Personal Health Record for individual with cerebral palsy


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Considerations in constructing and evaluating a PHR for individual with CP or neurodevelopmental difficulty. Part of coursework for OHSU certificate in Medical Informatics, March 2009.

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Personal Health Record for individual with cerebral palsy

  1. 1. Personal Health Record: developmental disabilities Vincent P. Gibbons, M.D. Albany Medical College and OHSU DMICE BMI 520 Consumer Health Informatics
  2. 2. 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?
  3. 3. 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).
  4. 4. • 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.
  5. 5. 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.
  6. 6. 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.
  7. 7. 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.
  8. 8. CP comorbidities behavior orthopedic problems problems sensory cerebral palsy problems vision mental retardation, hearing learning problems touch epilepsy
  9. 9. 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
  10. 10. 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
  11. 11. Appleyard RJ in OHSU Consumer Health Informatics BMI520 winter 2009
  12. 12. Inverse information law “…access to appropriate information is particularly difficult for those who need it most.” Gunther Eysenbach (BMJ, 2000) Appleyard RJ in OHSU Consumer Health Informatics BMI520 winter 2009
  13. 13. 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 Consumer Health Informatics BMI520 winter 2009
  14. 14. 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 Appleyard RJ in OHSU Consumer Health Informatics BMI520 winter 2009
  15. 15. 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.
  16. 16. 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.
  17. 17. 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
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  20. 20. 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 winter 2009
  21. 21. Industry self-regulation • Health on the Net Foundation (HON) • TRUSTe • Internet Healthcare Coalition • Health Internet Ethics Coalition OHSU Consumer Health Informatics BMI520 winter 2009
  22. 22. 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
  23. 23. OHSU Consumer Health Informatics BMI520 winter 2009
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  26. 26. 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
  27. 27. 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
  28. 28. 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.
  29. 29. accessed 1/28/09
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  32. 32. 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 Appleyard RJ in OHSU Consumer Health Informatics BMI520 winter 2009
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  36. 36. 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.