I am very enthusiastic about the idea of having patients, particularly those with chronic diseases such as cancer, document their symptoms in electronic diaries. These patient-generated notes are then available for later review by their caregivers. I discussed this as a possible feature of personal health records (PHRs) in a previous note (see: The Personal Health Record as a Potential Web Publication Tool). Now comes further evidence of the value of this approach to healthcare (see: Cancer Patients Gain From Reporting Symptoms Online. Below is an excerpt from the article with boldface emphasis mine:
Having cancer patients report to doctors on their symptoms and side effects online may improve their care, a new study finds. Even the sickest cancer patients are willing and capable of reporting their symptoms online, says a team from Memorial Sloan-Kettering Cancer Center in New York City....The study included 107 lung cancer patients receiving outpatient chemotherapy who had access to a secure Internet patient reporting system....The patients were able to access the Symptom Tracking and Reporting (STAR) site using computers in waiting room kiosks and at home to report cancer symptoms and chemotherapy-related side effects....All of the patients used the waiting room kiosks at some or all of their office visits, and an average of 78 percent logged onto the system at any given office visit. Patients were more likely to use STAR if they had prior computer experience. The study found that 98 percent of patients found STAR easy to use, 90 percent said it was useful, and 77 percent believed it improved the quality of their discussions with clinicians.
(Patient Online Self-Reporting of Toxicity Symptoms During Chemotherapy).
Patients used the secure web-based Memorial Sloan-Kettering Cancer Center STAR site "to report their cancer- and chemotherapy-related side effects, including pain, fatigue, constipation, diarrhea, nausea, vomiting, shortness of breath, and decreased mobility, as well as their overall quality of life." Very valuable information indeed that may not be readily available in physician and nursing notes.
I have referred in past notes to two clinical information domains: the hospital EMR and the physician office/clinic domain. One of the challenges in healthcare IT has been, and will continue to be, the integration of these two disparate domains in order to create a longitudinal care record for continuity-of-care. Lab outreach programs can form an important bridge between these two domains because lab test results are copied to clinical systems in both domains.
Although I don't have detailed knowledge about the STAR site, I suspect that such a web-based system should allow easy integration with the hospital EMR. All that is necessary is to provide the URL for the patient-generated notes in the "formal" record system. The notion of patients generating part of their medical record has great appeal to me. I suspect that these patient notes can frequently serve to correct some of the errors that creep into records generated only by healthcare professionals.