“The Internet is scary.” An acquaintance of mine recently came to this conclusion when her daughter found a lump in her breast. After being told by a physician it could be cancer or it could just an infection, the pair went online to try to get more information on symptoms, diagnosis and treatment of both possibilities.
“If you type in her symptoms, it sounds like she has cancer,” she said. “My daughter is so upset.”
I explained that to know whether it was or wasn’t cancer, more tests would be necessary and encouraged her and her daughter to discuss what steps would be taken to get a definitive diagnosis.
Situations like this are becoming more and more common. Patients are no longer content to be mere bystanders when it comes to healthcare. In fact, they’re being encouraged by campaigns like AHRQ’s “Questions are the answer program,” and organizations like The Society for Participatory Medicine, to become active participants in their own care. Plus, as my acquaintance found, there is boundless medical information available to them online.
Patients who use the Internet or other electronic tools to find health information have been dubbed e-patients. Healthcare providers can expect to encounter a greater number of e-patients as technology becomes more ingrained in our lives. But how providers interact with more informed and more involved patients varies greatly. These variations can lead to either success or frustration for the clinician and patient alike.
As an RN and family member of a patient, I’ve seen some definite “DON’Ts” when it comes to dealing with e-patients. Avoiding these stumbling blocks will improve the patient-provider relationship:
Don’t discourage patients from doing their own research
Almost 10 years ago I got a call from my mother-in-law. She had been to her primary care doctor for a routine physical and had the standard blood work drawn.
“What does it mean when there is too much protein in your blood?” she asked me. Being a neuro nurse, I didn’t have the answer on the tip of my tongue and told her I would have to look it up.
“My doctor didn’t want me to worry so she didn’t tell me what it could mean,” she said. Not being a digital native it didn’t occur to her to go online and search the term “high serum protein levels.” It occurred to me though. After I hung up with her I did a quick Google search. The results: Multiple myeloma. She was officially diagnosed with the plasma cell cancer about a week later and died from the disease in 2006.
She had a particularly aggressive form of the disease so her physical outcome would probably have been the same even if she had been encouraged to do online research. However, I feel her emotional health would have been far different. Had she been empowered to use the resources available on the Internet the diagnosis would have come as less of a shock. I think she would have felt less hopeless and would have had a better understanding of treatments and prognosis. She would have reported symptoms earlier and would have known, thanks to the Internet, prompt treatment was essential to keeping the cancer at bay. And she would have been able to meet and connect with other multiple myeloma patients via online support groups.
Don’t be offended by patients’ questions
I wasn’t even an e-patient and my question regarding my mother-in-law’s medication orders was not welcomed by her ICU nurse. When I left the room to make a cafeteria run, the nurse turned to my husband and said, “What does she need to know that for?” Clearly she did not appreciate my curiosity. Had she taken my question seriously and tried to find an answer for me, she would have discovered that my mother-in-law was receiving a medication that had been discontinued before she was even admitted to the hospital.
My question was based on my nursing knowledge rather than an Internet research, but I have seen healthcare providers react the same way to patient questions. I’ve heard the comment, “Where did she go to medical/nursing/physical therapy, etc. school?” when patients ask questions or make suggestions based on research they have done.
Healthcare providers need to take their patient’s questions seriously. Try to see your patients’ questions in this light: If you took your car to the mechanic and he said it needed a new part, wouldn’t you want to know what that part did, why it needed to be replaced and how long it would take for the car to get repaired? Of course you would. In the same respect, your patients are not asking questions because they doubt your skill and knowledge as a clinician. Usually, it’s because they are trying to better understand their disease process and treatment options.
On the flip side, there are some “DOs” that will help your e-patients make better use of the information available to them.
Do point them in the right direction
The amount of information online can be overwhelming, as my acquaintance and her daughter realized. Give your patients a leg-up and point them in the direction of helpful websites and studies. Nurses spend the bulk of their time with patients and do a great deal of patient education. Compile a list of online resources to give to your patients and encourage them to explore further resources online. With a little guidance, they will feel empowered rather than intimidated by the information on the Web.
Do teach them to be savvy consumers
My friend is a physical therapist who encourages her patients to go online to learn more. But she always advises them to look for reputable sites, like the Centers for Disease Control (CDC) rather “Chuck’s knee replacement.”
Just because there is a lot of information on the Internet doesn’t mean that it’s all good or accurate. Explain to patients that all information is not equal. Tell them that a large, controlled-randomized, trial will get more solid information than a small-scale study. Let them know they should be leery of small studies done by a company that makes a product. Be open to explaining the information they do bring to you and be willing to learn from the patient. They may run across a great piece of information that you didn’t know was out there.
Healthcare providers working with e-patients should expect to see improved patient outcomes. Patients who feel like partners in their care will make greater investments in their health.
Jennifer Thew, RN, MSJ
Latest posts by Jennifer Thew, RN, MSJ (see all)
- Telemedicine Use Primed to Keep Going Up… Up… Up - February 10, 2015
- Burnout Among Health IT Professionals - January 13, 2015
- Gathering Together to Create a Family Health History - December 2, 2014