In 1965, the Canadian Medical Association Journal published an article entitled “The Professional Patient,” an ironic piece about how best to handle the patient who, “by virtue of long study and diligent effort, has brought his attitude towards his status and his doctor to new heights of self-expression.” This is not a literal piece—it is satire, along the lines of Swift’s “Reasonable Proposal” that we solve hunger by eating children. It was understood, 40 years ago, that the following statement was so laughably, transparently untrue that it could only be read as sarcasm:
“Until a few years ago… only the doctor was professional. Shortly after the war it became clear that this relationship was going to change”
The very notion that patients could be professionals at being patients was oxymoronic, if not just plain moronic.
But that was then, and this is now, and the concept of a professional patient or professional caregiveris one whose time has come. We live in an era of increasing medical alienation, of shrinking consultation time, increasing limitations on physician autonomy (ever tried to get a drug approved that your doctor wrote but wasn’t on your insurance formulary?), and doctor-patient dialogues that are driven by billing codes. As a society, we have moved from a near-holy view of the sanctity of the doctor-patient relationship to doctors who practice “defensive medicine” so they don’t get sued, and to a culture that has embraced the minute clinic (whose slogan, “you’re sick, we’re quick” just about says it all when it comes to depth of the clinical relationship they expect you to create with them).
We are, as patients and caregivers of patients, suddenly, and quite literally, on our own. If I want to, say, ensure that my child with ADHD is receiving the best care possible, and has resources available to him that are proven to help in cases like his, it is my responsibility to make sure this happens. Gone are the days when Doc Jones delivered multiple generations of the same family; in my family, my three kids were delivered by 3 different doctors, in three different medical practices, working in two different states, 3 times zones apart. If anyone knew what was coming for baby number 3, it was us, not the doctor (ok, it was my wife. But I knew where to sit in the operating room, right next to the anesthesiologist.) When we get sick, if it’s something that doesn’t just cure itself, like a cold, we have to take care of ourselves. The more complex, the more impactful, the more debilitating the disease, the more we are forced to train ourselves to understand our diseases, and to know how to make decisions about how to treat them.
Fortunately, we have at our disposal the greatest repository of human knowledge since the Library at Alexandria, the Internet. And many of us use the Internet to find information about health. That’s not news, Dr. Google has been around since, well, since Google. Probably Yahoo. Maybe even Excite.
What is news is that we are increasingly turning to the Internet, not just to find information, but to get better at having our diseases, or caring for those with diseases. We are creating small, tightly connected groups of single-interest communities, focusing on improving our abilities in relation to these interests (say, managing diabetes, or being the child of a parent with Alzheimer’s disease.) These are most properly called communities of practice, and the role of these groups is to help us get better at handling our healthcare. Within the group, we can ask, and find answers to, questions like:
- What will it be like to live with one decision or another, not just in terms of percentage chances of positive or negative results but also what life will be like on a day-to-day basis
- What different physical or emotional states and symptoms mean
- What is the full range of options available, now and in the not-too-distant future
With this information, we become better at making informed decisions about when, how, and with what we or our loved ones are treated (if we or they choose to be treated at all).
What we are describing are not casual communities, and as a result many of us don’t belong to them—just asking a question in a chat room does not make us members of a community, or at least not a tightly focused one. But on any large website, message board, or usergroup, there are likely any number of communities of practice, each largely self-contained and defined by a specific interest or condition. Anyone going online to try to get better at being a patient or caregiver is starting down the path towards becoming a member of such a group; if you start engaging in ongoing discussions with others who are in the same position you are, if you find yourself knowing as much about these members’ situations as you do your own, and knowing what they are going through as they are going through it (waiting for test results, say, or experimenting with a new therapy), then you just may have joined a community of practice.
Going back to the idea that online healthcare communities of practice are training us to be professionalpatients, we have to understand the word professional to mean something other than “the opposite of amateur”, e.g., someone paid to do something (the difference between professional and amateur athletics.) In this case, we mean professional to stand for a member of a self selecting, self monitoring, self educating set of specialists, who through engagement with each other increase both their own knowledge and that of the group overall.
Think of the process of joining a community of practice as a kind of apprenticeship: You watch and listen at first, then begin to dabble, then finally grow until you reach a point of full membership, where in tackling your own situation you help the group as a whole.
From this point of view, when a member of a group of children of parents with Alzheimer’s disease crowd-sources the question “How do I take the keys from my father, who still thinks he can drive but who is a danger to himself and others?” they are asking a question that is of immediate interest to them, but of likely interest to everyone in the group, as well. In a community of practice, this query will likely spark a robust discussion that produces an array of possible solutions, meaning that everyone—not just the person asking the question—benefits.
What does this mean for those in the health-care industry looking to better connect with the modern patient, who is in many respects becoming that professional that was the object of plain ridicule by the Canadian Medical Association in 1965? Plenty. Health-care communications have become too comfortable with the idea that when we create materials, we have one of two audiences to work with: expert providers, who need technical and practice-based information, and lay patients, who need to be fed basic facts. In the emerging DIY health-care model, the patient is neither—they are not a health care provider, because they are only interested in their particular case, but nor are they looking for the basics (at least, not after the initial few searches on line). We as patients and caregivers are not just looking for information, we’re also looking for actionable advice, practical wisdom, tried-and-true clinical gems that mirror in some ways the kinds of learning interns and residents and nurses undergo in a hospital setting.
It’s time marketers stopped trying to inform patients, and started thinking about training them, since they’re already busy training themselves. Marketers can either lead or follow, as the saying goes; if they aren’t willing to do either, they should probably get out of the way.
Diagram of connected networks of users on the DiabetesHUB. The large circles at 11 and 8 o’clock likely form two online healthcare communities of practice.