Getting a Second Life—in an online health community

A few weeks ago, I was invited to the home of a patient with multiple sclerosis (MS). Dressed in a belted black suit with a chic pink scarf tied around her neck, Kat es corted me into her cabin.  The room was warm with soft pillows, Native American artwork and colorful Southwestern carpets. A fire was crackling in the stone hearth and incense was burning nearby. I sat down on one of the mats arranged in a large circle. Soon, twenty other members had joined us, one in a wheelchair, and all dressed with   flair. Wearing a T-shirt and blue jeans, I stood out as the newbie. Although I had attended quite a few support groups over the years—many of them online—none had prepared me for this mind-bending experience. It was my first day at Second Life, a three-dimensional virtual community, and on my computer screen, my avatar self was still learning how to walk and talk.

Launched in 2003, Second Life has a medical facility built in partnership with Cisco, and a Virtual Healthcare Island created by IBM. As of April 1st, the site had over 6 million unique registered users, 50,000 to 60,000 of whom are online at any given time. At Second Life, real physicians collaborate on research projects, medical students receive training, and robust health information libraries are staffed by professional librarians.

On my second day I attended a stroke lecture given by Lawrence Whitehurst, MD, FAAFP, a family practitioner and founder of the Second Life Medical Association (SLMA). It included a thorough discussion of warning signs, risk factors and treatment, and was quite similar in content to other talks on stroke prevention that I had been to in the past. Instead of receiving questions from a live audience, Dr. Whitehurst fielded multiple instant messages asking questions like: Is an aneurysm a type of stroke? What is termed a stroke rather than a TIA (transient ischemic attack)? An Ob/Gyn physician inquired, "So what are the latest thoughts on risks related to the oral contraceptive pill?"

Since the SLMA has not attempted to verify credentials of people behind the avatars, they have no idea how many real-world physicians, nurses or other health-care professionals are members. Dr. Whitehurst doesn't attempt to diagnose or treat in Second Life. When requested, he offers general advice and education to groups and individuals without charge. Specific medical problems are discussed with the goal of helping folks understand the nature of their condition, and directing them to real-world health providers.

Medical advice online?

Whereas Second Life is the newest generation of online networks there are quite a few traditional online health communities too. Most sites are divided into groups by health condition where participants range from the newly diagnosed to longtime patients who often have a sophisticated level of understanding of their illness. I've seen new advances shared almost as soon as they hit medical journals and study results posted as early as the clinical trial phase.

Queries on how to handle symptoms, reactions to medications, family issues, and other practical matters flood the discussion boards. Of course, inaccurate or outdated information is also exchanged, but I’ve been surprised at how quickly and how often expert "e-patients" jump in to correct errors. When someone at the MS support group wrote that his doctor was treating his MS by "killing yeast in the blood," several members suggested he seek a second opinion, and the group moderator, Kat, offered him a note card explaining MS.

And although some physicians may cringe, it's not unusual for diagnoses to be suggested that turn out to be correct. "When patients managing the same chronic condition share observations with each other, their collective wisdom can yield clinical insights well beyond the understanding of any single patient or physician," points out The Wisdom of Patients: Health Care Meets Online Social Media in the April 2008 California HealthCare Foundation ihealth report, written by Jane Sarasohn-Kahn.

In addition to providing educational resources, members of these sites offer empathy, understanding and hope based on shared experience. By exchanging personal stories, they also develop close friendships across the globe. Attending the MS group, were members logging on from Denmark, Ireland, England and the Netherlands. Anonymity makes no question too minor or too embarrassing to pose. The supportive responses are one reason many come back.

Other online health communities

PatientsLikeMe.com, initially created as a Lou Gehrig's disease (ALS) community, has developed a way for patients to easily find others with similar profiles. Detailed descriptions allow them to pose questions to members with specific symptoms or those taking specific medications and even discuss outcomes together. The site, which has grown to include five chronic disease communities—including MS, HIV, Mood disorders, and Parkinson’s disease—currently has over 14,000 members; over a recent 24 hour period there were over 8,000 views of other registered patients. The Association of Cancer Online Resources, supports a large collection of cancer-related mailing lists broken down by type of cancer. In a recent week, it delivered over a million and a half emails across the globe. For those too ill or disabled to attend conventional support groups--these sites and others like them provide a welcome alternative.

It's no wonder that these e-communities have taken off so rapidly. As of January of 2008, the Internet shares the number one position for leading source of health information with us docs!

Kat, who used to ride horses regularly in her real life, is now wheelchair dependent due to the rapid progression of her MS over the past seven years. Her online support group has grown to about 100 members including Gentle, who had been a symphony musician before she was diagnosed. No longer able to play the viola, she now provides training to people with disabilities who want help navigating Second Life. The group also includes Rolle whose mother has a progressive form of MS but had refused medical care. Through her support group, Rolle has gained a better understanding of the condition and has convinced her mother to see a neurologist.

A recent Washington Post article about their group attracted Nick, who is quadriplegic from a rare form of muscular dystrophy. Along with Kat, he co-founded Open Gates Peer Support Community, a 24/7 hot-line where people can come to talk, vent, and get help finding real-life resources. Unable to breathe without a ventilator, Nick has become quite an activist on Second Life, where walking is a breeze and he can dance up a storm.

—Orly Avitzur, M.D., medical adviser to Consumers Union

Comments

[Paul Richard]

Association between prevalence of low white blood count in women of African descent(ScienceDaily, September 24, 2008). Please provide more information regarding this subject.

[Amir Avitzur]

This sounds like the pilot episode of Star Trek ("The Cage").

[Mike]

Is it safe to take zocor and tricor together?

[Carol Perryman]

In Second Life, I am Carolina Keats, coordinator for Healthinfo Island, and a 'real life' medical and consumer health librarian. I'm so pleased to see this positive coverage of virtual health support activities, and wanted to address the issue of trust in such environments.

We do not have the normal means to establish our authority as experts (no embodiment of authority in the form of a large building; no diplomas, no shiny equipment; no echoing halls or overhead calls for 'Dr. so-and-so'!), so must give attention to others. Examples of this are providing real names and email (as I do), and using this opportunity to talk about critical evaluation of health information. I have had individuals whom I've helped tell me later, 'I Googled you - you're for real!' - and after being momentarily taken aback, I realized this is the exact behavior I work to encourage in projects associated with Healthinfo Island.

In fact, I consider that health information literacy's goals include a critical, questioning attitude toward information provided through any channel. If we are working toward a place where the ideal relationship is one of collaboration between patient and physician, then evidence of efficacy, decision making about treatment, and more, are elements for consideration, opportunities for learning, and should be verifiable.

My observation of people in support groups on the Web has been that learning and assessment of information is not always accepted without question: often, there can be a rich discussion about preferred resources, with people pointing out why some remedies, for instance, are questionable. I consider Second Life and other virtual communities, to be important opportunities for exploration of important questions such as the validity of health information, and for building new connections between people.

[Susannah Fox]

Thanks for synthesizing your observations & findings in this article! And thanks for the link to the "E-patients With a Disability or Chronic Disease" report. I thought your readers might be interested in the conversation happening at e-patients.net, particularly this post about how e-patient stories seem to fall into two categories: where doctors were helpful supportive partners, and where they were anything but:

http://www.e-patients.net/archives/2008/06/epatient_storie.html

[Dick Dillon]

Thanks Orly, for drawing attention to the interesting things being done on the healthcare front in the virtual world, Second Life (R). You correctly identified two of the big issues that are a part of this form of "healthcare". There is an incredible amount of peer support and advice, with many organized group such as the ones you mentioned, along with groups like Alcoholics Anonymous and support for those dealing with Asperger's disorder. There is also a lack of credentialing for practitioners, and of course licensing and certification boards may take a while to catch up with this technology.

Representing my organization, in Second Life for the past 15 months, I have discovered another very positive attribute of the virtual world. The opportunity to collaborate with colleagues from around the world, in a 3D immersive environment, with essentially no overhead costs, is invaluable. No airfares, no hotel bils, no meal costs, yet I have met professionals, not just in my chosen field of mental health and substance abuse, but virtually all branches of healthcare, from around the world.

As you might expect, these are people who are vitally interested in exploring the potential to improve everyone's health of not only virtual worlds, but other digital tools.