Internet: Inform or Interfere?

Posted by on Jun 27, 2016 in General Medicine | 6 comments

Internet: Inform or Interfere?

Autonomous dissection by Internet. We all do it, but is taking an online medical selfie really a good thing? Disease, prognosis, and treatment explained in exquisite, exhaustive, confused, nonspecific and erroneous detail, which often yields the wrong diagnosis, recommendations for irrelevant therapy and wildly inaccurate conclusions, resulting in confusion and fear. Given this common reality, should patients avoid computer self-investigation entirely and leave e-research to the “professionals?”

The Bad

Patients, left to roam the wellness web world alone, frequently do not search for information about the correct diagnosis, stage or treatment, and may miss the “big picture” entirely. Witness the patient who arrived in my office devastated by a stack of printouts that “confirmed” her impending death from liver cancer. Actually, she had lymphoma, next to her liver, not a primary cancer of the liver, and her prognosis for cure was quite good.

Then there is the recent patient considering removal of both breasts because of her interpretation and e-investigation of a biopsy result, when actually she needed no therapy at all.

Legions of patients delay, resist or out-right refuse indicated and beneficial drugs, surgery or radiation, because of rambling e-data which does not apply to their situation or, if they actually do get the treatment correct, do not place the side effects of therapy in balance with the risk of their medical problem, if left untreated.

Finally, there are the e-predators, who sell or push bizarre ideas cloaked in scientific jargon, which lead individuals to make bad decisions and lose critical windows for life saving care, such as my patient who, coaxed by on-line marketing, received some sort of “enzyme treatment” which wiped out her sympathetic nervous system.

When trying to use an infinitely broad tool, such as online research, to interpret a complex personal medial problem, the risk of error is very high and decisions can be disastrously wrong, especially if the searcher lacks a sophisticated understanding of healthcare or biology.

The Good

The invaluable addition to medical care of personal online research, done in the quiet and peace of one’s home, is that you can study, consider and process new information, start to build an understanding of language, concepts and knowledge. A patient and family learn basic ideas, such as the role of chemotherapy verses radiation, or hormonal blockade verses immunotherapy, or gamma knife verses laser and start to become comfortable with the garble of jargon. Words like “neoplasm”, “neutropenia”, “metastasis” and “proton” become more familiar and it is easier to understand doctor-speak around an illness.

On-line, from other patients, you may get a feeling about the experience of dealing with the illness, such as the process of staging, monitoring or the steps in treatment, as well as common side effects. Knowing what to expect can be empowering. In addition, you may learn who are the experts and where you might go for care.

This online introduction results in better conversations with your doctors during each visit and over time. The physician’s role is to be guide and teacher. When the “students” have a rudimentary understanding of their illness and therapy choices, they ask better questions and likely understand the answers. Student-patients who take “e-Cancer 101” are much easier to advance to “Cancer 301” and make the best decisions.

Therefore, I am a great fan of Internet self-medical research, both at the beginning of the care path and at each point along the journey. It means a better chance of cure.

The Conclusion

Do Internet research about your medical condition and care. However, until you have a chance to review your newly obtained knowledge with your doc, remember that there is a real chance that your interpretation of your diagnosis, treatment choices, and especially prognosis, may be wrong and or at least not right on target.

Not all breast cancer is the same. Lung cancer treatment is highly variable. There are more than 50 forms of lymphoma. Radiosurgery is not surgery. Many are cured of Stage 4 cancer, but others die from Stage 1 disease. Pathology reports are often so complicated that even your oncologist may have trouble figuring it out, while you, using only a website, may become very confused.

While shared experiences are important, no one else, in any cancer chat room, is exactly like you. Study, learn and think … but share your discoveries with your doctor.

Use your explorations as a base, an elementary class. Print out information. Write notes. Absorb basic ideas. Do not make decisions, yet. Your doctor will be your personal guide, interpreting and adding to what you have learned. Until then, take a deep breath and keep some distance. While vast, the online world is not specific. Not everything on the Internet is true and little was written just for you.

6 Comments

  1. Thumbs up.

  2. My docs firmly believe that had I not consulted Dr. Google one last time when given 6 months to live, I would not have my miraculous full recovery of the past 3 years. Epic determination on my part and a willingness by my lead Doctor to let me try a treatment outlined in a few sentences in an old research paper led to my success. He later told me that he was just humoring me since the prognosis was so grim. Eternally grateful he had the courage to type the prescription that brought me back from the brink!

  3. You’re right, Dr. S: not everything online is true. But physicians must accept the reality that virtually all of us, patients or not, look stuff up online as a daily matter of course. You simply cannot un-ring that bell.

    I wouldn’t buy a kitchen appliance, a tree for my garden or a bicycle without Googling – why wouldn’t I immediately do the same when faced with a scary medical diagnosis? If people like that woman who looked up liver cancer instead of lymphoma are being misled online, it’s because she wasn’t clearly informed about the “correct diagnosis, stage or treatment” before she left her appointment. “Doctor-speak’ and confusing medical jargon in the clinic are prime drivers of patients’ online searches.

    Since we already know that many if not most of us WILL of course be going online to seek more understanding of what’s happening to us, the remedy is NOT to convince us to stop, but to convince physicians to steer patients towards credible resources – like Up To Date, Mayo Clinic, etc. Failing to offer a physician-recommended list of good online resources ensures that patients will “roam” around out there (some of them unfortunately landing on sites by Mercola or Oz or others who do have the letters M.D. after their names).

  4. I tried to get information fromACS, Sloan-Kettering, and MD Anderson about my rare and deadly cancer. I even made phone calls. After I hung up, I did a Google search- type of cancer and site. Immediately I was in MD Anderson’s eLibrary. It helped me to trust a likely experimental radiation (length and strength of dose and duration of the treatment time). So far, no secondary cancers.

  5. Surprisingly, even some of the “reputable” websites have misinformation. Medicine is so complex and online information so varied that one can easily be confused. The best answer is from a good doctor.

  6. Good post and good responses, especially Carolyn Thomas’ second paragraph.
    However, one thing that patients should use the internet for that is not mentioned here is to check out your doctor or any doctor(s) you are are considering. There’s no shame in checking out a doctor’s qualifications, actions against (their license) or from whom they receive additional compensation.

    The AMA does not release all known information about doctor malfeasance to the public. If a doctor does have black marks on his/her record, they likely will be only those of a substantial nature which ended with a $ settlement above a lower threshold under which all else goes unreported.

    Some doctors receive large sums of money from pharmaceutical companies for speaking engagements or other reasons that may be pertinent to a patient situation where the doctor is discounting the patient’s internet info on a particular treatment in favor of one provided by a pharmaceutical company from which he/she receives compensation. This is not always a bad thing but it is worth knowing the doctor’s reasons behind a treatment choice and worth asking the doctor about if it is of concern or appears not to be “above board.” The patient or advocate should not ask the doctor questions of this type in an accusatory manner and the doctor’s answer(s) should be forthcoming without hesitation or retaliation. If not, perhaps another doctor is in order.

    Still, why do so many doctors and other medical personnel get so upset about someone who’s actually living with a disease or condition (terminal or not) wanting to become a subject matter expert on what is ailing them? Why shouldn’t patients want to know about all of their options (alternative or not)?

    One can’t go into most any doctor’s office or hospital without somewhere being urged to use WebMD. Their content is largely generic and much is somewhat juvenile, in my opinion, when compared to other respected sites available on the internet. Many, many patients are quite capable (and motivated) to understand even scholarly works about their conditions. If not, they ask.

    I think that it is only a minority of patients who are blindly following “quackery.” Doctors should be glad for the majority of patients who are asking them for their thoughts and guidance on what they read on the internet. They shouldn’t be getting all huffy with them.

    We learn from our failures…so doctors, correct us when we are wrong (kindly, for we are not at our best) but give us solid, understandable reasons (and specific to us) as to why we should prefer things your way.

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