Personal Health Record for individual with cerebral palsy

Personal Health Record:
developmental disabilities

Vincent P. Gibbons, M.D.
Albany Medical College
and
OHSU DMICE
BMI 520
Consumer Health Informatics

Agenda
• What are PHR’s and what do we hope to
accomplish with them?
• What is cerebral palsy and why does it
beg for a PHR solution?
• What would be the composition and feel of
a PHR for the medical problem of cerebral
palsy?
• Are there any serviceable components
presently available?

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

• Ultimately, PHRs will succeed if patients use them enough
and they provide some combination of
– improved quality,
– increased safety,
– enhanced efficiency,
– and/or better patient satisfaction both for acute and chronic
conditions,
– along with a reasonable ease of use.
• These attributes are valued by various healthcare
constituencies – patients, providers, payers, employers, and
others – and may generate healthcare cost savings to some
or all of these parties.
• The PHRs might conceivably achieve widespread acceptance
and use if patients demand and employ them, even if the
PHRs do not deliver measurable value.
– However, under such circumstances, patients might have to pay
for PHRs directly.

Kaelber DC et
al.2008.

access to some form of personal health care record
• 70 million people in the US.
– Most patients may not even be aware of it.
• Surveys suggest that patients want to use PHR's, and believe that
they will be valuable.
• An estimated 50 million patients use the EPIC software system,
which includes a tethered PHR product.
• Department of Veterans Affairs (25 million veterans) has a web
based PHR called MyHealtheVet, with a variety of functions.
• Blue Cross and Blue Shield is planning to offer a PHR to its more
than 200 million members by the end of 2008.
• In the Dossia project, launched in 2006, large employers Intel, Wal-
Mart, Applied Materials, British Petroleum, Pitney Bowes, and
others, have committed millions of dollars to create a web-based
framework that will supply over 5 million of their employees with
access to personal health data through a common open-source
architecture framework.
• In the second half of 2007, Microsoft© debuted HealthVault™
which allows anyone with internet access the ability to search for
health information, store their own health information, and upload
their health information from home health devices.

Kaelber DC et al. 2008.

cerebral palsy
definition
• an abnormality of motor function (the ability to move and control
movements) that is
– acquired at an early age, usually less than a year of age, and
– is due to a brain lesion
– non-progressive.
• frequently the result of abnormalities that occur before birth, while
the fetus is developing inside the mother's womb. Such
abnormalities may include
– accidents of brain development,
– genetic disorders,
– stroke due to abnormal blood vessels or blood clots, or
– infection of the brain.
– In rare instances, obstetrical accidents during particularly difficult
deliveries can cause brain damage and result in CP.

http://www.medterms.com/script/main/art.asp?articlekey=11114

cerebral palsy
classification
• CP may be divided into
– spastic
• abnormality of muscle tone in which one or more extremities (arm or
leg) is held in a rigid posture
– choreoathetoid
• associated with abnormal, uncontrollable, writhing movements of
the arms and/or legs.
– hypotonic (flaccid)
• floppy – like a rag doll.
• treatment may include
– casting and braces to prevent further loss of limb function,
– speech therapy, physical therapy, occupational therapy,
– augmentative communication devices,
– medications or Botox injections to treat spasticity.

http://www.medterms.com/script/main/art.asp?articlekey=11114

CP comorbidities

behavior
orthopedic
problems problems

sensory
cerebral palsy problems
vision
mental retardation,
hearing
learning problems touch

epilepsy

Prevalence and Health Impact of
Developmental Disabilities
• overall prevalence 17% • distribution of functional
– 0.2% cerebral palsy limitations
– 6.5% learning disabilities – mobility 12.4/1000
• provider visits ↑ 50% – self-care 8.8/1000
• hospital days ↑ 350% – communication 52.9/1000
– learning 104.6/1000
• lost school days ↑ 100%
• impact much greater among • multiple disabilities 1.9%
those with multiple disabilities – 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

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

Appleyard RJ in OHSU
BMI520 winter 2009

Inverse information law

“…access to appropriate information is
particularly difficult for those who need
it most.”

Gunther Eysenbach (BMJ, 2000)

BMI520 winter 2009

Digital Divide in 2000 –
Computer & Internet Use
60
50
40
percentage 30
20 no disability
10 work disability

0
home home internet
computer internet use
no disability 51.7 31.1 38.1
work disability 23.9 11.4 9.9 Appleyard RJ in OHSU
BMI520 winter 2009

Digital Divide in 2004 –
Computer Use
80
Base: US 18 to 64 y/o
Forrester Research, Inc. 2004
(commissioned by Microsoft)
60

% working
40
adults
no disability
20 mild disability
severe disability
0 work use school use
home use (all) (among (among adult
employed) students)
no disability 74 62 49
mild disability 70 60 53
severe disability 54 47 44
BMI520 winter 2009

potential areas for PHR research
• Function evaluation is probably the most important area of PHR research. There is a
particular opportunity to evaluate the impact of PHR’s on care for patients with chronic conditions
From the patient's perspective, four general categories:
– information collection (self-centered and retrieved from external sources)
– information sharing (patients->others)
– information exchange (two-way data exchange)
– information self-management) allows patients to better manage their own health/healthcare)
• Adoption and Attitudes
• PHR architecture
– the three primary components of data, infrastructure, and applications
– compared to a hub and spoke model, with relative benefits and costs being related to the size of the hub
(robust applications at the disposal of the patient) the number of spokes (connectivity to multiple data
sources), and the thickness of spokes (completeness of health information sources).
– Future areas of research include interoperability, relative benefits and costs of different PHR architectural
models.
• Related non-PHR research
– patient/provider e-mail
– patient-generated computer-mediated medical histories.
• PHR business case.
– Private research foundations have until now provided most of the funding, with government agencies (in
particular the National Library of Medicine) increasing their funding.
– PHR's represent one of the areas that could receive top priority for research given their potential for
reducing costs and improving care.
• Conclusions:
– PHR's have the potential is designed appropriately adopted widely to reduce costs and simultaneously
improve quality and safety of care. The existing knowledge and base that underpins this work is surprisingly
limited and most of the fundamental issues remain unsolved. Additional research is essential, but unlikely to
be performed unless substantial additional financial support is committed to PHR research and evaluation.

Kaelber DC et al. A research Agenda for Personal Health
Records doi:10.1197/JAMIA.M2547 August 28, 2008.

Primary PHR functions
based on use of information from the patient’s perspective

• Information Collection – PHR functions that help patients to enter their
own health information and to retrieve their information from external
sources.
• Information Sharing – PHR functions that allow patients to engage in one-
way sharing of their health information with others.
• Information Exchange – PHR functions that allow patients to engage in
two-way data exchange with others.
• Information Self-Management – PHR functions that allow patients to better
manage their own health/healthcare. Examples of PHR functions in this
category include those functions that allow patients to record, track, and edit
information about their own health/healthcare, as well as obtain relevant
patient oriented disease information and decision support.

patient (family)-centric, spoke-and-wheel architecture
diagnostics

support
groups primary care
School
psychoeducational (medical home) Specialty 1
IEP’s tethered EHR
teacher reports
Specialty 2
therapies
Specialty 3

family consumer
personal goals health
technology interventions information
community support
Easter Seals independent living
March of Dimes end of life decisions
Blind Babies
…
…

peer Financial
short-term
interactions
long-term

http://www.ninds.nih.gov/disorders/cerebral_palsy/cerebral_palsy.htm

problems in actual practice
• Consumers using health websites they not have
adequate protection of their personal information.
• Visitors to health websites are generally not anonymous,
even if they think they are.
• Health websites recognize consumers’ concern about
the privacy of their personal health information. Many
have made efforts to establish privacy policies. Most fall
short of adequate protection.
• There is inconsistency between the privacy policies and
the actual practices of health websites. Many do not
adhere to their policies… or they change with time.

OHSU Consumer Health
CHF Report on the Privacy Policies and Practices of Health Websites Informatics BMI520
http://www.chcf.org/documents/ihealth/ComparingEHealthPrivacyInitiatives.pdf winter 2009

Industry self-regulation

• Health on the Net Foundation (HON)
http://www.hon.ch
• TRUSTe
http://www.TRUSTe.org
• Internet Healthcare Coalition
http://www.ihealthcoalition.org
• Health Internet Ethics Coalition
http://www.hiethics.org

OHSU Consumer Health
Informatics BMI520 winter 2009

What’s available now?
• tethered PHR
– EPIC MyChart
• Open Source PHR
– Tolven
• Medical expense tracking and planning
– QuickenHealth
• Web resources for the disabled
– JAWS 10.0
– personal planners
• Cognitopia Personal Planner
– disabilities-friendly e-mail
• AbleLink’s WebTrek Connect,
• Life Technology’s CogLink

OHSU Consumer Health Informatics BMI520 winter 2009

http://www.himss.org/Content/files/linkingpatients.pdf

overall satisfaction
• “Other things equal, I would prefer to
go to a doctor who provides MyChart.”
85
• “I can manage my health better by
using MyChart.” 75
• “I would recommend MyChart to a
friend.” 91


patient use of clinical e-mail
• 27% - health status updates (ER visits,
adverse effects)
• 18% - prescriptions
• 10% - referral
• 9% - health questions
– “just a few” inappropriate for e-mail
• 5% - test results

Katz S, Stern D et al. (2002) First large doctor – patient e-mail
study finds positive attitudes on both sides: but e-mail poses an
increased communications burden to the clinic. UMHS

An electronic personal health record provides the
consumer with an intuitive web-based application
to create, view, store, and share health care
information about themselves or on behalf of
those they look after (e.g. aged relatives, children
and those with disabilities); to communicate with
their care providers; and to access needed health
related information relating to their specific
conditions through the power of the Internet; and
to simply perform mundane tasks, like refilling a
prescription for themselves or one of their
dependents - all with a minimum of effort.

http://quickenhealth.intuit.com/
accessed 1/28/09

http://www.businesswire.com/portal/site/google/?ndmViewId=news_view&newsId=20070424005544&newsLang=en

http://findarticles.com/p/articles/mi_m0EIN/is_2008_April_10/ai_n25147119

Accessible IT means
people with disabilities are
• not dependent on others to get things done
• able to perform activities of daily living
– shop, pay bills, answer health questions
• able to socialize
– share their problems/solutions
– interact with people (family, providers, friends)
• able to learn online
• able to be employed
– ICT job requirements

http://www.w3.org/WAI/EO/Drafts/PWD-Use-Web/ Consumer Health Informatics
BMI520 winter 2009

http://www.cognitopia.com/index.html

http://www.ablelinktech.com/_desktop/webtrekconnect.asp

http://www.govtrack.us/congress/bill.xpd?bill=h110-1368

References
• Kaelber DC et al. A research agenda for
personal health records. DOI:
10.1197/JAMIA.M2547. August 28, 2008.
• Boyle CA et al. Prevalence and health impact of
developmental disabilities in US children.
Pediatrics 93(3): 399-403. 1994.
• Msall ME et al. Functional disability and school
activity limitations in 41,300 school-age children:
relationship to medical impairments. Pediatrics
111(3): 548-53. 2003.

Personal Health Record for individual with cerebral palsy

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