In order to take command of your health, you must have access to information. Fortunately, the availability of information has been greatly enhanced by the advent of the Internet. In fact, many people attribute the existence of the modern e-patient to the Internet. Not only is information more available, but through social networking, other individuals with similar interests are more available. The vast array of communities of patients who share links and information online through e-mail, blogs, bulletin boards and other methods attests to this fact. But, are we being overwhelmed?
Many of us who use the Internet on a regular basis as part of our work, so-called knowledge workers, say “yes”. Clearly there is a down side to this seemingly unlimited data coming at us through multiple modes. In one study on the topic, the authors point out that ” beyond an optimum, more multitasking is associated with declining project completion rates and revenue”. Although the problem seems to get more attention in other business, there is growning awareness that it’s a problem in health care as well. With these sorts of studies proliferating, it’s not surprising that Google, Microsoft, Intel and others have formed a nonprofit organization specifically to study the impact of information overload on employees. Called the Information Overload Research Group, or IORG, it got me thinking about how information overload and using multiple modes of communication simultaneously might impact e-patients and participatory medicine
I’d like to propose that information overload is not only NO detriment to e-Patients, it is a driving force behind the e-Patient movement. Moreover, I’ll go out on a limb and suggest that when we providers worry about our patients suffering from information overload, our worries are paternalistic and ultimately, not in our best interests. Here’s my reasoning. As health care providers, we try to attend to each of our patients as individuals, but are doing so in the context of a vast and growing stream of “evidence”, mostly based on populations and probabilities. We worry about information overload because we are the ones sufering from it. On the other hand, our e-Patients don’t have an unlimited number of health concerns, and can maintain focus on their own issues in a way that we can not. They network with each other, filter and prioritize information about their condition and it’s impact on them. They keep a watchful eye out for new developments and will usually see them before we do. All this, because their motivation is, put bluntly, much more focused on their health than ours can be. For these reasons, e-Patients are changing the doctors role, as has been discussed on this blog in detail. We should be working with them as partners or coaches, not as all-knowing experts. Although this won’t solve all our information overload problems, it’s a step in the right direction.
Dan, this is powerful stuff. Are there any limits to your role as coach? Times when you need to step in the game and take over the decision-making? In my research, both qualitative & quantitative, I see data that pulls in both directions — toward complete empowerment of the individual AND toward continued empowerment of health professionals.
Josh Seidman has talked about the need to “titrate the dosage” of information, just as doctors need to titrate a drug dosage. He has posted a response to this post on his blog, by the way.
I think the limits of the role are the same as any coach. At one end of the spectrum, the clinician puts their judgment, experience and objectivity at the patient’s disposal but does not impose it. At the other end, the clinician needs to know how hard to push. Some of my own patients are clearly not interested in taking an active role in their care. As a good coach I can only push so hard. In the case of information this means the clinician should not hold all patients to the same standard of engagement. This is where Josh Seidman’s point about dosing is relevant (the link to his blog entry is in Susannah’s comment). I can’t expect all my patients to know more about current advances in neurology than I do (although some clearly do).
To expand on the role a bit, when I was discussing this idea of clinician as coach with some medical informatics professionals just after posting my blog entry, one of them opined that another function of the clinician is supplying context. I like this idea as well. It’s a way of harnessing the experience and objectivity of the clinician. There have always been (we all know some) clinicians who do not try to have an encyclopedic knowledge and yet are superb. They naturally emphasize their coaching abilities and bring context to the relationship. They are natural sounding boards, and context providers.
As an ACOR listowner, I see the occasional person for whom there is too much information – or, more often, the person for whom the reality of the list information is overwhelming at a time when she is emotionally fragile. However, once someone gets over that stage, I think there is no possibility of seeing too much information. We are empowering the e-patients, by giving them this access.
Dan’s point about e-patients having more or less one health concern and the ability to focus on it is well taken. I feel that the people on my lists are able to focus, to an amazing degree, on their own particular health issue(s). As a result of the desperate need to take control and find a solution, they will research and read every article they can find. I don’t think most physicians have the time to do this.
I think that speaks powerfully to the issue of virtually criminal abuse of physicians’ ability to treat patients in an appropriate manner. The seven-minute appointment, the pre-screening of reasons why you are there (by the assistant), the feeling that you, as a patient, are taking up too much time… I can’t imagine that this is the way most physicians wish to practice medicine. The very concept of needing an entire full-time person – or several – simply to handle insurance issues, is appalling to me. I absolutely agree this need is valid; I am appalled that doctors need this. Our system needs such a huge overhaul, so that doctors can give their patients the time they require.
But getting back to the issue at hand, of the patient who has read numerous articles and goes – prepared – to see the doctor, armed with information. Enter the issue of the hostile physician… “what medical school did YOU go to?” etc. – when someone brings in an article or information that the physician is not familiar with. What I find is true, is that people have an amazing ability to absorb information they theoretically shouldn’t be able to understand, when their lives are at stake.
I am probably a case in point: having avoided biology class completely at all periods of my life, I now find myself reading about cancer cell growth and division and the effects of various chemotherapy agents on them (from a biochemical point of view), and understanding what I am reading. Could I write a textbook on it? Certainly not. But I do understand what I am reading, and the implications of it.
As an example, I just attended the Ovarian Cancer National Alliance annual conference. I am on the board of directors of the organization, so I was also instrumental in organizing aspects of the conference. During this conference we heard speakers from the NIH, CDC, Department of Defense (regarding their cancer research), and many other researchers and physicians speaking about the science of ovarian cancer research and treatment. I can’t say I understood it at the level of the researchers, but I understood it.
By the way, this year we also had Susannah Fox as a speaker, at my suggestion. Of course she was fabulous.
I remember the first conference that OCNA put on – and several since – at which we had researchers discussing their work at a very high level and then every so often, someone who started out with “the ovary is about the size of an almond” and continuing on in such basic language that most of us were wincing. (Note that those speakers were not invited back…)
Anyhow, I think it is far from accurate to think that information overload is an issue for most serious e-patients. I’ve been one for 12 years, and seen such growth in the information available, and in the ease with which it can be found and accessed. I am profoundly grateful for the wealth of information that is now available, and I think that attitude is typical of the e-patients I know.
Great comments, and I couldn’t agree more that all of us have more understanding than we are credited. When I have an audience of e-Patients, it’s so much easier to make a presentation. On the other hand, I try NOT to talk down to any audience and instead try to respect and encourage questions.
Perhaps if the politicians and news media would stop treating us like unenlightened herds of sheep, we’d REALLY make progress.