Title

Electronic personal health records: Opportunities and costs

Description of problem

Personal health records (PHRs) are records about a patient's health that the patient is in charge of. Patients and their relatives sometimes maintain these for administrative convenience, or out of frustration at the performance of clinical teams (Abbott et al 2001). Electronic PHRs are a new technology, possible because of mass access to the Internet by patients, and were initially maintained entirely by the patient or the patient's relatives (Tang 2006, Pagliari 2007). With mass computerization of clinicians' medical records, clinicians' data can be shared with patients over the Internet, and perhaps more significantly, patients can contribute data back to clinicians. 2008 was a watershed year as Google and Microsoft both released PHR platforms that exchange data with clinicians' electronic medical records systems (EMRs).

Research Question:

What are the opportunities and costs for patients, providers and payers of PHRs that support bi-directional data exchange with EHRs?

Methodology

Primary research:

• in-depth interviews with PHR innovators, including entrepreneurs, patients, providers and payers. These are made available through podcast: http://podcast.patientsknowbest.com/
• collect quantitative data about the costs of medical care through different scenarios, e.g. the time costs of physicians using PHRs with patients to provide preventative care vs. the financial costs of emergency admissions that were not prevented

Secondary research:

• literature review of existing efforts around the world, and listing these finding on a wiki: http://wiki.patientsknowbest.com/Personal_health_records_for_researchers

Purpose / perceived value

PHRs are the next Lutheran revolution: patients begin to read the medical notes and decipher clinicians' latin-laced phrases just as Luther advocated for the laity to read the Bible through translations from the Latin texts. Deployment signals a shift in power from paternalistic medicine to participatory medicine. This conflict underlies much of the misinformation and misperceptions around the PHR industry.
The purpose of this thesis is to provide as much clear-headed documentation as possible to guide the discussion as patients, providers and payers decide what to do with PHRs.

Bibliography

Abbott, S, Johnson, L & Lewis, H 2001, ‘Participation in Arranging Continuing Health Care Packages: Experiences and Aspirations of Service Users’, Journal of Nursing Management, vol. 9, pp. 79-85.

Pagliari, C, Detmer, D & Singleton, P 2007, ‘Potential of electronic personal health records’, British Medical Journal, vol. 335, pp. 330-333.

Tang, PC, Ash, JS, Bates, DW, Overhage, JM & Sands, DZ 2006, ‘Personal health records: definitions, benefits, and strategies for overcoming barriers to adoption’, Journal of the American Medical Informatics Association, vol. 13, pp. 121-126.