Keywords: e-Patients, patient engagement, shared decision making, online patient communities.
Citation: MacDonald K. One clinician’s awakening. J Participat Med. 2012 Oct 24; 4:e26.
Published: October 24, 2012.
Competing Interests: The author has declared that no competing interests exist.
I am a nurse. I am a patient. Until about a year ago I felt very clear about how each of these played a role in my life. I was sure about which one made me strong and which one made me weak. Which was helpful to others and which was a burden. The one that would aid me in my work and the one that would hold me back. Then an email arrived in my inbox that would turn all those beliefs upside down. But this certainly didn’t happen right away, because above all else, I am stubborn.
The email came from my friend and colleague Bill. He said he had some ideas that he wanted to discuss with me but first, he asked if I would watch a video and give him some feedback on it. The video was a TEDTalk featuring e-patient Dave deBronkart. In the video Dave told a story about how he used the internet to connect to information and other patients to learn about treatment options his own doctor had not mentioned. He claimed that what he found saved his life.
Now, I pride myself in being a creative person, able to think “outside the box.” That is why I left bedside hospital nursing to work for a small progressive company. I wanted to expand my horizons and be involved in making changes, big changes that would help patients get better care. My days were spent thinking of new and innovative ways to improve patients’ involvement in decision making with their doctors — with their doctors, not other patients!
Bill seemed very excited about the possibilities he imagined after viewing the video, developing tools that would help patients help other patients. I knew my response was not going to be what he wanted to hear (although he says now that it was exactly what he expected). The summary of my five-paragraph reaction was “I don’t know where you are going with this but you are wrong. This is a horrible idea. The internet is a bad place, full of misinformation. Patients should be guided through their illness by medical professionals, but not by other patients. This guy just got lucky. Leave me alone.”
A few weeks later he appeared in my office to discuss his thoughts again. Once again, I told him that I was not interested. In my opinion his ideas were dangerous and didn’t make sense to me. He graciously backed out of my office and I did not hear from him for a while. I felt bad about that, but I also felt it was the right approach. I didn’t stop thinking about it though.
This was a smart man who I had always admired for his great ideas, so why was he so off with this one … or was it me, what was I not seeing? I mentioned this to a friend who asked, “Well have YOU ever used the internet to get support for a personal medical problem?” My response was “no,” not for me personally; only for the patients I work with. That was part of my job every day. I knew what they needed: information from good reliable medical sources, right?
Then one day another staff member came to my door to let me know that one of our patients had changed treatments, not specifically because of the medical information that we sent to them, but because the treatment had been discussed in their online support group. A treatment their doctor had not discussed. This led them to get a second opinion and they were now on the new treatment and progressing very well. Hmmm…
Around this same time the nightmares started. Night terrors actually that would wake me and everyone around me. These dreams had terrified me at night and haunted me during the day. And they had reminded me of unspeakable violence that had happened in a past relationship. I had not dreamed much at all for a few years. Was this my brains way of protecting me? But now something had changed, some switch had been turned back on.
I had become quite good at suppressing my symptoms of Post-Traumatic Stress Disorder (PTSD). Attempts to treat it years before with therapy and medication seemed to make me feel worse not better, and I didn’t want anyone to see me as weak or not fully capable. So I trudged along in silence adapting as required. I could have a full blown panic attack in a room full of people and no one but me would even know.
I decided to give treatment another try and was referred to someone who was well known in my area for treating trauma. During one of our first meetings she asked me to consider EMDR (Eye Movement Desensitization and Reprocessing). Knowing very little about it I did what any good clinician would do. I headed to the medical literature.
What were the standards of care? What did the outcomes data show? As I sat up late one night reading yet another article I realized that there was something missing. What was I still looking for? Why was I still not feeling comfortable or safe, and why was I having trouble making a decision? And then I remembered my colleague Bill. So I typed “PTSD support” into the search box and began to explore a new world. I spent all night reading posts from patient after patient. Some who had success with EMDR and some who didn’t. But all of them spoke genuinely and in detail about their experiences. They described how they decided on the treatment, and what going through it was like. They discussed the side effects they experienced, and how they felt after treatment. No one was giving medical advice; they were just sharing honest accounts of what they had experienced. Whether they were doing it as a cathartic exercise or to help others didn’t matter, I couldn’t stop reading. And that night I made a treatment decision.
I continued to follow those online communities as I progressed through treatment. I also started contributing my own experiences. It was the least I could do to pay back a community that had helped me so much. I was starting to get comfortable with this idea. Then late one night, I saw a new post that made me pause and reminded me of those concerns from long ago. This person was in crisis, maybe even danger and, in my mind, they needed help right away.
The patient in me felt for this person. I had been where they were. I knew what I wanted to say to them, the same things I had needed to hear in the past. But then the clinician in me froze. I don’t know this person’s history. This is not my area of expertise. What if I say the wrong thing and something bad happens to them? The clinician in me made the patient in me doubt my own experience, and so … I did nothing. A short time later another patient jumped in and said all of the things I had been thinking. They ended their post with, “…it sounds like you should seek some medical help tonight. Stay in touch. Let us know that you are OK.” The person did seek help that night and was OK. No thanks to the clinician in the room.
Weeks later I came across a similar post. It had been posted minutes before and no one else had responded yet. I did not hesitate or feel the need to research my response because, this time, e-patient Karen answered. I answered right away with the confidence that only another patient with a similar experience could do.
The next day I sent an email to Bill apologizing for being so narrow-minded and asking him to please share his ideas with me again. Since that time we have been working together on new ways to bring more patients together to learn from each other. To spread the word that, whatever has happened to earn you the title of patient, or caregiver, has also given you another precious and powerful thing: personal experience! Because what this clinician has learned is that sometimes being a patient is what makes us strong, and helpful, and right.
Copyright: © 2012 Karen MacDonald. Published here under license by The Journal of Participatory Medicine. Copyright for this article is retained by the author, with first publication rights granted to the Journal of Participatory Medicine. All journal content, except where otherwise noted, is licensed under a Creative Commons Attribution 3.0 License. By virtue of their appearance in this open-access journal, articles are free to use, with proper attribution, in educational and other non-commercial settings.