Researching Medicine Online Is Here to Stay
I wrote this piece ten years ago when my husband and I were struggling to get the right medical treatment for his cancer. Since the writing of the piece, our oncologist has become extremely open to the medical research that we do and the suggestions that we bring to him. As an RN, I know that the internet does not always offer correct medical advice, especially when people are just exchanging ideas through posts. But at the same time, doctors and nurses had to give up the protection of medical jargon and knowledge locked up in medical journals. Now the public has access and as a result, can bring ideas and questions to the consultation. The piece reflects frustration, but in the end–patients continued to research and learn about their medical problems and the result is good for BOTH doctors and patients.
The internet has been an amazing boon to Mike (not his real name) and me since he was diagnosed with a blood cancer. Because this leukemia is chronic, patients are initially “staged” depending on the disease’s advancement. The oncologist then monitors the patient until it’s time for treatment. The key word here is time. You have lots of time to learn about the disease.
Through the magazine, CURE,
This is a forum for people world-wide who have Mike’s specific disease—and there are other lists for various cancers. On the List we can examine and consider what others say about chemo-therapies, clinical trials, new research protocols, and what their physicians have told them about symptoms, laboratory tests, and treatments. We also share opinions on holistic ways to deal with the disease—diet, exercise, fatigue, vitamins—you name it.
From the List we got a link to a website that provides amazing information about the etiology and treatment of this leukemia. I explored the site and emailed a question, not expecting a personal answer. Not only did the owner write, I got a phone number and the message to call with my concerns. The web owner is a scientist whose close relative has the disease. She now dedicates her time to research, and her work has produced a connection with physicians at a major cancer research center. In addition, the website is raising money for new clinical trials. She provides a comforting parallel universe for patients struggling with this disease.
Being an RN, it was natural for me to take over the research for Mike. He could live his life, and I would learn everything I could. In the last year Mike has traveled to see two different oncologists affiliated with major cancer treatment centers who only see patients with his particular leukemia. It’s almost impossible for any oncologist to keep up with the masses of information being churned out on so many different types of cancer. Things are rapidly changing; new treatments are constantly being tried. We thought all of this—the research, getting second opinions, learning about different treatment options—was smart, the way to stay on top of the disease. Good thinking, right?
Now, we’re not so sure. Recently people in the general public have been more understanding of us than our physicians. When a condo owner heard that we had to cancel our vacation because Mike has the big C and it had flared up, this perfect stranger refunded us a huge deposit without even asking for a medical citation. But during that flare-up when we were scared and Mike’s symptoms were frightening, it became clear that it would be better for us if we sat quietly and didn’t ask for things—like a specific test, and then a week later, an appointment. In fact what happened to us was exactly the wrong way to treat cancer patients and their families who deserve extra care and attention. We were told by the oncologist’s nurse that we are difficult to deal with, though we have always been open about our research and shared second opinions with our physician. But during this crisis she argued that seeking other options made us difficult, and when I was pleading for an appointment being told there was nothing available, she suggested that we find another doctor. We don’t want another doctor. Besides, he’s the best in town. We just want access to the doctor we have, to be team players with him and his staff. We have the same goal—saving Mike’s life. (Finally, we did get that appointment.)
And certainly we do not know more than the physicians. But it’s very important to remember that the information we get from the internet about drug protocols, any type of testing, dosages of medications, IV drip rates etc is all generated by medical people. (A physician-patient on the ACOR list recently reminded us to get information from respected medical journals.) But the bottom line: the internet is here to stay. The information highway will continue to carry us along. Two years ago I went online to research tests I might need to explain why I was having vertigo. My internist not only performed all the tests, but shook hands on our collaborative effort.
Physicians and nurses have to be secure in what they know and be willing to listen to the information patients bring to them. If the information is incorrect or not applicable, this can be dealt with. But sometimes the information is right on and physicians and nurses need to be grateful that a patient cares about his disease and how to manage it—they should not feel threatened by that care. Information is power. It’s never good to keep patients in the dark. Information can insure patient trust and prevent that angry 3:00 am phone call that comes from fear and ignorance. Information can create a proactive management of a disease or disease crisis. A recent study in the Annals of Family Medicine found that more patients worry about a breakdown in communication with their physicians than they do technical errors. The physician author concluded that a therapeutic relationship between physician and patient better insures compliancy.
Because I now feel uneasy with Mike’s oncologist, I had to email the physician who created the protocol Mike will undergo. I asked questions about medications, and shared my concerns. He emailed me back, reassured me!! I sat at the computer with tears in my eyes.