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

No Relevant Financial Relationships with Commercial Interests

James J. Cimino, M.D.

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

Motivators

• Patient self-help/self-care

• Patient autonomy

• Coordination of care

• Health insurance - patient as case manager

What's New?

• Ability to interface with remote systems

• Common user environment

• Platform independence

• Internet culture

• Critical mass effect

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

Mayo Clinic: www.mayohealth.org

Virtual Hospital: www.vh.org

HMO: www.oxhp.com

WebMD: www.webmd.com

NLM Gateway: gateway.nlm.nih.gov/gw/Cmd

MedlinePlus: www.nlm.nih.gov/medlineplus

Healthfinder: www.healthfinder.gov

CDC Preventive Guidelines: www.cdc.gov

Buy Cipro: www.online-prescriptiondrugs.com/cipro.shtml

Issues

• Privacy and confidentiality

• Quality of health information (credentialing)

Zapper: www.drclark.net/disease/zapper.htm

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)

Health on the Net:www.hnot.ch

Issues

• Understanding health information

• Privacy and confidentiality

• Quality of health information (credentialing)

The 5-year overall survival, cause-specific survival, localrecurrence-free survival and disease-free survival rateswere 97.3%, 98.4%, 98.1%, and 91.5%, respectively.

breast cancer survival

Issues

• Understanding their records

• Patient relations with care givers

• Have-nots

• Accuracy of data contributions

• Privacy and confidentiality

• Quality of health information (credentialing)

• Understanding health information

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

Some Examples of Past Systems

• Patient Centered Access to Secure to Secure Systems Online (PCASSO)

• Patient Clinical Information System (PatCIS)

Some Examples of Past Systems

• Patient Centered Access to Secure to Secure Systems Online (PCASSO)

• Patient Clinical Information System (PatCIS)

• MyHealthAtVanderbilt

MyHealthAtVanderbilt:www.myhealthatvanderbilt.com/myhealth-portal/app

Some Examples of Past Systems

• Patient Centered Access to Secure to Secure Systems Online (PCASSO)

• Patient Clinical Information System (PatCIS)

• MyHealthAtVanderbilt

HealthVault:www.healthvault.com

Google Health:www.google.com/health/p/

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?