More than sympathy: Patients find collective voice for advocacy

Online support groups are gaining influence beyond their original mission of providing a virtual shoulder to lean on.

By Pamela Lewis Dolan — Posted Aug. 6, 2007

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When disease-specific support groups started leaving church basements and turning to the Internet, members found a few sympathetic ears could grow into national or international communities several thousand strong. More members meant more power. And, ultimately, more power meant more action.

Over the past decade, online patient groups have evolved from large communities of people sharing a common disease to even larger communities sharing a common goal: to help spread awareness and support for the treatment and cure of their respective conditions.

The evolution of the Assn. of Cancer Online Resources has become a typical example of this trend.

ACOR was founded in 1995 by Gilles Frydman after his wife, Monica, was diagnosed with the ductal carcinoma in situ type of breast cancer, shortly after recovering from a rare heart disorder.

Not satisfied with the answers his wife's doctor was giving them, Frydman turned to Internet groups for information. The groups he found convinced him that his wife needed a second opinion and also helped him find a new doctor. But, he found that navigating the boards was difficult and cumbersome. The idea of ACOR was to provide one-stop shopping for every type of cancer support group.

Now, due to its amplitude, ACOR has evolved from a patient resource to a source for researchers looking for clinical trial subjects; a directory of specialists, complete with firsthand critiques; and a large collection of cancer information and research. The group is now moving into fundraising.

Each online patient community has its own story. For patients with rare conditions, online communities may provide the only outlet to connect with others like them. Not only do members benefit from a wisdom-of-crowds perspective, but together they can become the loudest, and sometimes the only, advocates for more disease-specific research.

The influence and reliability of some sites has grown to such a degree that doctors sometimes rely on the sites for information.

The first place a newly diagnosed cancer patient turns to for advice and help finding the best doctor is often ACOR, Frydman says. It has become the largest online cancer information repository, with more than 160 groups representing more than 55,000 members. The group has been responsible for connecting thousands of patients with the best specialists available to treat their specific cancers.

The group will also warn patients away from some physicians. "It's terrible if you are a mediocre doctor, because ACOR will be your worst enemy," Frydman said.

Frydman credits the online community for saving his wife from a doctor who, immediately after diagnosing her, wanted to perform a mastectomy and a lymph node dissection in addition to chemotherapy. A doctor he found through an online community connected Frydman's wife to a doctor in New York, where they live, who specializes in ductal carcinoma in situ. Frydman credits that specialist with saving his wife's life while avoiding all the surgery.

Patients can find doctors, but doctors are also finding patients through ACOR.

"Almost from the very beginning, the presence of some of the best specialists realized the power of these groups," Frydman said. "Many of them know these groups, for rare cancers, are among the best places to recruit people for a trial."

A pharmaceutical company recruiting patients for a clinical trial expected to take three years to recruit enough subjects. But after ACOR members posted information about the trial in their various groups, the company was able to finish its recruitment within six months. More than 80% of the participants were found through ACOR, Frydman said.

Other patient groups have used their collective power -- and pocketbooks -- to make research possible.

Keith D. Lindor, MD, professor of medicine and chair of the Division of Gastroenterology and Hepatology at the Mayo Clinic College of Medicine in Rochester, Minn., has been involved with support groups for people with primary sclerosing cholangitis and primary biliary cirrhosis -- and their caregivers -- for about 15 years.

Because PBC is so rare, few drug companies want to foot the cost of research, Dr. Lindor said. "The PBCers have taken the bull by the horns and have taken on the cause directly."

These patient groups may be the best place to find information on these relatively rare liver diseases. Dr. Lindor said he would feel confident sending patients to the PBC site or the PSC site to learn more.

The PSC and PBC groups each have grown so large that they organize their own conferences, at which Dr. Lindor is often asked to speak. The groups also publish informational materials, which he is often asked to proofread.

"It's exciting to see the evolution from simply a support group to a reliable source of information," Dr. Lindor said.

The physician's role

As online patient support groups grow, the question has been raised as to what physicians' roles should be, or whether they should even get involved at all.

Psychiatrist Harry Croft, MD, medical director of, an online patient group for mental illnesses, said he thinks doctors are the key to groups' continued success.

For many reasons, patients don't always ask their doctors all of the questions that are on their minds, Dr. Croft said, so they turn to the Internet.

"There are some crazy sites out there," Dr. Croft said. But some groups have become reliable sources, because the members are passionate about the topic at hand and immediately will challenge questionable information.

Even physicians who are not psychiatrists have turned to HealthyPlace for information, Dr. Croft said. With a large percentage of psychotropic medications prescribed by non-mental health professionals, insights from other patients can help doctors learn more about the drugs, such as side effects and reactions, Dr. Croft said.

For example, many of the psychiatric drugs have side effects that last only for the first few days. But if doctors don't know this and don't warn their patients, many patients simply will quit taking the drug, assuming the side effects are permanent, according to Dr. Croft.

Dr. Croft said the more physicians are involved in Web site content, the more reliable that content will become.

Medicine-driven sites

Some physicians and hospitals are starting their own online patient support groups. The Indiana University Surgical Weight Management Center at Wishard Hospital in Indianapolis, for example, is developing an online group for bariatric surgery patients. The site is expected to launch later this year.

Elisha London, a dietitian at the center who is involved with the site's creation, said she liked the idea of a hospital-sponsored site because the validity of information can be assured. On other sites, she said, posters have offered tips on how to cheat on postoperative diet plans.

Staffers plan to monitor the Indiana hospital site daily, London said, and will delete posts as needed. Posters also will be able to ask the staff questions directly through the site. In addition to the message board, the site will have a place for users to exchange approved recipes.

But depending on the kind of support group, physician involvement is not always necessary, or desired, said Kate Lorig, RN, DrPh, director of the Patient Education Research Center and professor of medicine at the Stanford University School of Medicine in California. She has researched how online support groups impact patient outcomes.

Dr. Lorig said the reason online support is so effective is that, when asked, patients say there are two types of learning: from health care professionals and from each other. "We don't give patients the opportunity to learn from each other," she said.

While some health professionals are amazed at the role these groups have taken on, most believe they will continue to evolve. For example, some patient-written wikis are starting to pop up. A wiki is an open-source Web site, built on the wisdom-of-crowds theory. Anyone can add, remove, edit or change content. ACOR has three wikis and plans to add more.

Dr. Lindor suspects online support groups will play an even more important role in research. With budgets being cut from major sources of research -- the National Institutes of Health, teaching universities and pharmaceutical companies -- he sees support groups increasingly supplying not only test subjects, but funds.

Frydman agrees that patient sites have allowed more people to rally around the causes.

ACOR soon will launch a branch devoted entirely to raising research funds for a rare type of cancer.

"We'll try to bring everyone together instead of having groups fighting; it's much better if everyone works together to raise funds," he said.

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Impact of e-information

Pew Internet & American Life Project reported in a study released last fall that 80% of Internet users have searched for health information, a percentage that has remained stable for four years. The study looked into how online seekers used information they found.

Online information affected a decision about how to treat an illness 58%
Information changed users' overall approach to maintaining their own or someone else's health 55%
Online information led users to ask a doctor new questions or seek a second opinion 54%
Online information changed the way users cope with a chronic illness or manage pain 39%
Information seekers who felt reassured that they could make appropriate health care decisions 74%
Seekers who felt relieved or comforted by the information found online 56%
Seekers who said they were eager to share their new medical knowledge with others 51%

Source: Pew Internet & American Life Project report, "Online Health Search 2006," based on findings of a survey conducted through telephone interviews from August 1-31, 2006, among a sample of 2,928 adults 18 and older. Margin of error for Internet users surveyed: 3 percentage points

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How discussion groups affect outcomes

A study published in the Archives of Internal Medicine in 2002 found e-mail discussion groups had a positive effect on the health status of those experiencing chronic back pain. The study also found possible reductions in health care utilization. Percentages represent 12-month changes.

Discussion group Controls
Health variable
Disability 27% lower 16% lower
Health distress 35% lower 22% lower
Pain interference 38% lower 27% lower
Self-care orientation 9% higher 4% higher
Self-efficacy 9% higher 2% higher
Utilization variable
Physician visits 63% lower 34% lower
Chiropractor visits 36% lower 21% lower
Physical therapy visits 60% lower 45% lower

Source: Archives of Internal Medicine, April 8, 2002

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Patient blogs assert power, too

Support groups aren't the only online places that are evolving into vehicles for fundraising and research of specific diseases. Blogs originally meant for family and friends of those with a disease sometimes draw in others to rally around a cause.

Todd Whitley, vice president of e-marketing for the Leukemia and Lymphoma Society, said a recent "grassroots guerrilla marketing" campaign experienced success when the society took its message to bloggers.

The LLS was raising funds for its Co-Pay Assistance Program, which helps patients with out-of-pocket drug costs. It sent out promotional blurbs to several bloggers, which were picked up by other bloggers. A traffic analysis showed the highest traffic to the LLS's donation page was coming from blogs. Five weeks after the initial messages were sent, the blogs were still generating donations.

A variation of blogs is CaringBridge, which allows patients to connect family and friends through private, password-protected Web sites.

Sona Mehring, founder and executive director of the 10-year-old site, said a small percentage of CaringBridge users use their pages to generate buzz for their cause, but for the ones who have, it's been quite effective.

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External links

The Assn. of Cancer Online Resources (link)

PBCers Organization, for those with primary biliary cirrhosis (link)

Primary Sclerosing Cholangitis Support (link)

PSC -- Partners Seeking a Cure for primary sclerosing cholangitis (link)

HealthyPlace, a mental health support site (link)

CaringBridge, which helps people create sites (link)

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