I was at an appointment with a client when a medical professional cautioned him to be wary of the internet sites on his disease. The reasoning was, the sites sometimes only told the negative side and it wasn’t necessarily factual. My client was young, computer literate and had been using the web to get a better idea about his options.
My client had been having a difficult time with his illness , had needed multiple surgeries some to fix past surgical mistakes. His healing and was slow with many set backs. He was looking for options and support on the web.
Having a chronic illness can be lonely and isolating especially when treatment is not going as planned. The internet offers information and support. My client understood it was important to filter the information available and apply it to him when it was relevant. He had gotten very smart about information because the original surgeon had gotten good reviews on the web but was not the case with him.
That is why I was surprised when the doctor felt compelled to warn my client away from going to the consumer sites and chat rooms about his illness. I have heard this feeling expressed again and again by medical professionals. I understand there is much misinformation available on the web and scam sites. If clients ask me about researching on the web, I tell them to filter information. What I mean by filtering information is; if you find a new treatment or information, find another site that verifies it. If it is a treatment that have some credibility, other people will have written about it. I also recommend talking to someone about what you have found. Clients want to speak with their medical team but there is often resistance.
Many medical professionals don’t like it when patients present with information downloaded from the web. Sometimes the information is too off the wall but often it is research they didn’t know about. When I practiced, I had a few MIT physicists who ALWAYS had tons of information for me. At first, I was unnerved but I came to enjoy it because I was able to learn and I felt we were working as a team.
I recently had a client with recurrent ovarian cancer. She joined a group on yahoo and was able to discover information on chemo resistance testing of tumors. It was an area I didn’t know much about. As we continued the research, we were able to find an organization called Clearity Foundation, www.clearityfoundation.org. They are a not for profit, that works with a lab to do the testing and helps pay for it. They also have a huge data base of results and can assist with navigating which drugs have worked given the resistance. This organization was founded to provide important information on chemo resistance so women with ovarian cancer can get the best possible treatment.
Since most specialty centers and doctors don’t do chemo resistance testing, finding this site was a blessing. My client requested her surgeon send a sample of the tumors and he agreed.
I would suggest that medical professionals work to find a balance with patients about internet information. I feel it is a way for patients to feel involved in their care. As patients become more like consumers, web surfing is going to become the norm. Perhaps a better answer to a patient who brings in web downloads could be ” How about we talk about this?” Use the time to better educate the patient about their illness and options.