Open the portal, but try not to drown
Patients are getting more and more opportunities to be directly involved in their healthcare and medical decision-making to a degree few could anticipate even a decade ago. Robust patient portals are part of EHR’s in all hospitals and medical practices, although utilization has been spotty so far. Nationwide there is an increasing move to Open Notes and with the rarest of exceptions all notes we write are available for patients to review immediately. Patient satisfaction scores are now paramount in evaluations of medical care quality, and advanced quality programs include patients as part of the multidisciplinary team that evaluates medical care. This is all good and long overdue. However, we need to make significant adjustments in some of our medical care delivery processes.
The most obvious change is the construction of progress notes. In the past, they were methods of inter-professional communication where providers could document the subtlety and uncertainty of illness. The social, behavioral, and emotional responses to disease make every illness different and astute clinicians could document these important items because only colleagues and other medical care providers read those notes. The intended audience for progress notes is now just as much the patient (and family) as other providers. We now see new progress notes with fewer concerns being addressed about the patient’s psychosocial response to illness, the patient’s motivation and follow-through, and the accuracy and veracity of the history obtained. Similarly, in an age where so many people are quick to undertake a fast and compulsive Google search for information about any diagnosis or drug available, differential diagnoses need to be listed cautiously. This is especially true when we may be considering more serious and devastating illnesses well before there is enough substantive evidence to consider them likely diagnoses. Important observations about issues from anxiety to motivation to compliance to drug seeking behavior to demeanor now can be represented very differently in the patient record when you know the person who is filling in your patient satisfaction score is now an online subscriber to your writings. Is that all good or all bad? Probably neither but an important change that requires the medical care providers who view the medical record to appreciate that there are gaps in characterization that they need to recognize and fill in on their own.
Another other big change is the near immediate release of results to patients. This can vary from the routine to “normal but frightening” (especially with the worried well) to dramatic test results findings that reach patients before we can review and act.
This last issue came home to me when I received an urgent call from a grammar school friend of mine, Steve, who lives on the West Coast and wanted to talk to me about some disturbing test results he just received. He emailed a copy of his coronary CTA report evening and it was frightening to him with descriptions including “heavy calcification” and multiple stenoses in his coronary arteries. I was able to help him understand the report and to interpret the terms a little better than his own first attempt. He was then able to go to sleep that night without thinking he might not wake up in the morning, which was his first impression after reading this report. By the next day one of his doctors had contacted him to accelerate his appointment and arrange for further testing. But the first day crisis was averted by using his available back channels to get an answer only after he had a chance to panic and worry. Spoiler alert – his subsequent angiogram showed no significant obstructive disease and no intervention needed.
What was very different from any similar discussions I have had with patients, friends or relatives in the past was that I was the first physician other than the radiologist to know about these results – and I was not even involved in his care! Steve had told me that he had had the test done the same day he called me, shortly before our phone call. The CT report was available on his portal by the time he got home from the scan. As a disclaimer, traffic is pretty bad where he lives, so it took him about an hour to get home. The good news is that these reports are being done and sent out very timely (at least where he lives), but this scenario will be repeated often as patients see test results as soon as their providers do, or in cases like this, well before the ordering doctors even have a chance to see them.
This has several implications for medical care and testing, most of which are good. First, we need to continue to be judicious and only order tests wisely, focusing on value and avoiding the urge to order excessive testing and consultations. The more testing that we order, the more such circumstances will arise and we want to avoid the double whammy of a self-inflicted wound, i.e. treating the anxiety about test results that never should have been ordered in the first place.
Secondly, we have to be thorough, prompt, and proactive with all results. Previously there was a cushion of time to address most results and reports. Many abnormalities on reports are actually normal or stable and unchanged or of little to no clinical significance. They could wait until the next time we saw the patient to review them since there was no medical care required other than confirmation of non-acuity. Likewise, when results did require action there were many ways to review and follow-up on test results without triggering premature unfocused anxiety. Now we need to every test and every result quickly and carefully, with appropriate plans in place to address the results.
This is still a significant net benefit because patient review provides a nonprofessional “second review” that makes it less likely that a potentially important conclusion is overlooked or not addressed in a timely fashion. In addition, for the many normal test results that patients now can review, their anxiety about serious abnormalities being present can be very quickly resolved when they can see clearly normal results.
Thirdly, this is expensive and will introduce subtle but significant expense into our system. Provider time and staff time will have to be committed to mailings, phone calls, visits, emails, portal messages, and other interventions needed to address these findings. These are not small issues and with staffing at a premium, margins being stretched, EHR’s consuming way too much of our day, and personnel costs increasing, this will put tremendous pressure on hospital systems and medical office practices.
From the patient perspective all of these developments are mostly positive (with a few exceptions), but we as providers need to be facile, aware of the implications, adjust our practices quickly, and work through these issues to make sure that we take advantage of these changes and do not let them drown us in frustration.
