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:
The MyHealthOutcomes 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 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 12:49
Last updated: March 08, 2010 17:06