Are e-patients expert in their own diseases?

As an e-Doctor, one with some IT literacy, I welcome the e-Patient movement.

I think patients should be equipped, enabled, empowered, engaged, equals, and emancipated, as Wikipedia explains. The link also adds “and experts” and here I have a problem, not because I don’t think patients should have access to knowledge or know a lot about their own disease, but because knowing one pattern of pathology, i.e. your own, does not make you an expert.

No more than, for example, a petty thief can call himself a criminologist. An advocate, yes, certainly, but “expert” has the connotation of knowing everything there is to know about something. There may be expert patients out there, but I believe that denotation demands explanation, and e-Patient advocates and their blogs need to make sure that their information carries disclaimers that they do not have medical training or qualifications, and that the contents thereof are opinions, not medical advice. What makes someone an expert patient? I am an expert in sinus surgery, because I do the surgery so often. I have also had the surgery myself, so I know what it feels like. So I could be both.

My training took me twelve years of dedicated study, and another ten years of experience. I base my decisions on the thousands of patients I have seen, with the collective knowledge of my training, continuing professional education, and experience. For the common conditions in my field, I have seen the whole range of patient experience, from near disaster to an easy cruise. I’m regularly surprised by diseases that present differently to the lists of symptoms in the textbooks, that respond unexpectedly well to treatments, or do not when there is little reason why they should not. More than once I have “written off” patients as doomed to die, only to see them well and healthy years later, none of it due to anything I have done. As an “expert” I am surprised by how often I am wrong.

The longer I work as a doctor, the more I realize how little I know about why some patients do well and others not. I have learned not to prognosticate unless I really have to, or to be prescriptive or dogmatic in any sense, because there is a good chance I may be wrong.

So, to see e-Patients advocating certain treatments above others, saying “Do this and not that” based on their experience of one, is very unsettling. I am medicolegally liable for the advice I give. I don’t believe e-Patients should dispense medical advice without being equally liable for it. It is a dangerous and counterproductive measure to ascribe success in overcoming serious disease against the odds to anything other than statistical probability. Because the guys who don’t do well cannot be there to offer their perspective.

Sure, having good and dedicated doctors helps, and access to new treatments, involvement in clinical trials etc. may make a big difference. But that is no hope to the sufferer who is not winning the battle, or his/her family. The survivor’s views have a very real bias that may not be helpful to others with a disease.

For the same reason, anecdotal case reports in medical journals are useful in describing the wider spectrum of disease experience, but cannot be used to modify accepted treatments. For that, we need properly done clinical trials involving hundreds or thousands of patients. e-Patients, for all their enthusiasm, may not know this.

On the other hand, the establishment of support groups, websites, educational forums that facilitate, share symptoms, and share experiences without necessarily offering advice are all great initiatives. I welcome them.

The success of the e-Patient movement will depend on partnering with doctors, preferably e-Doctors, and developing systems around technology that benefit both parties and enhance medical care.

The true potential of the e-Patient movement is to set a new standard of care for medical practice. No longer is medical information privileged. Doctors need to beware for this reason – our standards of care have to meet the expectations of the educated, empowered and engaged patient. We need to become e-Doctors.

An e-Patient will always need an e-Doctor. We may not know as much about the nitty-gritty’s of your particular complaint, and will not feel it as you do, but our experience must count for something. The same can be said for our availability.

After all, Google does not do ER visits.