In my clinic population, the patients want to be respected and kept informed, but they come to the doctor for expert opinion and interpretation of technical gobblety-goo. They are not the patients who arrive with reams of internet printouts or who have conducted their own literature review. I do not want to in any way imply anything negative because my patients are Heroes. They simply expect me to do my job. On the other hand, like anyone, if they have a test or procedure they want to know the results in a timely fashion as Dr Campbell has previously blogged. Occasionally, shared decision-making, which is very fashionable, is also a source of confusion. “What do you mean what do I want to do? You are the doctor. What do you recommend?” It reminds me a bit of Bessie. Bessie is my car and she has over 130,000 miles. Obviously out of warranty, I take her to an independent garage run by most excellent mechanics. They are so respectful of me and my car that they often want to give me every single detail of the diagnosis and treatment. I just as often feel my eyes rolling. No one in my family is particularly mechanically inclined and if it doesn’t involve jump starting I am unlikely going to understand it or be able to fix it. Just as my car expertise may not be representative of the general population, my clinic population is not the same as everyone’s either. I tend to see older patients with lower incomes. Access to raw data such as laboratory results or to technical documents such as physician notes are not one size fits all situations. For every person that feels empowered with immediate information, there may be someone needlessly panicking because their chloride is just out of range.
In my practice setting, we have a mandate to provide written or oral result information to patients within 14 days of the result being available and we are audited on our performance. Rather than send raw test results, most providers send a letter with a summary and interpretation and recommended follow-up (which could be watchful waiting). However, through an online portal there will soon be increased access to raw data and the opportunity to contact providers via recently established online secure messaging system which also has a mandated and monitored response time (3 business days).
All that said, I tend to be a late adopter (e.g. I may have been that last user of the StarTac phone) because I like to see the data from rigorous investigation. (Yes, I am a data potato.) The current issue of the Annals of Internal Medicine caught my eye with the article “Inviting Patients to Read Their Doctors’ Notes: A Quasi-experimental Study and a Look Ahead” and accompanying commentaries. In the study, which took place at three large primary care practices, physician notes were made available to patients through a secure online portal and then several study endpoints such as patient use of secure messaging and patient and physician pre and post intervention assessments of the open note intervention by surveys. My own misgivings were not supported by this study because the patients were more satisfied, felt more in control, and were rarely confused or offended by the notes. In addition, the physician’s work load and work flow were only modestly impacted. Of course, notes should include some interpretation and are not the same as raw laboratory data provided without any context or explanation. Also, the physicians and the patients self-selected to participate in the study and to return the follow-up survey (with a patient response rate of 41%). Therefore, it is possible that physicians who were better documenters and communicators were the ones more likely to participate. Certainly the investigators found that participating physicians were more positive about the intervention than non-participating physicians in the pre-intervention survey. By the same token, patients who were in need of immediate information and who were more likely to view it positively may have been more likely to both participate in the study and to return the survey.
On the other hand, patients who do not want this information are not forced to access it. As one commentary author noted, only 30%-50% of patients sign up for online portals to receive medical information. This relatively low participation rate may reflect access to the internet, comfort with use of such a portal, and/or desire for the information in that format. In addition, we don’t know yet if such wide spread access, which comes at considerable cost for infrastructure to initiate and maintain the secure messaging systems, physician time for training and use, and administration time for monitoring, actually produces better patient outcomes (e.g. better blood pressure or diabetes control, fewer hospitalizations or emergency department/urgent care visits, lower rates of complications of chronic diseases) by increasing patient understanding, increasing adherence to physician recommendations, or greater ownership of responsibility for their own health. If better outcomes are achieved then the costs would be worthwhile.
This entry is a guest blog by Deborah Fisher, MD, MHS, The extra letters after the MD indicate that she spent time getting yet another degree (in clinical research). She is a gastroenterologist and outcomes researcher at the Durham Veterans Affairs Medical Center and an Associate Professor of Medicine at Duke University. She is married to the President and CEO of KROC Consulting, LLC and carries the empty title of Vice President. On the other hand, she is the my wife and the benevolent dictator of the Campbell household. The blog represents her views and not those of the Federal Government or Duke University.