If you’re ever diagnosed with a chronic condition – diabetes, for instance, or Crohn’s disease – you’llÂ probably learn more than you ever thought possible about your disease and how to manage it. You might even become almost as knowledgeable as your doctor.
Is there such a thing as an expert patient? I know people whose diagnosis motivated them to read everythingÂ they could lay their hands on about their condition.Â They’re active participants in their health care. They avidly follow the latest research.Â Some of them have their own website and/or blog.
It’s hard to argue with the level of knowledgeÂ these patients command. After all, theyÂ often invest far more time and energy in learning all there is to know about theirÂ condition – or, in some cases, their child’s conditionÂ - than can a busy physician with hundreds of other patients.
Judging from a guest post this week at Kevin MD, though, the medical world is rather ambivalent about the whole concept of expert patients. Dr. Martin Young writes that he has a problem with it – “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.”
So what does make an expert? The word “expert” suggests “knowing everything there is to know about something,” Dr. Young writes.
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.
It seems we don’t quite have a common definition of what constitutes patient expertise. Physicians tend to equate it with the knowhow that’s conferred by medical training and years of practice. But for patients, being expert often has much more to do with the physical and emotional terrain of living daily with a chronic or long-term health condition. From these people’s perspective, the expert patient is one who’s not only knowledgeable about his or her condition but alsoÂ is highly competent at managing it. A broader definition might include knowing how to find the right resources and how to effectively navigate the health care system.
A similar discussionÂ has beenÂ taking place in Great Britain, where the National Health Service offers an Expert Patients Programme whose goal is to educate people with chronic, long-term conditions and enable them to participate in their care. When the British Medical Journal published an opinion piece pondering whether the expert patient concept wasÂ good or bad,Â responses fell into two camps.
Patient expertise is welcome, as long as patients understand the limits of their knowledge, wrote one person:
Searching the internet or going through several medical magazines by the patient can never replace the comprehensive understanding of the subject by a doctor. The patient may find out a lot about his/her medical problem and may make suggestions about how to treat it but the doctor is the one who is aware of all the different aspects involved, be it the interactions of different drugs with each other or the suitability of a specific patient to undergo any of the several treatment options available.
It’s hard enough for health care professionals, letÂ alone the average layperson,Â to keep up with all the latest knowledge, someone else wrote. “Would a patient be so expert to unravel all these issues in order to autonomously decide the best for his/her health?” he wrote.
The patients who responded, however, took a slightly different view of their role. One woman who participated in the Expert Patients Programme expressed dismay that it might have relegated her “to the ‘heart-sink’ category” with some physicians. “We were a mixed group of all ages and various conditions, but, without exception, all of us wanted to learn to manage our conditions better and to establish good therapeutic partnerships with those trying to help us,” she explains.
Another patient was emphatic that she’s not trying to replace the expertise of a doctor:
I think it must be infuriating for someone who has spent many years in medical training, and even more gaining experience, to find that an untrained patient has notions of how they want to be treated! But if someone came to me in my own professional field and told me of new research that I hadn’t yet encountered, I hope – I do hope – I would be able to accept that they had the time and motivation to find out things I didn’t know, and I hope – I do hope – I would be able to assess this new information impartially, without feeling that my expertise was being threatened.
The debate over expert patients seems to be about multiple issues. On one level, it’s about the terminology that should be used to describe people who are knowledgeable, motivated and participatory in their care. Is “expert” the right word? Maybe it’s not quite accurate, or maybe it’s too strong a word.Â On the other hand,Â it’s worth keeping in mind that the expression is “expertÂ patient,” not “expert co-physician.”
But on another level, the discussion is about whether it’s even possible for patients to be experts. If it is indeed possible for a patient to be an expert, to what extent should this expertise be allowed to help shape his or her care?
Knowledge is power, and the increasing availability of medical information for the laypersonÂ is alteringÂ the balance of power between doctors and patients in ways that are dynamic, unaccustomed and frequently uncomfortable. The discussion about expert patients reveals one of the fault lines along which this shift is taking place. There’s sure to beÂ more upheaval and disagreement before the groundÂ starts to settle.
Photo: Wikimedia Commons