Why fieldwork in patient communities is essential

Thanks to a tweet from Brian Ahier, I’m re-reading Internet Health Resources from 2002. It was the first time we’d done extensive online fieldwork in addition to national phone surveys, yielding stories like this one:

• One mother told how, when she suspected that her daughter had a serious respiratory infection called RSV, she looked it up online and took her to the emergency room. The doctor at the hospital sent them home with a recommendation to call a pediatrician if the girl’s condition did not improve within three days. But the mother was sure her online research was accurate and saw her pediatrician the next day. The girl did have RSV and stopped breathing at the doctor’s office. The mother wrote, “Her life was saved because I followed my instincts and I only followed my instincts because of what I read about RSV on babycenter.com.”

I was hooked. Stories and data would inform my research from then on.

Hundreds of people from the Brain Talk Communities answered that first online survey, probably because founder John Lester posted a direct “ask” at the top of the site and his many (rabid) fans clicked right through. Hundreds also arrived via DrGreene.com, thanks to a lovely invitation posted by Cheryl Greene. Only a few came from ACOR.org, probably because founder Gilles Frydman posted it on the ACOR website, which very few members visit — all the action is on the listserves.

We followed up a few years later with a special survey of ACOR members. Gilles and I reached out to each listserve’s leaders, who are like the mayors of small online towns, and asked them to help us make the case. A whopping 1,680 people answered the essay questions within the space of a week. The resulting report was published in 2007, E-Patients with a Disability or Chronic Disease. Some of the quotes struck such a deep chord I could probably repeat them word for word:

• “As a parent of a child who, at 3 years old, was diagnosed with Acute Lymphoblastic Leukemia, it’s very overwhelming at the beginning. The child is hospitalized, all kinds of new terms and medical jargon is being thrown at you and you are emotionally overwhelmed and the same time trying to digest information that you never knew existed but has become extremely important to you. Having other parents available to help share their experiences is like having a lifeline.”
• “As the mother of a 4-year-old who was diagnosed with cancer, I was not able to look online or read about the disease until after treatment. I couldn’t handle the emotional turmoil of gaining knowledge which also scared me.”
• “I’ve had to educate myself very quickly – alone. Without the internet medical resources I would be sitting in libraries for time I don’t have, out of my house and without access to the amount and quality of information received [online].”
• “At the time of my diagnosis, my doctor assumed that I had already gone online to pursue treatment options and the standard course of regimens. I hadn’t. I was too overwhelmed and didn’t know where to turn.”

I’m so grateful to all those who have taken the time to answer our questions, either online or in phone surveys. Their time and insights are an incredible gift. I hope the research I publish is a worthy gift in return.