Online Groups Help Parents Weigh Tough Treatment Choices

My heart goes out to Colleen Hauser, who was near tears in Minnesota this week as she agreed to bring her 13-year-old son in for chemotherapy after the two spent a week avoiding the treatment. Reasons offered for that varied, between the Hausers’ religious faith and their son’s desire to avoid the miseries of chemo. I’ve been working on another article about how patients use the Web to find medical information, and that got me thinking about whether the Hausers might have benefited from the free expert help I've discovered is available to all parents facing agonizing treatment decisions about their children’s health.

Parents facing a child’s health emergency, as the Hausers are with Daniel’s Hodgkin’s lymphoma diagnosis, can connect with parents who have been there, too. These networks of expert parents are as close as your computer, in online patient groups. They offer hard-won wisdom and up-to-date medical information that can be invaluable to families facing tough treatment choices. “Amateur” medical information isn’t clinically tested or peer reviewed, of course, so it shouldn’t be considered a sole source. But it can serve as a guide to navigating the tsunami of information on Google and other search sites, as well as the often confusing information that patients get from their doctors.

Here are three ways online patient groups can help:

1. Patient groups focus on specifics, not generalities. If you’ve got a sick kid, you want to get as quickly as possible from the generalities of “cancer treatment” to the specifics of “here are the three options to consider for my child.” A trip to the Association of Cancer Online Resources, an independent organization that sponsors cancer patient groups, led me to both a very active patient group on Hodgkin's lymphoma and the Pediatric Oncology Resource Center, a volunteer site that connects parents and other family members of children with cancer. Massachusetts General’s Brain Talk Communities is another example of a thriving online patient community that offers a wealth of information on brain cancers and other neurological disorders.

2. Other parents may know more about treatment options than your doctor. This sounds bizarre, but it’s true. Doctors are hard pressed to keep up on the latest in their specialty, let alone browse the literature for intriguing new treatment options and clinical trials. No one is more dogged in tracking down information than a parent whose child’s life is at stake. Many participants in online patient groups have become true experts in a disease’s symptoms and treatments. They are there to share that painfully acquired expertise, in the hope that your family won’t suffer as much as theirs did. They also can provide information–and reality checks–on alternative treatments, which most physicians don’t investigate. The Hausers are said to have delayed Daniel’s chemotherapy to investigate alternative cancer treatments.

3. Doctors often disagree on treatment. Other parents can help sort that out. Hodgkin’s lymphoma treatment is relatively straightforward and has a 90 percent success rate, but treatment options for other cancers aren’t nearly so straightforward, particularly if it’s a rare disease. Nothing can be more frustrating to a parent than consulting different eminent doctors, only to get completely different advice on treatment. Online parent groups are the ideal forum to weigh those options.

Ultimately, informed fellow parents act as a corrective to a healthcare system that is too big, too hasty, and too prone to potentially tragic errors. “In groups of hundreds of people, you can be sure that any misinformation will be caught within a couple of hours,” says Gilles Frydman, who founded ACOR in 1995 after his wife’s breast cancer was misdiagnosed. He has since become a national advocate for the power of patient groups to improve medical care. Surprisingly, research on online patient groups finds that their greatest benefit lies in providing accurate information, rather than emotional support. I expect the Hausers could have used both over the past few grueling weeks. And I hope that other parents will have the benefit of online parent experts when they face a devastating cancer diagnosis for their child.

• Related: When you need the best medical care for your child, check out America's Best Children's Hospitals.