The 800-pound gorilla at the center of health information transformation is the patient. This sleeping giant is slowly emerging from hibernation, and watch out when it wakes up. Folded into ARRA’s HITECH Act are provisions that require health care providers to “Provide patients and families with access to data, knowledge, and tools to make informed decisions and to manage their health.” If you are a caregiver, or manage a chronic disease, this policy will have a profound effect on you.
While my sister and brother battled terminal aggressive cancers, it was their caregiver who carried the pharmacological list of medications, nutritional supplements, allergies, adverse reactions, near fatal overdoses, sleep patterns, and vitals in a spiral-bound paper notebook. Between visits to oncologists, radiation oncologists, labs, and hospital rooms, the notebook became the hub of health information exchange. In 2006, my sister’s healthcare providers were part of a pilot site for health information exchange, but what had become “The Notebook” evolved into THE hard copy resource that her clinician’s relied on for subjective patient information. Even though each of the doctors could access her record electronically, they looked to the caregiver for the complete story, partly out of compassion, partly because they knew it was more complete than the picture they had, given the current state of health information exchange.
Content of your personal health record (PHRs) should include fields for the following: emergency contact information, payer information (subscriber, your relationship to the subscriber), name of primary care physician, allergies, medications (active and inactive), current medical history, current health concerns, family medical history, social habits such as drinking and smoking, surgeries. In a future posting, I’ll provide my list of favorite PHR companies, their cost, and what I like about them.