I Get By With a Little Help from my Friends

This post is written by Dr Richard A. Lawhern Ph.D., site moderator, content author and Resident Research Analyst with “Living With TN”, an online community among Ben’s Friends. He is the spouse of a trigeminal neuralgia (TN) patient who has symptoms of both typical and atypical forms of this disorder, with pain on both sides of her face. Since 1996, Dr. Lawhern has researched and authored multiple on-line articles and websites on behalf of chronic face pain patients, corresponding with over 3,000 patients, family members and medical professionals.

Healthcare online

It is justifiably said that we live in an “Internet Age”. It’s even been suggested that the rapid connectivity and easy interaction of the World Wide Web have irrevocably changed western and world culture. Having worked and taught in the Internet environment for over 20 years, I would agree. Such changes are nowhere more evident than in healthcare. People with medical issues and concerns are talking to one another, even before they talk with a doctor. As witnessed by RxISK Stories and David Healy’s Blog and many others, this trend is becoming true of mental health as well.

I wrote of this trend in a 2012 article titled “Demographics of Neurological Face Pain at a Social Networking Website”. [1]

According to the Pew Internet and American Life Project, [2] “Serious medical emergencies cut across all demographic groups [in the US] and seem to bump up interest in online health research. Fully 85% of internet users who experienced a recent medical crisis say they look online for any of the health topics named… [high blood pressure, heart conditions, lung conditions, diabetes, and cancer], compared with 77% of internet users who have not had that experience in the past year.”

I’ve observed that this trend is still growing and even more prevalent in more exotic and unfamiliar medical problems. Though people search the Internet for information about medical treatment, they also increasingly rely on the Net for personal and community support in chronic life conditions. A Google search in March 2014 turns up 7.3 million hits on the phrase “support group.”

Support groups come in all sizes and shapes. Larger information and discussion forum sites such major disease associations, Web-MD and Medscape are advised and supported by boards of medical professionals. But a significant majority are created and operated by patients or former patients who are lay people, self-studied in their own medical or mental health concerns.

Online support can be especially important for people with relatively rare or complex disorders that few doctors see on a regular basis – and which many doctors do not recognize when they see them. The US National Organization for Disorders (NORD), lists over 7,000 diseases which affect more than 30 million Americans – an aggregate larger than the number of US cancer patients. Although a rare disorder is defined as a disease affecting fewer than one in 2,000 people, the number of rare disorder patients worldwide is estimated at over 350 million.

Patient support groups often have a common history and motivation, even when they address very different issues. The online communities of Ben’s Friends illustrate these common threads.

Ben’s friends

In 2006, a 29 year old MBA student at Northwestern named Ben Munoz suffered a stroke caused by a cluster of veins and arteries in his brain, called an Arteriovenous Malformation (AVM). Although Ben got treatment, he also found himself almost alone during recovery, trying to understand what had happened to him and how it might affect his future. He looked for other patients — support groups in Chicago and Houston, everywhere on the Internet, but could find nobody who reported experiences like his. He finally decided to start a site of his own, figuring, “if I can’t find them, maybe they can find me”.

In 2007, Ben founded AVMSurvivors.org, which would become the first of a list of on-line patient-to-patient communities. Soon dozens and then hundreds would find Ben’s group and join. In 2008, Ben’s grad school classmate and good friend Scott Orn saw the potential power of Ben’s online support community. They created two more: LivingWithTN.org and LivingWithAtaxia.org. They also created an umbrella group called “Ben’s Friends” with the mission statement of ensuring that everyone in the world with a rare disease has a safe place to go and connect with others like themselves. Their goal became to make a positive difference in the lives of members every day.

By March 2014, Living With TN had grown to over 5,100 members in 117 countries. Ben’s Friends now serves more than 40,000 members in 35 online communities, with several groups in formation. The communities are supported by 150+ volunteer moderators, many of them patients. The organization has been featured in or partnered with Seth Godin’s book – Tales of the Revolution – National Public Radio, Extole, Pay It Forward, Brown Alumni Magazine, Disability Digest, Harvard Business Review, Forbes, Techcrunch and others. In 2014, Ben’s Friends qualified under US tax laws as a 501(c)(3) Non Profit Organization (NPO), opening further avenues for corporate and foundation support and mission expansion.

Many member activities are supported among Ben’s Friends communities. Patients and family members can access research in authoritative papers and articles written for the site, as well as off-site resources. Discussion forums offer both a timely venue for general questions and concerns, plus thousands of searchable member postings. Member Groups are forums for discussion of specific questions. In member pages, members describe themselves, their experience and their concerns. Blogs provide a record of daily life and learning. Patients meet in real time chat rooms to vent, ask questions and share experience in real time – and sometimes to grieve life losses with others who understand their painful journeys from the inside.

Common member concerns may include:

• “I’m having horrible stabbing pain in [location]. Does anybody know what this is?”
• “My medication has stopped working and my GP doesn’t know what to do. What are my options?”
• “Where can I find a doctor who understands my symptoms?”
• “How can I resolve conflicting diagnoses?”
• “My doctor thinks my pain is caused only by my stress. How can I force him to remove that nonsense from my medical records?”

Members of online support communities often profoundly benefit from their participation. We hear messages like “I am so grateful to learn that I’m not crazy”; “I’m no longer alone”; “I have learned so much here”; “People on this site knew more about my disease than my doctor.”

A community collaboration

The latter observation provides an insight into the contribution of moderators. On most social networking sites, almost nobody is a doctor. Moderators ensure that members are aware of the limitations and uncertainties of recommendations offered by others. They also weed out spammers, doctors or lawyers trolling for patients, illegal or controversial and unproven treatments, and highly polarized people who think they have found “the” answer and will respect no other opinion. But support sites are about the members, not the moderators. The model is collaboration, not authority or control – a model profoundly different from much of mainstream medicine and mental health. Doctor-patient collaboration and mutual learning are the model of the future. And Ben’s Friends are pointing the way.

As a 19 year old Lupus patient phrased it to me, unknowing of the association, “I get by with a little help from my friends.” And as a footnote, Ben Munoz is now at Baylor Medical School, training to become a doctor to the patients he has helped to find each other.

References

[1] Richard A. Lawhern, Ph.D., “Demographics of Neurological Face Pain at a Social Networking Website”

[2] Pew Internet and American Life Project, “Who Gathers Health Information Online? — Profiles of Health Information Seekers“, February 1, 2011.

[3] Pew Internet and American Life Project, “Who’s Online? — Demographics of Internet Users”