A few years back, I hurt my leg. Badly. So badly, I wasn’t walking well at all, was predicted to never run, ski, swim competitively or, do what had injured me – skate. The injury was dramatically sudden, painful and scary in ways I had never experienced. My first doctor was unsure exactly what I had done. The next ordered the right test but told me there was no repair. The next consultant agreed.
Then a friend stepped in to help. He lives in Switzerland but even from that distance, managed to turn the tide for me. How? By going online and searching for doctors and surgeries related to my injury and by finding a support group of people who also had my unusual injury. He emailed me the link to the support group and I responded:
Thanks but, I’m not that kind of patient.
Don’t be silly, he told me. So I clicked the link and found a world of education and support. In that moment of clicking, I became an “e-patient”
This new term, “e-patient”, is meant to describe a patient who is involved in their healthcare as an equal partner to their physicians. e-patients use electronic tools. They are empowered, educated and engaged. They see the importance in being equipped with the tools to help make decisions about their care. These tools can give e-patients access to medical records, education about their condition, or the support of groups of patients like them. e-patients are producing a culture shift in medicine.
This culture shift is especially visible in the area of breast cancer care. It is perhaps best illustrated with the story of one specific support group. Two friends who are breast cancer survivors teamed up with a breast surgeon from L.A. to start the support group #BCSM. It is held every Monday night as an hour-long “tweetchat” on Twitter. These three women explain:
While other physicians and academics debated how health care could even be discussed in social media and patients were warned to “be careful with research on the Internet”, two important facts didn’t budge. The Internet was not going anywhere. Neither was cancer. This year, some 290,000 women in the US alone will be told they have breast cancer. The need for #BCSM was clear. The project was on.
The mission of this impressive group is to support, educate and empower patients diagnosed with breast cancer. Patients meet and discuss their situation online to come out of the isolation that cancer diagnosis and treatment can create. Last Monday, 156 people actively participated and through their discussion, sent 2,724,048 impressions to their Twitter followers. Every week, expert physicians are invited to add “perspective and clarity” by discussing evidence-based recommendations and research with the group. The #BCSM support group’s mission has been accomplished through this inspiring model of weekly collaboration between physicians and patients. Both benefit.
This shifting paradigm is one we physicians may respond to with trepidation. We can feel irritated and challenged by patient involvement. And our patients do not respond well to our irritation. We are highly trained and this expertise gives us the ability to make informed decisions. However, our patients, especially those with chronic or unusual conditions, are also experts. They know about their own unique experience and through research can often know more about their specific diagnosis than their generalist physicians do. Patients can have an expertise to contribute to our decisions.
While I did not face the sort of life-threatening illness that catapults many into their role of e-patient, my experience taught me much. I see clearly that a well-educated patient has much to offer us. Seeking, supporting and trusting that input will serve us all well.