Personal Health Records: Past and Future Directions, In Two Acts

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Personal Health Records Past and Future
Directions,In Two Acts

• Clement J. McDonald, MD
• James J. Cimino, MD
• Lister Hill National Center for Biomedical
  Communications
• National Library of Medicine

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No Relevant Financial Relationships with
Commercial Interests
James J. Cimino, M.D.
Disclosures
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Learning Objectives Act I

1. An introduction to consumer access to health
   information, including their own personal health
   data
2. Familiarity with a sample of typical
   consumer-oriented health information sites
3. Demonstration of some of the early experiments
   with patient health records

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Motivators

• Patient self-help/self-care
• Patient autonomy
• Coordination of care
• Health insurance - patient as case manager

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What's New?

• Ability to interface with remote systems
• Common user environment
• Platform independence
• Internet culture
• Critical mass effect

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What Do Consumers Want?

• Access to health information
• Help in finding a caregiver
• Purchasing power
• Community
• Access for providers
• Access to their own records
• monitor
• understand
• contribute

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Mayo Clinic www.mayohealth.org
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Virtual Hospital www.vh.org
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HMO www.oxhp.com
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WebMD www.webmd.com
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NLM Gateway gateway.nlm.nih.gov/gw/Cmd
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MedlinePlus www.nlm.nih.gov/medlineplus
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Healthfinder www.healthfinder.gov
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CDC Preventive Guidelines www.cdc.gov
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Buy Cipro www.online-prescriptiondrugs.com/cipro
.shtml
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Issues

• Privacy and confidentiality
• Quality of health information (credentialing)

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Zapper www.drclark.net/disease/zapper.htm
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Health on the Net Code of Conduct (HONcode)

• Authority (authors)
• Complementarity (support, not replace)
• Privacy (respect personal data)
• Attribution (source of published information)
• Justifiability (back up claims)
• Transparency (of authorship)
• Financial disclosure (funding source)
• Advertising policy (distinguish ads from content)

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Health on the Netwww.hnot.ch
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Issues

• Privacy and confidentiality
• Quality of health information (credentialing)

• Understanding health information

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breast cancer survival
The 5-year overall survival, cause-specific
survival, local recurrence-free survival and
disease-free survival rates were 97.3, 98.4,
98.1, and 91.5, respectively.
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Issues

• Privacy and confidentiality
• Quality of health information (credentialing)
• Understanding health information

• Understanding their records
• Patient relations with care givers
• Have-nots
• Accuracy of data contributions

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Issues

• Privacy and confidentiality
• Quality of health information (credentialing)
• Understanding health information
• Understanding their records
• Patient relations with care givers
• Have-nots
• Accuracy of data contributions

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Some Examples of Past Systems

• Patient Centered Access to Secure to Secure
  Systems Online (PCASSO)
• Patient Clinical Information System (PatCIS)

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Some Examples of Past Systems

• Patient Centered Access to Secure to Secure
  Systems Online (PCASSO)
• Patient Clinical Information System (PatCIS)

• MyHealthAtVanderbilt

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MyHealthAtVanderbiltwww.myhealthatvanderbilt.com
/myhealth-portal/app
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Some Examples of Past Systems

• Patient Centered Access to Secure to Secure
  Systems Online (PCASSO)
• Patient Clinical Information System (PatCIS)
• MyHealthAtVanderbilt

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HealthVaultwww.healthvault.com
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Google Healthwww.google.com/health/p/
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Patient Portal Informatics Issues

• What are the patient information needs?
• How do patients understand?
• How do patients contribute?
• How do we evaluate the impact and value?