Personal Health Record Startup

Health-related quality-of-life instruments are basically questionnaires that have been developed and validated against other standard clinical measures so that they report how patients are doing with high specificity, sensitivity, and predictive value. These measures can then be used to follow patients routinely instead of using more expensive, invasive, and dangerous tests — holding such tests in reserve when changes in clinical status indicate they’re needed.

The main obstacle to routine deployment of these instruments is the logistical complexity and expense of getting the questionnaires to and from the patients, processing the patient responses into the calculated scores needed for interpretation, and storing and analyzing the accumulating data. Ordinarily all this is handled by paper forms — so it is not done at all. Moving the entire process onto the web is an obvious solution, at least for patients with access to the web.

John Spertus, MD MPH at the Mid-America Heart Institute has developed the premier health-related quality-of-life measures used in cardiology: the Seattle Angina Questionnaire (SAQ), the Kansas City Cardiomyopathy Questionnaire (KCCQ), and the Peripheral Artery Questionnaire (PAQ). Arising from our joint work with the Cardiovascular Outcomes Research Consortium, we decided to create a consumer-facing web site that would allow heart patients to track their own status using John’s instruments, along with a small set of additional clinical data that are most needed when patients see their doctors.

The specific needs for this project included:

  • User-friendly forms for each of John’s instruments that make it easy for patients to fill in the questionnaires, confirm their responses, and then save them.
  • Support for the many languages into which John’s instruments have been translated.
  • Tools to track serial responses for patients that determine when any significant changes have occurred.
  • Intuitive graphing of serial results, including concise one-page summaries for printing to take to a clinical appointment.
  • Tools to allow patients to record their current medication lists and other treatments.
  • Tools to allow patients to record questions and comments that they want to address with their doctors during their next visit.
  • Systems to allow patients to grant online access by their providers to their data if the provider wants such access.
  • The MyHealthOutcomes (MHO) web site is the result of our efforts. It is built on the basic Epimetrics Epicenter platform that has been significantly enhanced through packages that implement the SAQ, KCCQ, and PAQ.

    • The questionnaire forms and language selection can be tested out in the demos area at MHO.

    • We use the Google Charts API to generate the line and bar charts that display patient information.

    • We created new systems to handle medications, treatments, and provider relations.

    • A reminder system lets patients know when they’re due for another set of measures.

    • Patients can manage their own profile and control whether their provider can access their information.
    • The MHO site is still in beta testing, but preliminary responses have been highly encouraging. Certainly the Epimetrics Epicenter platform made the site feasible to create in a robust fashion.

Created: September 15, 2009 19:49
Last updated: July 06, 2022 00:07


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