Doctors and Patients Sharing Information: A Two-Way Street

Summary: Today, many argue that the traditional relationship between doctor and patient is changing. At one time, the doctor had the information, the patient listened. But today, as more and more patients trawl the Web, researching their own illness, some are bringing valuable information to their doctors. New websites also offer guides to finding “Credible, Reliable, Objective, Health Information on the Internet” as well as tips on “How to Share Information With Your Doctor” efficiently and tactfully. This is all part of the shift toward “shared decision-making.” Rather than passively giving “informed consent” more patients are making an “informed choice” when they agree to a course of treatment.

Of course, not every patient can—or wants to—become his doctor’s partner. Not everyone possesses the skills needed to surf the web and thread his way through a maze of medical information.  Moreover, many patients (including this one) would rather leave the research to a doctor who keeps up with the latest medical evidence by collaborating and consulting with other physicians.

But even in those cases, the patient possesses knowledge that no doctor can have: an intuitive understanding of her own body, her own desires, priorities and deepest fears. This is the information she must share with her doctor when deciding on a course of treatment.  The key to being an “empowered patient” is being true to yourself.

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When “e-patient Dave” (a.k.a. Dave deBronkart) was diagnosed with cancer, he was told that he had 5.5 months to live. Dave decided to fight, turning to the Web and on-line support communities for help, and now he has written a book revealing how a brave and savvy patient can partner with his doctor. Laugh, Sing, and Eat Like a Pig tells the story of how the Internet can empower an individual to become part of health care reform.  (Thanks to Matthew Holt, of The Healthcare Blog, for commenting on and calling my attention to the book.)

E-patient Dave’s website also offers commentary from health care reformers, including Paul Levy, President and CEO of Beth Israel Deaconess Medical Center, where Dave was treated for stage IV renal cancer. Levy explains how Dave’s story signals a change in the doctor-patient relationship:

“The standard view of the medical profession with regard to patient involvement in managing their illness is that ‘an informed patient will be more compliant with the regimens we say are necessary.’  In other words, the information goes in one direction: We are the experts. We’ll answer your questions. But we are the experts.

“I suppose we could spend a long time discussing the sociological reasons for this view,” Levy continues. “Medical people have always been highly revered in society. They go through intense technical training and have a broad scientific understanding of the human body and its diseases. They are trained, too, to be decisive, using the evidence at hand to make clinical decisions in real time. They are told that part of their job is to not make mistakes and that they have ultimate responsibility for the welfare of their patients.

"Given this background, how would we ever expect a doctor to expect that a patient has something to offer in determining the path for clinical treatment of a complex disease like cancer, or even simpler medical problems?

“But the truth is that the patients can bring a lot to the party. Let’s explore why. First, an MD’s knowledge of any given disease is incomplete. With the rapid pace of medical discovery, it is virtually impossible for a doctor to be up to date with everything going on. Second, we need to admit that doctors generally do not practice evidence-based medicine. Experts like Intermountain Health’s Brent James have pointed out the high degree in variability with which virtually identical patients are treated.  He uses terms like ‘regional medical mythology’ in describing this lack of standardization.

“But there is another factor to consider as well. Even if doctors can keep up with the latest scientific information and even if they assiduously try to apply it, the degree of variability among patients themselves makes it difficult to assume that the general statistics apply to the particular case. [For example, when he was diagnosed Dave was told that he had “5.5 months” to live.] Any probability distribution is, in fact, a distribution with tails (aka “outliers.”) One that is based on a relatively small number of cases is particularly subject to wide standard deviations. One that is based on emerging treatment technologies and approaches is even more subject to a lack of specificity. In short, a problem in medicine is that a statistic often gives the impression of precision when precision is lacking.

“In this situation, there is another source of information for the doctor, someone who has an intense vested interest in success – the patient. Now, let’s admit that Dave was an outlier himself when it came to patient involvement. He is computer savvy and was indefatigable (yes, even with cancer) in searching out the latest about everything.

“But, as I have talked with dozens of other patients, it is apparent that they spend a lot of time exploring the web, participating in support groups, and talking with friends and families about their medical situations. When I have talked with doctors here, they are replete with stories about how a patient has helped them resolve difficult treatment decisions. Sometimes this happens because of technical information provided by patients. Often, though, it is because the patient has 'inside' information about his or her own body that puts the doctor’s technical knowledge into a more immediate and precise context.

“Dave’s [most] important story is how doctors and a patient working in partnership can learn from one another. His plan is to shift the balance of power in clinical settings into a true balance of power, one based on mutual knowledge, respect, and empathy.”

    A Few Caveats 

I agree with everything that Levy says. But his advice doesn’t apply to everyone. Not all patients are able to—or want to—become partners in their own care.

First, “e-patient Steve” is better-educated, more computer literate, and younger than many patients. As Levy points out, “Dave was an outlier himself when it came to patient involvement. He is computer savvy and was indefatigable (yes, even with cancer) in searching out the latest about everything.”

Secondly, when patients gather information “from friends, family and the Internet,” often that information is well . . .  just plain wrong. Most friends and family members are not reading medical journals. They are not offering evidence-based advice. They are recounting anecdotes about what happened to Uncle Joe or their next-door-neighbor. Often, the anecdotes are garbled, or important pieces of information are missing.

In some cases, partial information may turn out to be a good lead to invaluable information–especially if you know how to use the Internet. But patients should understand that the majority of anecdotes from friends and family probably won’t help your doctor. Do some research before wasting valuable appointment time relating your brother-in-law’s advice.

The Internet can help patients find medical evidence that goes beyond anecdote to facts. But remember that many websites have an axe to grind—i.e. they are selling something. The Internet offers a smorgasbord of good information, biased information, half-truths and outright lies. Patients should pick their sources carefully. To get started, check out this “About.com” article that focuses on “Finding Credible, Reliable, Objective Health Information on the Internet.” 

This guide to patient empowerment offers some useful advice. For instance, you should always look for at least one more reference to confirm your findings—preferably two. “In general, if you can’t find the information duplicated in more than two or three references, then it’s questionable.” Be wary of “testimonials,” the website warns. And make sure your information is current.

About.com also offers a master list of “Patient-Friendly Internet References for Health and Medical Research.” On another About.com site you’ll find some tips on how to share Internet information with your doctor

Not All Patients Want to Partner With Their Doctor

In a brilliant book titled The Practice of Autonomy: Patients, Doctors and Medical Decisions, Carl Schneider explains that some patients want their doctor to take charge. A professor of law and internal medicine, Schneider supports the principle of patient autonomy, but at the same time he realizes that each patient and each situation unique. He recognizes that while some choices are chiefly technical, others are value-laden; some are reversible, while others are permanent; some will be made once, others repeatedly.  In some cases, a patient simply wants the doctor to take responsibility for the final decision.

Schneider turns to his own experience to illustrate the point:  “A few years ago, my dentist thought I was a candidate for the delights of a root canal. The endodontist did what endodontists do and presented me with the facts of my case. I said that was interesting, but did I need a root canal? He told me that was my decision. I replied that I understood that, but I would be glad of a recommendation. He made it clear that he would not and should not decide this issue for me. I asked what he would do if it were his tooth. He told me that his values might not be my values, so what he might do could not be relevant for me. I was baffled . . . morally reproved (why was I so debased as to refuse responsibility for this important decision?) irritated (why was I being required to make a basically technical decision?) and even bored (this was not the kind of issue about which I could work up any interesting or even useful ideas.) But the endodontist was adamant, sturdy in the righteousness of his cause.”

Schneider takes the idea of patient participation to an absurd and hilarious extreme. After all, this was only a root canal; one can understand why he just wanted the dentist to tell him what to do. But how would he feel if he were seriously ill?  Wouldn’t he want to be involved in directing the course of treatment?

Not necessarily. Many patients want to hand that responsibility over to someone they trust. They want a doctor—even if they are themselves doctors.

Schneider tells the story of Franz Ingelfinger, an editor of the New England Journal of Medicine, cruelly stricken with the very illness he had specialized in as a physician.

Ingelfinger wrestled with the uncertainties of his situation, gathering conflicting information from physician friends around the country. As anyone who has been seriously ill knows, medicine is shot through with ambiguities. Often there is no clear-cut “right” answer. The more research you do, the more uncertain the situation becomes. “As a result, not only I, but my wife, my son and daughter-in-law (both doctors) and other family members became increasingly confused and emotionally distraught,” Ingelfinger recalls. “Finally, when the pangs of indecision had become nearly intolerable, one wise physician friend said: ‘What you need is a doctor.’

“He was telling me to forget the information I already had and the information I was receiving from many quarters, and to seek instead a person who would dominate, who would tell me what to do, who would in a paternalistic manner assume responsibility for my care. When that excellent advice was followed, my family and I sensed immediate and immense relief.”

What many patients most want from their doctor, says Schneider, is “competence, and compassion.” They are not looking for a medical partner. They are looking for an empathetic expert who collaborates with other experts. I would include myself in that group.

On the one occasion when I was suffering from what appeared to be a serious illness that was not easily diagnosed, I focused on finding a doctor I trusted and respected. I saw four or five. It took me a while to find a physician who understood the symptoms, recognized the pain I was suffering, and was honest enough to tell me that diagnosis and treatment wouldn’t be easy. Once I found that physician, I turned the problem over to him–with great relief. I no longer felt I had to worry. Someone else who had both training, and the intuitive knowledge that comes with experience, was doing his best. An academic, he worked with and talked to others in his specialty. Ultimately, this doctor found a medication that worked, though he still wasn’t sure what caused the symptoms, or why the medication relieved those symptoms.
This didn’t bother me. I have been writing about health care long enough to have great respect for the uncertainties of medicine.

Even if I were diagnosed with a disease that could prove fatal, I suspect I would not want to spend my final months on my laptop, frantically try to ferret out information that might save my life. I know myself well enough to know that this would only ratchet up  my anxiety. It’s one thing to be “on deadline” when writing a post, another if the end-point is one’s own demise.

(I learned how the Internet can feed one’s worst health fantasies when I was diagnosed with “dry” acute macular degeneration (AMD). If it becomes “wet” AMD, the outlook is bleak.  One post on the Internet talked about not being able to see the faces of children and grandchildren, deep depression, thoughts of suicide. This was not a helpful post. As far as I could determine there is no way to know if or when this will happen. It took me a full week-end to put what I had read out of my mind.) 

Unlike e-mail Dave, if I were told I had cancer, I would find a physician I trusted and let him explore alternative therapies while I spent time with my family, read novels, rented a house on the beach where I could look at the ocean–doing everything I could to achieve some sense of inner peace.

This is, of course, simply a matter of individual temperament—and an example of how, in a crisis, it’s best to be true to yourself. This is what e-patient Dave did.

Patients Do Know More about Themselves

But while I wouldn’t be eager to surf the Internet, searching for a course of treatment, I would want my doctor to share his research with me, spelling out my options, making risks and benefits as clear as possible. At that point, I would want to share in decision-making because, like all patients, I possess unique knowledge about one crucial component in any case that a physician confronts: the patient herself.
As Levy points out, “the patient has ‘inside’ information about his or her own body that puts the doctor’s technical knowledge into a more immediate and precise context.” Physicians need to listen.

But it is not just that each body is unique. Each patient has his or her own fears–and priorities. Each lives in a unique situation—some are the parents of young children; others have a demanding career which means everything to them; still others are alone, caring for an elderly relatively. Some fear pain more than they fear death. Others are terrified at the thought of winding up immobilized in a wheel chair or a nursing home. These variables determine what an individual patient is or isn’t willing and able to undergo.

Can this patient tolerate the side effects from a medication that blurs his vision, making it impossible to read a newspaper?  Is she willing to take the risk that, if she undergoes the surgery, she may suffer a stroke and wind up paralyzed on one side? Does this patient want to “fight to the very end,” or would he rather spend his final six months at home, with palliative care, even if by undergoing further hospital treatments, he might win another year? 

The best medical advice coming from the most knowledgeable physician will fail if he is not able to take these variables into account. This is why, as patients, we want doctors who are compassionate as well as competent—open to hearing what we say, not just about what we learned on the Internet, but about our values, and what we know about ourselves. 

10 thoughts on “Doctors and Patients Sharing Information: A Two-Way Street

  1. Hey Maggie – thanks for the honor of a mention!
    For the record, I agree with everything you say, especially that it comes down to being true to oneself. IMO, empowerment is not about being uppity, it’s about being free to speak up and play as active a role as you want, to be as engaged as you want.
    My mom’s 100% empowered and engaged. Her husband was the polar opposite: “I don’t think we should be asking the doctors all these questions.” My good friend Monique Doyle Spencer, multi-time cancer kicker, considers herself not an e-patient (and explained why); meanwhile her husband (not her physician) found an effective treatment for Hand-Foot Syndrome (a nasty burning side effect) online. And Monique posted it online for others to discover. Her little blog now shows up in the first page of Google results for “Xeloda side effects.”
    My view is that this is a new dance, because a major new factor has arrived on the scene: information that was previously available only inside the fortress can now be found lying on the ground outside the castle walls. That doesn’t make everyone a genius – to the contrary, it raises questions of how to make good use of it. Not everyone wants to, as you say. And not every physician wants to “dance” that way. But for those who want it, a new world is possible.
    My own physician, Danny Sands, says in his speeches, “Embrace knowledge symmetry.” Not absolute symmetry – just the idea that it’s *possible*. The useful question is, how do we adjust our flaps to recognize the shift in the wind?

  2. Hi Maggie,
    I have to admit, I find Dr. Schneider’s root canal example annoyingly misleading. You say he uses it to demonstrate his point that some patients want their doctors to take charge, but I don’t see that at all. Schneider is asking for an expert opinion, one of the reasons we go to specialists in the first place. If an endodontist told me that he couldn’t say whether or not I should get a root canal, I’d go to another endodontist. I want to be involved in the decision, but I don’t know enough to say whether or not it should be done–at least not without some information. I want the endodontist to say, “Here’s why your dentist recommended a root canal and here’s why I agree [disagree].” That’s hardly the same thing as having the endodontist take charge and decide for me. Even if she gives her opinion, I can still disagree.
    Some years ago, I went to a GP about a large lump on the back of my neck. I asked him what he thought it was, and his response was, “I don’t know. What do you think?” Astonished, I asked, “Could this be an infected lymph node? A fatty tumor? Cancer? Should it be biopsied? Should you draw a blood sample?” Again, his answer was, “I don’t know. What do you think?” I said I thought I needed to talk to another doctor.
    As in Schneider’s example, I was exasperated at this doctor who seemed to want me to take on the role of diagnostician. I didn’t want him to “take charge.” I did want him to at least have some body of medical knowledge to draw upon. I wanted a professional opinion.
    When we say that we’re e-patients, that we want participatory medicine, that we want our doctors to think of us as partners, we’re not saying we want them to shut up and sign approvals for tests. Participatory medicine doesn’t mean the patient takes over. Nor does insisting that our doctors employ their skills, knowledge, and judgment equate to opting out of participatory medicine.
    Also, as for the caveats, yes, of course we have to be careful. E-patients have to check our sources and date them. We have to verify the completeness of our information. Still, I’m a good researcher. I know all of that. For once, I’d like to be able to share a resource with a new doctor without first having to immediately hear, yet again, how notoriously unreliable Internet resources are.

  3. e-patient Dave–
    Thank you very much.
    I’m glad we agree, and glad that you weren’t offended by my argument that some patients just can’t–or don’t want to–do what you did.
    At the same time, I think you’re offering a great example for many patients who might otherwise just follow doctors’ orders.
    What you are describing is, indeed, “a new dance.” And for many patients, and doctors, it is a way to bring down the castle walls.
    I’d still like to think about how to bring down the castle walls for others–
    a new dance for patients who are less well educated, less computer savvy, or, like me– looking for a doctor who will take on the respnsibility for diagnosis and coming up with options for treatment–and then let the patient share in the final decision.
    Looking forward to your book.

  4. Thank you for this article. I totally agree, both as president of ICMCC (see my speech at the last ICMCC event http://www.icmcc.org/2010/06/14/icmcc-event-2010-2/) and as a patient (www.lodewijkbos.com).
    Last week I was invited to write a chapter in a book on eHealth and to send title and abstract. It had the same “two-way street” in the title.

  5. I believe those who want to take a vested interest in their healthcare plans will do so, and those who don’t, won’t. The internet can either make that process easier or more difficult, depending on the sources the patient uses. (Thanks for providing some good ones.)
    One negative aspect occurred with a certain hypochondriac relative of mine who had become absolutely consumed by the internet and amassed over $15,000 in medical bills over the last 3 years. She wasn’t satisfied unless the physician ordered the tests she knew would prove to everyone she had “it”. Finally, the physicians caught on, which caused her to bypass them and go directly to the ER.
    It finally came to an end, of sorts, when an intervention took place last year. Now through counseling, she is a little better, but always tempted by the lure of the internet.

  6. Lodewijk Stop Smoking–
    Lodewihk- thank you!
    Stop Smoking– I can see how someone with hypochondrical tendencies could go into a feeding frenzy on the Internet.
    This is an areas where doctors need to counsel patients. . .

  7. The practice of medicine at its finest hour is to assist the patient and to comfort the patient to become themselves.
    Also medicine works best when their is mutual and simultaneous healing of both the doctor and the patient.
    I realize the idealism of my statements
    Dr. Rick Lippin
    Southampton,Pa

  8. Dr. Rick–
    I greatly respect the idealism of your statement.
    What you say about “simultaneous healing of doctor and patient” reminds me of what Berwick says about how “helping” (rather than “restricting”) the patient is a “tonic” for the doctor as well as the patient.
    (See my newest post on what Berwick means by patient-centered care)

  9. Dennis–
    I used both the root canal example, and the example of a doctor suffering from a potentially fatal disease that he himself specialised in (but who ultimately wanted another doctor to take charge)
    to illustrate a spectrum of patient and doctor attitudes.
    As I said, the root canal example takes the idea of patient autonomoy to an aburd and hilarious extreme. (Though as you indicate, there are doctors out there these days you say: “I don’t know Dave, what do you think?”)
    There are also patients (like me and the doctor in the second example) who really don’t want to participate in diagnosing the disease and reseraching treatment options.
    They may be too sick, elderly, too frightened, or like me, just know that once I got on the Internet, I would never stop.
    (Consider how much time I spend reseraching and writing these posts. Then consider what would happen if I thought my life depended on it! I would really need to hand control over to someone else. Then, I want him to tell me about the risks and benefits of the treatment options–at that point I want to weigh in and help decide what is best for me. )
    Finally, Dennis, I believe that you are a good reseracher, and know how to vet your sources.
    And I know that many doctors simply roll their eyes when a patient says: “I saw something ont he Internet . . ”
    But a great many people simply are not at all sophisticated about checking their sources.
    I tried to point to websites that might help them vet the material before visiting their doctor.
    Doctors (or at least some doctors) would be much more open to patients who talk about what they found on the Internet if so many patients didn’t come in with cleartly outdated or unproven information.