Tired of telling patients to go to WebMD.com or…yawn…NIMH. nih.gov for their Internet information needs? Here are some alternatives that will probably keep your patients a little more engaged, and as a result, more educated.
PsychCentral (http://psychcentral. com). Billed as the “Internet’s largest and oldest independent mental health social network,” Psych Central was founded by psychologist John Grohol in 1995. Patients will find plenty of mental health news in the form of articles and blogs, and can participate in a variety of support groups and forums. The funding is through ads, many from drug companies, but the editorial content seems far more independent than sites such as WebMD, which allow drug companies to sponsor entire “resource centers” and associated content.
Crazy Meds (www.crazymeds.us). Crazy Meds was founded and is administered by Jerod Poore, who makes no mystery of the fact that he has bipolar disorder, autism, epilepsy and several other problems. In fact, he devotes an entire page on the site to his detailed medical history. Thus, the site’s irreverent slogan, “by crazy people for crazy people,” while insulting to some, is accurate. Considering that none of the site’s content is written by a doctor, the drug information is surprisingly informative, accurate, and is vastly more entertaining than most similar websites. For example, here’s a typical Crazy Meds line on antidepressants: “Most of the commonly prescribed antidepressants act by inhibiting reuptake of one or more neurotransmitters in your brain. Basically that means bits of your brain get to soak in your own juices for longer periods of time and that marinating makes them more tender, and you happier.” I’m not sure any neuroscientist could have explained it much better.
I spoke with Mr. Poore on the phone. He describes the site as being particularly appropriate for treatment resistant patients who don’t mind a lot frank talk and some gallows humor. He lists the site’s core values as: 1. “Which sucks less, meds or being crazy?” acknowledging that medication side effects are lousy but are a necessary evil; 2. “There is no perfect medication,” meant to encourage patients to stay the course through the side effects; and 3. “A slow titration until symptoms stop, and then that’s the dosage.”
Psychobabble (www.dr-bob. org/babble). This web forum, like Crazy Meds, is focused on medication, but branches out into other topics such as psychotherapy, politics, and alternative treatments. Recently it was written up in the New York Times Magazine (http://ny ti.ms/bFyq6D), where it was nicknamed “Pharmville” and described as a “vast and trippy symposium about the human mind.” That’s pretty accurate. I’ve found psychobabble extremely helpful in various ways. For example, here is a post from someone who started Nardil a few weeks ago, is still depressed and who has received advice from other people taking Nardil to try to have patience: “It’s so good to hear that there might be a surprise around the corner, I’ve been so lost ever since I went off the SSRIs. My family’s really starting to worry about me and they want me off of this stuff. But the way I was living on SSRIs wasn’t truly living either. The depression wasn’t gone, more like muted, and I never got excited about anything. It’s like I was watching the world go on from a distance. But I wasn’t crying all the time, so it seems to outsiders that I’m doing worse. I have such high hopes for this medication.” It’s interesting to hear such articulate patients describe their experiences on meds that we prescribe.
PatientsLikeMe (www.patientslike me.com). Launched in 2006, PatientsLikeMe is a combination social networking site/personal journaling tool/data aggregator. Unlike the other sites we’ve mentioned, PatientsLikeMe covers more than just psychiatric illnesses, and has gained fame for aggregating data on symptoms and medications from thousands of patients, and presenting the information in user-friendly graphics. If you’re taking Wellbutrin and are curious about the doses that other patients are taking, PatientsLikeMe will give you the answer in a bar graph, instead of forcing you to scroll through dozens of comments from others.
Patients are encouraged to enter data regularly as their treatments and symptoms change, and software can create slick mood charts that help correlate mood changes with changes in medications, life events, etc. You can print the chart and bring it to doctor’s appointments, as part of an automatically generated PatientsLikeMe Profile. Most of us tell ourselves that we should be handing our patients mood charts but never get around to it—well, now you can refer them to PatientsLikeMe and let them be the ones to procrastinate!