BrainTalk Communities Inc FAQ

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What is the history of BrainTalk? What is the future?

My colleague Dr. Dan Hoch and I have been working together for many years on innovative solutions to healthcare communication problems. In addition to my work on BrainTalk, Dan and I work with patients in our Neurology Service in an online environment that lets them communicate with their healthcare providers.

What started out as a small project at Massachusetts General Hospital has grown into a thriving and successful community of thousands of patients and caregivers all across the world. BrainTalk is now the largest community of neurology patients and caregivers on the Internet. In fact, doing a simple search for the two words "neurology support" on Google brings up BrainTalk as the #1 hit out of about 2 million entries.

My ultimate goal is to see BrainTalk continue to grow and evolve, and for it to have a life of it's own as an organization. I plan on dedicating myself to BrainTalk indefinitely, as I feel it is the most important thing I have ever worked on, but I also want to guarantee that BrainTalk will continue to exist and thrive regardless of what happens to me in the long-term future.

Therefore, in March of 2004 I began to migrate BrainTalk *out* of Massachusetts General Hospital. I set up a new server in a rented office space, and started the process of setting up a separate business entity called "BrainTalk Communities, Inc." BrainTalk Communities, Inc. is now a 501(c)(3) nonprofit corporation with public charity status.

Currently, the BrainTalk site and all activities regarding BrainTalk are completely independent of Massachusetts General Hospital. BrainTalk is now a completely separate project, existing as a formal corporate entity. BrainTalk is completely funded by individual user donations and Google AdSense advertising.

Future efforts of mine will include the continual expansion of BrainTalk, supporting the growth of the forums and chatrooms, as well as exploring new Internet-based technologies to help patients and caregivers form online communities of support and compassion. I also plan to work on fundrasing and grant applications to provide BrainTalk with more revenue. Every day, more and more people register on BrainTalk, and the user base continues to grow geometrically. I will work hard to guarantee that BrainTalk will always be able to handle an ever-increasing population of patients and caregivers.

BrainTalk always has and always will be offered as a free and public service, available to anyone around the world in need of compassion and community.

It's been a long trip that started way back in 1993. In September of 2003 we were interviewed by a healthcare magazine and asked specifically about the BrainTalk Communities. If you'd like to read a bit about the history of BrainTalk, please read this transcript of that email interview:

------------------------- email interview, September 2003

Question: Why did MGH decide to start the neurology discussion forums?

John Lester: Back in 1993 when I started as the Information Technology director for Neurology, we created a website for the Department of Neurology at Massachusetts General Hospital that provided basic information about our department. The web was just starting out back then (this was before Netscape). We noticed that there were very few healthcare professionals using the Internet back then, but we found many patients and caregivers going online looking for support from other people in similar circumstances and to share information. These patients and caregivers were looking for places online to create communities, and we thought it would be a wonderful thing if our Neurology department could help them by providing a place for them to help each other. So we set up the first online forums back in 1993.

Dan Hoch: I'd add that from the beginning, John has tried to use any and all forms of technology to help the patients. The most successful has been a combination of bulletin board style discussion groups (not synchronous or "live") as well as chat rooms that give the ability to communicate with each other synchronously.

Question: I found three forums (AVM, Aneurysms, Proton Beam). Are there others? ((Dan: These are actually the neurosurgery forums, I think. Though there are parallel discussion in BrainTalk).

John Lester: There are currently over 250 different communities organized around specific neurological conditions, ranging from common conditions like "Multiple Sclerosis" to rare conditions like "Mobius Syndrome." The main URL to access the communities is www.braintalk.org .

Dan Hoch: Also, the growth in the number of groups has been due to requests, not our impression of what patients "need". If enough people contact john to tell him that they'd like a forum on a topic, he creates it. For example, a group within the epilepsy forum contacted us about starting a separate public discussion on activism in epilepsy, or epilepsy awareness. John set it up and about 20 or so users then went on to discuss projects and ideas as a theme separate from the general epilepsy group.

Question: Do other departments have discussion groups?

John Lester: Neurosurgery has online discussion groups, too.

Question: How long have you had the groups?

John Lester: Since 1993

Dan Hoch: note that the Internet was not widely known when John started the first of the forums. Dial up bulletin boards were popular then, and this served the purpose.

Question: What has been your experience so far - good and bad?

John Lester: So many people have been helped, and we know for a fact that lives have been saved because of the support people have received from other patients and caregivers on Braintalk.org. We constantly receive email from people about these positive experiences. Like any

community, sometimes people argue and common interpersonal conflicts can get carried away. But thats just part of being human! Fortunately, these things either correct themselves (tempers die down) or our volunteer moderators delete inappropriate messages until everyone calms down. Also, we've had some spammers wander in and post advertisements in different forums. But once again, volunteer moderators help a lot by deleting inappropriate things before it gets out of hand. Overall, BrainTalk is a dynamic and healthy online community of patients and caregivers offering each other support and compassion when they need it most.

Dan Hoch: There are some examples of good things that stand out. MS patients have used the chat function to support each other when self injecting interferon "live". They would all log on an talk through the experience with each other. In another example, I mentioned the epilepsy group that has facilitated increased epilepsy awareness by sharing strategies on line, then acting in their own community.

Question: What software are you using? Why did you choose it? Would you recommend it?

John Lester: We currently use Ultimate Bulletin Board from Infopop and a bunch of customized scripts I wrote myself. Were working on upgrading to a more powerful database-backed forum system such as vBulletin in the near future, since the forums are always growing.

Question: I see the groups are public and unmoderated. Have you had any inappropriate messages? How do you handle that? Is someone assigned to check on the discussion regularly?

John Lester: The groups are public, but they *are* moderated. We have volunteer moderators around the world who basically keep the peace and help moderate interpersonal conflicts and delete any inappropriate postings. But overall, the communities self-moderate a great deal. People generally know how to behave, and they encourage other people to behave properly.

Dan Hoch: We initiated physician sponsorship and moderation when the groups were originally formed. However, the task was not only overwhelming, but created a potential bottleneck for the users too. Also, having direct health care provider "supervision" would change the dynamic of the groups dramatically, and not for the better.

Question: How many users do you get per month? Do you consider that good/bad or neutral?

John Lester: We have about 50,000 individuals posting messages and about 200,000 individuals reading postings in the forums, with about 4 million page views a month. A LOT of traffic. And that's great, in our opinion. It's not unmanageable, and everything is split into smaller groups so people can easily find the groups they want to participate in.

Dan Hoch: The down side is simply the band width needed to support the effort. The costs of hardware and software are not that high. Even the time John has spent is not excessive with the self policing and volunteer moderators that exist. However, the amount of traffic would be prohibitive if not for the support of the hospital.

Question: What are the benefits for the hospital/physicians and patients?

John Lester: Patients receive compassionate care and support from other people in similar circumstances and they are plugged in to a global support community that can help them 24 hours a day, 7 days a week. The hospital benefits by providing a service that improves the lives of hundreds of thousands of people around the world. Physicians, if they participate in the forums, can learn a great deal about what patients and caregivers around the world need and what they think about their conditions.

Dan Hoch: The existence of forums like these (especially those not dominated by commercial interests and contaminated by ads, spam and the like) in concert with other electronic communication tools is profoundly changing the dynamics of the health care team, and the process of care. As John said, there is compassionate support, exchange of information, etc . But those interactions can also take place in face to face support groups. However, I think the 24 hour a day, 7 day a week, nature of electronic communication is QUALITATIVELY different and not just a difference in quantity of communication. It has greatly accelerated the shift away from the top down, paternalistic model of doctor-patients interactions. The health care team in this context is community based. Emotional support, health education and event he clinical decision making not the exclusive domain of the physician and nurse (probably never was, just seemed like it to health care providers). Even the concept of "patient" is no longer valid. Many of our users are MDs and Nurses, taking part as people with an illness, or who care for someone with an illness. I've seen a dramatic change in the way my patients interact with me, and with each other, that makes my life a lot easier as a doctor. Patients turn to me for specific needs, but I'm not the center of the universe and certainly not indispensable. This is probably a change that some of my colleagues will not accept readily.

As an aside, our experiences with this public community stimulated us to experiment with a closed community of our own patients. They now have a password protected, secure web site of there own where they talk to each other, have chat rooms, maintain a library, and exchange private messages with me and our nurse. In this context I can see very directly how the ability of patients to care for each other WITH my help is superior to the old system where I coordinated everything, individually and face to face (or voice to voice on the phone)..

Question: How are you measuring success?

John Lester: If these communities help to improve the quality of someone's life in the world, then they're a success. And based on the amount of email and feedback that we get, BrainTalk is a success thousands of times over.

Dan Hoch: I agree. Success can also be measured by the volume (hits, posts, replies, etc) and also by survey data. We've asked the users about their experience in a couple of different settings and also just observed the interactions. There is a significant increase in the reported satisfaction of the users as a function of their interactions with each other. A summary of these observations was recently submitted for publication but we've not heard back yet on the fate of the manuscript.

Question: Have you done any "live chats"? If so, what was your experience with them?

John Lester: Part of the BrainTalk communities is a chat system where patients can communicate with each other in realtime (synchronously). It has been as successful as the forums (asynchronous). Sometimes, people need the immediate connection with other patients and caregivers. Live chats provide that kind of immediate connection.

Question: What have been the drawbacks of operating the forums?

John Lester: It can take a lot of work keeping them running, especially with such heavy traffic. Software crashes, hardware crashes...and these people depend on these communities for support. It becomes a living, breathing online space that needs to be kept online 24/7.

Dan Hoch: Such communities are also charting new territory with regard to liability, "branding" and the publics perception of the mission of a hospital like ours. There has been a lot of time spent making our way through this new territory with the help of hospital administrators, lawyers, the marketing department, etc.

Question: Do you have any advice for other hospitals that might be considering discussion boards?

John Lester: Talk to people who have created and maintained online communities. Online communities, like ANY communities are extremely complex dynamic entities. To create and manage them, a person has to be part architect, part urban planner, part mayor, part anthropologist, part psychologist...etc. Just knowing how to technically install software is NOT enough to guarantee the success of an online community. Learn from people who have learned from experience. And realize that the most powerful thing in the world is our network of relationships to other people. By providing online communities, healthcare providers allow patients and caregivers to help each other help themselves and allow them to build support networks with people around the world. This can be an incredibly powerful method to help people improve their quality of life, which is the ultimate goal for all healthcare professionals.

Here is the current description of the BrainTalk Communities. It's a good summary of what exactly they are all about:

"The BrainTalk Communities are online patient support groups for people living with neurological conditions. They are also for anyone indirectly touched by these illnesses, such as loved ones, friends, and family.

These online communities are a place to find compassion and support from other patients and caregivers around the world. A place to share ideas, thoughts and feelings in a caring environment.

The Braintalk Communities are provided as a free public service by the Department of Neurology at Massachusetts General Hospital and are open to everyone."

Dan Hoch: I'd also add that one has to look deeply into the soul of the person or organization that is setting up such a community and discover the motives. I like to think that ours are true communities, largely because of John's insights and compassion. If that kind of a "noble" purpose is absent, the communities will be very different. Communities created with vague sense that it's good PR, or to have a place to advertise, would be very different, and I think inferior to, communities like ours. Our users frequently point out that similar experiences are not available from AOL, or other commercial vendors.

I was also interviewed by Dr. Tom Ferguson back in 2002. Here's a transcript of that interview.

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