental 16.7%
– Learning/behavior 17%
– asthma 3.4%
Boyle CA et al. 1994 Msall ME et al. 2003

34. findings
• Information acquisition
and storage
• Information access and
reporting (repurposing)
• Links to information and
knowledge resources
• Knowledge sharing and
collaboration
• Communication with
providers and care
givers
• Financial management
• Integration with local
and regional
repositories

35. information acquisition and storage
• Some patients have found audio recordings of physician
visits to be helpful both to review and remember details
and to allow others (e.g. family members) to better
understand the communications.
• pre-visit questionnaires, screening instruments, medication
response assessment tools, treatment diaries
• A PedMHR should provide multiple mechanisms to acquire
information, including electronic forms for direct data entry
paper scanning into digital documents, and uploading of
digital audio and video.
– However, information captured using these mechanisms has to
be properly structured and encoded to enable computerized
repurposing and decision support.

36. care plan
• Perhaps the most useful feature of a PedMHR for a
child with a chronic, complex condition would be a
documented care plan.
• Such plans allow details of care needed by CSHCN to be
recorded and shared with parents, providers, and
designated others (e.g., family members, educators).
• Care plans may also include goals against which
progress can be measured, timelines able to trigger
reminders of needed labs, appointments, or phone
calls, and links to information, instructions, and data
entry forms.

37. reporting/repurposing
• Parents often lament the need, particularly when their child is being admitted to
a hospital, to repeat their 'story" over and over to intems, residents, attendings,
specialists, etc. A PedMHR should dynamically provide preformatted and
customizable reports to alleviate much of this frustration and assure the accurate
transmission of appropriate and current information.
• Ideally, such reports should be provided electronically and include a rich set of
links and annotations that would offer additional details about specific problems,
prior reactions to medications, parent recorded symptom diaries, and other
features.
– These reports should also be configured with detailed utilization monitoring, enabling
parents to ascertain who accessed the information and when.
• Similarly, templates for 'standard reports’ should direct the extraction of
information from a PedMHR and its subsequent customization and formatting.
– letters of necessity
– plans of care
– school forms
– insurance reports…
• Condition-specific growth charts (e.g. Down syndrome) should plot growth from
measurements entered by providers or caregivers.

38. links to information and knowledge resources
• access to information about
– their child's condition
– available services and other resources
– educational interventions
– growth and development
– support groups
– financial management
– other aspects of caring for their child and family.
http://medhomeportal.org/

39. knowledge sharing and collaboration
• A PedMHR should enhance the ability of parents and physicians to
share knowledge, information, and ideas.
• Parents of children with complex conditions often become experts
in those conditions, particularly in their child‘s manifestations and
responses to treatments.
• A PEDMHR should enable parents and providers to share valued
resources (e.g.. web sites, articles, experiences, observations, best
practices) using a variety of online tools (e.g. blogs, message
boards, podcasts, wilds, vlogs).
• A PedMHR should make it possible for parents and providers to
critique existing resources and suggest new ones, and also to
allow parents and providers to develop, individually or
collaboratively, a wide variety of brand new educational
resources.

40. communication with providers and caregivers
• Should provide for asynchronous messaging and
consultations among parents, providers, and caregivers.
• “Curbside consultations" by primary care physicians with
subspecialists provide potential value in saved time and
expense for patients, expediting obtaining an opinion or
beginning an intervention, and enhancing the knowledge of
the primary care provider.
– Accomplishing such consultation electronically, linked to
authorized access to a PedMHR, could potentially be more
efficient and useful.
– Could also serve as documentation for billing patients or third
parties.
– Compensation would provide added incentive to physicians and
acknowledge the value of the service to all parties.

41. financial management
• Managing family finances and negotiating the maze of
insurance benefits can he a frustrating, nearly full-time
job.
• A PedMHR should help families by integrating financial
management features, including tools for tracking
medical hills and payments, links to insurance
companies, suppliers, and providers, and providing
reports for use with tax preparation software.
• Clinical activities tracked by a PedMHR should be used
to document and trigger the appropriate charges and
reimbursement.

42. integration with local and regional repositories
• Should enable a PedMHR to share
data with vital records, the state's
immunization registry, newborn
screening and birth defects
registries, and other programs'
databases.
• Should seek integration with such
systems and repositories, thereby
not only providing and retrieving
relevant data in real-time, but
also using "intelligent" (context-
aware) interfaces to find and
access the appropriate services.
• "Utah Clicks" is a web-based
"universal application system"
enabling parents to apply for
multiple services for children,
including:
– Medicaid
– "Baby Your Baby" (prenatal
support services)
– "Head Start and Early Head
Start"
– "Baby Watch" (early
intervention)
– the CSHCN program (evaluation
and treatment for
developmental and medical
problems).

43. https://utahclicks.org/uas/

44. What we’ll cover:
• What’s the need? Why do this?
• What’s a personal health record?
• Why does a PHR fit the needs of developmentally delayed children so
well?
• What would be the special requirements of a PHR for CSHCN?
• What’s a proposal for such a PHR?
• What products are out there already?
• What are the obstacles?

46. patient (family)-centric, spoke-and-wheel architecture
family
personal goals
technology interventions
independent living
end of life decisions
…
Financial
short-term
long-term
support
groups
consumer
health
information
community support
Easter Seals
March of Dimes
Blind Babies
…
School
psychoeducational
IEP’s
teacher reports
therapies
peer
interactions
primary care
(medical
home)
tethered EHR
diagnostics
Specialty 1
Specialty 2
Specialty 3

47. What we’ll cover:
• What’s the need? Why do this?
• What’s a personal health record?
• Why does a PHR fit the needs of developmentally delayed children so
well?
• What would be the special requirements of a PHR for CSHCN?
• What’s a proposal for such a PHR?
• What products are out there already?
• What are the obstacles?

48. PHR’s currently available
MyHealtheVet
Google health
Microsoft’s
HealthVault
Tolven

49. …

50. http://home.tolven.org/ accessed 4/2/2013

51. Personal health records (PHRs) are software
applications that patients can use to
communicate with their clinician, to enter
their own health data, and to access
information from their medical record and
other sources. Uptake of this new
technology in the United States is modest,
but increasing due to employers requesting
that health plans include PHRs, healthcare
reforms positioning PHRs as solutions, and
the market entry of Google and Microsoft. By
facilitating online access to medical
information, and activating the patient in
knowledge based collaborations with
clinicians, personal health records are
envisaged as having a key role in patient-
centered care.

52. We surveyed 10 topical PHR issues in a purposive sample of seven
institutions representing a spectrum of early adopter PHR providers.
We then assessed policy patient-centeredness of these policies
utilizing a framework of care that includes:
(1) respect for patient values, preferences, and expressed needs
(2) information and education
(3) access to care
(4) emotional support to relieve fear and anxiety
(5) involvement of family and friends
(6) continuity and secure transition between healthcare
providers
(7) physical comfort
(8) coordination of care
Within this framework we used evidence for patient preferences
(where it exists) to compare existing PHR policies, and propose a best
practice model.

54. 11

55. What we’ll cover:
• What’s the need? Why do this?
• What’s a personal health record?
• Why does a PHR fit the needs of developmentally delayed children so
well?
• What would be the special requirements of a PHR for CSHCN?
• What’s a proposal for such a PHR?
• What products are out there already?
• What are the obstacles?

56. This paper reviews the following challenges related to the
sharing of electronic health records:
- cost and security concerns,
- problems in assigning responsibilities and rights among the
various players
-- liability issues
- tensions between flexible access to data and flexible access to
physicians.

57. Consumers wanted PHRs to incorporate an array of information, including immunization records
(89%) and providers visited (88%). They expressed interest in several online activities, including
accessing their family members’ healthcare information (71%). Potential PHR use was associated
with perceptions that PHRs would improve privacy and security of medical information (odds
ratio [OR] 4.7; 95% confidence interval [CI] 1.1, 20.1), understanding regarding health (OR 3.7;
95% CI 1.3, 11.1), and overall quality of care (OR 3.6; 95% CI 1.2, 10.6). Potential PHR use was
associated with annual household income of more than $30,000 (OR 3.9; 95% CI 1.3, 11.9) and
experience looking up health information online (OR 3.0; 95% CI 1.1, 8.1).
Consumers expressed great interest in using PHRs and wanted comprehensive PHRs.
However, the “digital divide” between those with varying levels of Internet experience
and concerns about PHRs’ effect on privacy and security of medical information may
limit use. Designing PHRs that incorporate consumer preferences and developing
policies that address these barriers may increase consumers’ PHR use.
(Am J Manag Care. 2011;17(4):e104-e120)

58. Three groups of factors appeared to influence the participants' use of the PHR.
(1) Their perception that convenience, time saving (for them, their GP's practice
personnel and their GP), efficiency and effectiveness of care is a result of using the PER.
(2) Computer and health literacy contribute to being able to effectively use the PHIL
PHR usage impacts positively on the relationship with their doctor and vice versa, and
improves their ability to navigate the health system.
(3) It is not clear how PHR-related services are paid for, who pays and under what
circumstances.

59. We sought to evaluate the usability and functionality of HealthView, the PHR of the
Duke University Health System, using HCD methods. Study participants were asked
to think aloud as they carried out tasks in HealthView. They then completed surveys
and interviews eliciting their reactions to the web portal. Findings were analyzed to
generate redesign recommendations, which will be incorporated in a future release
of HealthView.
AMIA Annu Symp Proc. 2011;2011:1233-42. Epub 2011 Oct 22.

60. a place at the table
• patients
• guardians
– families
– government agencies
• PCP’s
• healthcare facilities
• payors
– government
– insurance plans
• product developers
– EHR’s
– 500# gorillas
– private companies

61. 10 cornerstone PHR issues

65. 2005
The last time it appeared on
the yearly Gartner Hype cycle.

68. Thank you!

69. Howbeit this kind goeth not out
but by prayer and fasting“
(Matthew 17:19-21)
In the lower register, Raphael depicts
the Apostles attempting, unsuccessfully, to free
the possessed boy of his demonic possession.
They are unable to cure the sick child until the
arrival of the recently-transfigured Christ, who
performs a miracle.
According to Goethe: "The two are one: below
suffering, need, above, effective power, succor.
Each bearing on the other, both interacting with
one another.“
In Italienische Reise, December 1787, quoted Schiller, I, 152
http://en.wikipedia.org/wiki/Transfiguration_(Raphael)
The Transfiguration
Raphael 1520