1997 Partnerships for Networked Consumer Health Information Conference
Transcripts of Plenary Sessions and Breakout Sessions
Post Conference Workshop A
Online Self-Help Groups and Their Professional Allies
Thursday, April 17
Tom Ferguson, M.D., Senior Associate, Center for Clinical Computing, Harvard Medical School, Austin, TX
Arlette Lefebvre, Founder and Past President, Ability Online Network, Toronto, Canada
Ferguson: This workshop will deal with online self-help groups and their professional allies. How can we link this resource (online self-help) with our formal professional health care system? Making this connection is a task that is left to the individual. Health professionals don't know that patients are taking advantage of this resource and are not aware of its positive results.
I first heard of Glena online because she had cancer. She started a self-help support group, which consisted of about 23 people, all with cancer. Glena called it "Living With Cancer Fun Group." Welcome to fun time, jokes, and teasing. This support came from people who were living with cancer who are not living today. Glena would greet each person as they came online. At first it was hard because everyone wanted to send messages, or maybe I should say everyone wanted to type at the same time, and that couldn't be done. Eventually some order came to the group, and it became an important support group.
The conversations were between this group of people telling each other their conditions, diseases (what type of cancer they had), treatments, their feelings, their outlooks, etc. One person would say humor feeds the soul; one would tell Glena she had a radiant personality and Glena would say, "After all this radiation treatment I am radiant." One person asked if she glowed in the dark. Glena answered, "I glow all the time."
More and more people are getting involved in online self-help support groups -- lay people as well as health professionals. Patients get much more from these supportive networks than they get from health professionals. They get the specific health information that you might not get from health professionals, practical advice to guide people through a wide range of information, tips from people who are familiar with the health problem, live chats, humor, friendship, caring -- and most of all -- acceptance.
I would like to leave you with three questions:
Edward J. Madara, The American and New Jersey Self-Help Clearinghouses, Denville, NJ: What can online self-help do? I want to give you a glimpse of what is happening online.
I started my self-help group by giving medical information to people with general medical problems such as diabetes, cancer, or the flu. I started by sending and answering e-mail messages and sharing the information with other people. Now we have support groups for people with any health problem -- alcoholism, phobias -- and we even have Alcoholics Anonymous meetings online. These online self-help groups provide hope and a variety of other support mechanisms. It is an excellent way to exchange information. There are LISTSERV and mailing list services. I will now turn this presentation over to Laurel Simmons.
Laurel Simmons, Founder, Bone Marrow Transplant Mailing List, Cambridge, MA: I had a bone marrow transplant some years back, and that is what motivated me to start this organization. I would like to tell you a story and read a little from an e-mail message I received from a donor. She contacted us anonymously and wanted to donate bone marrow to someone. She found a recipient and had the transplant. She says it was a 5-6 match, which is normally found in family matches only. She did not know the person and had never met her. After the transplant the donor said she felt overjoyed.
Anonymous donors have a strong presence on the Internet. The Internet enables people with bone marrow problems to get answers to questions like, "If I have a transplant, how much blood will I lose?" "What kind of anesthesia should I have?" Online support groups enable people to articulate problems. Some people have trouble talking about their problems and in asking questions; they break down barriers for people who just want to come online and listen. The only barrier may be some patients lack of access to computers.
The Internet gives patients the capacity to ask routine, basic questions that they might not feel like asking their health professionals, and it enables them to get a variety of opinions and related stories from a person with the same health care problem. It helps relieve the anxiety and anger; enables a person to tell his or her feelings or moments of joy at any time, day or night; and it provides a captive audience. It also enables people to interact (you tell your story and hear someone else's). The Internet can provide new choices in health care, such as enabling patients to become the providers of care by giving them options to select from -- like choice of anesthesia or choice of a particular type of medication. One person relates how she reacted to certain medications and a certain type of anesthesia, which may help another person with the same illness who is trying to make a choice. Known bad consequences are better than unknown bad consequences. Acquisition of information relieves suspense from not knowing.
Having mailing list services or self-help group support services on the Internet helps patients who are not willing to articulate their feelings. It gives them the ability to deal with a narrative of their illness and transmits medical information from patient to patient.
What I would like is to make computers accessible to seriously ill patients and families of seriously ill patients. I would also like for them to be utilized by doctors and nurses, so they can take part in and help support the self-help groups -- and so they can better understand that they should and can work better with their patients.
Madara: I will now introduce Samantha Scolamiero, who will speak about her organization, Brain Tumor Mailing List.
Samantha Scolamiero, Founder and Creator, Brain Tumor Mailing List, Cambridge, MA: I will begin by saying I have brain damage, so I carry an extra brain around with me. For the last couple of days this has drained me, so please bear with me. I really need my second brain today.
I founded a brain tumor mailing list service. It is done by e-mail, which has low cost. Brain injury is very hard to deal with; it is a struggle for me to be here and to get my presentation together.
I will start by saying institutions learn from data, their knowledge base is limited. The Internet lets you be who you want to be. Things that can be provided over the Internet for self-help health care support groups are medical software, dissemination of materials, and health forums. The online support benefits are it:
Brain mail list was created by patients, and it will be more useful if it remains under the ownership of patients rather than being dominated by health care professionals. I started this in 1993 because no one else was doing it. It is more effective than pen pal programs and more efficient than newsletters. Online is the best service I have ever seen; the electronic community has the greatest value. It does not dehumanize; it is changing the community for the 21st Century and creating many allies.
Madara: Self-help onliners can truly help people with health care problems. I would like to share with you an e-mail letter I received. It was from Robin, who was a diabetic and was having trouble adjusting to the insulin she was taking. She sent e-mails and soon learned about other types of insulin and their side effects. She is now on a type that does not create any adverse side effects. She has become an online self-helper and says she enjoys this role because she wants to give back what she received. Now I would like to introduce Todd Woodward.
Todd Woodward, Depression Self-Help Group Leader, America Online, Santa Clara, CA: I don't want to talk about marketing or about how I am a group leader today. I want to talk about community. Have you ever awakened in the morning and just not wanted to get up or go to work? Who do you talk to? Your doctor? No, he will give you some rare facts about mood disorders and give you Prozac. Friends will say you have the blues. You just don't want to talk about it.
When someone has been diagnosed with a condition that they don't want to talk about, or they now have to take Prozac, which is not something you want to tell everyone, who do they talk with? Try using the computer, e-mail, news groups, or a bulletin board. That's where I was at one point in my life, wondering who I was going to talk to. But at America Online (AOL) I started a group called Depression Support. People showed up and started talking about being depressed. I, like others, was curious as to what was happening to me, and being online helped me as well as others to learn quite a bit.
I would like to relay a story about a person who was feeling very suicidal. I got these two people together online, and they are now talking and lifting each other up. They don't feel alone or desperate; they are now among people who absolutely understand what is going on. What do I do? I bring people together so they can talk to each other. Basically, I bring a community of people together who understands each other; they have the same health care problem. They can communicate with someone about their condition, their feelings, etc. Mental health issues are especially hard to talk about. I bring people together to deal with mental health issues in Online Psych. I help people to feel better about talking about the medications they are taking, which is something they need, because that medication has created negative side effects.
There is the traditional model of group therapy, and this is where there is room to move.
We're not talking about technology; we are talking about people getting together and sharing information. The doctor does not know how to cope, and people do. They can share together. I can talk about technology all day, but I won't understand the problems completely. Communities are the important aspect, and they bring people together. Our society is changing, and we don't have time to talk as we work 15 hours a day. A great advantage of the Internet is that we can get online at any time of the day.
With AOL, there are keyword searches, and from these searches, you can find online help. Be warned that it is all very commercial at times, and can be there to make money. "Health Live" is the index of all the different groups on AOL. I have started a master schedule of all the self-help schedules that are online. They don't have some listings, so I am the only one that has made a master schedule. They don't list unsanctioned groups. "Better Health" deals with some issues, and I moved to Online Psych, as it deals with more issues. AOL is easy to get into, and that can make it bad, jokingly. It is easy -- my mother is even online! It costs more, and technology isn't always there for people, but it is easy to get around and get things done on AOL.
Eventually we are getting more opportunities to plug into the Internet. We have companies like Netcom and Pipeline, making it even easier to get online. You should be able to get more access to the Internet. Thank you.
Madara: The father of sociology did a study, and he attributed suicide to "lack of community." On another note, I enjoy helping people so I interact with them most of the time. We have brought on many different volunteers where I am, and I needed help with a wheelchair patient. I got online, and I asked the question, "What do we do?" Within three hours, I had three different messages from people offering different techniques. We will conclude this panel with a physician, Dr. Alan Douma, who will tell stories that have been generated there.
Allen Douma, M.D., Health Responsibility Systems, Herndon, VA: Thank you very much, particularly Tom. I want to apologize for Elin not being here, as she is more important to hear than I am, and she is the founder of the Major Medical Network. I need to know if you can help me -- how many here are health professionals? Do you provide personal health care? How many work for a larger university, agency, or organization for health care? The good news is that Elin is meeting with investors today, helping us pay for our move forward.
I am a practicing physician now, but I was trained as a computer nerd in the 60's. Paradoxically, I have found that computer technologies deliver the most humane systems, despite the fact that there is no real human interaction. I will give a couple of quotes: "I sat here, reading the posted notes, and I wished that we were all neighbors. I was not alone dealing with my child with juvenile rheumatoid arthritis. I now know that it is not only me who feels left out in having to deal with this disorder. I cried and cried."
The Major Medical Network is working with many different challenges, whether they be online support persons or physicians. However, the community is what it is all about. We facilitate that community at the Major Medical Network.
What is online support? It is the live mutual support groups. We are now maxed out at 48 groups, and we are getting the software to support 100. In addition, you need to recognize that the support goes on with posted messages. Message boards meet 7 days a week, and we can deliver more information just by running groups through the message board. We have 2,500 medical topics that we can provide information on 24 hours a day. We also have facilitators running the group who themselves understand the problems but are not necessarily health professionals. There are little group facilitators as well with e-mail -- half of the e-mail on CompuServe is support group related. We even have interactive talk function as well.
In 1993, there were four online support groups, and early in the year, we were getting about 10 messages a day. We were ecstatic at receiving a message every hour. We now run 60,000 to 100,000 messages a month, and we read all of them. Go online and read if you want to learn something. If you really want to know what is being said, go online. It is all there, whether it is on the page or archived.
The community is very supportive of it, as it is easy to use and because of the growing perception that we need to get out of normal health care delivery. Therefore, tremendous growth is going on. Part of that growth is a reflection of the outcome. What is important to me is the outcome of peoples perceptions. If they feel better, they are better. Health care is first about relieving problems, and second about prolonging lives. Perception is a major part of delivering the proper health care.
We did a survey, and we got thousands of responses. There are questions related to self-help. Here are a few of them:
The proof is in the pudding. I would like to take a couple of minutes to talk about where it all goes. There is the same exponential growth curve as is seen with the elderly who are now going online. My mother has Alzheimer's and is in a mental institution, but if she could have, she would have lived online. If we can deliver, if we are greedy, or if we are graciously giving, patients will still need to find a place where they can trust and respect. They need to have easy access and easy use, and we need to support these needs. Private initiative is clinically important. We also need to subsidize the delivery of these services to these people and satisfy their need for protection.
Audience: Are there other groups outside AOL and CompuServe?
John Grohol, Psy.D., Director, Mental Health Net, Dublin, OH: We will be talking about this more. I have a list of all groups on the Internet.
Audience: News.answers [on USENET] has all kinds of information about LISTSERVS that are available.
Audience: Is your LISTSERV available to the public?
Douma: No, not right now.
Audience: About community, what happens when people on the list die?
Simmons: The only thing that the Internet does not allow us to do is to grieve, and that is its downfall. On one of my first lists I had someone die. There are services, but nothing like a memorial service.
Lefebvre: I am a psychologist, and we learn that people grieve all the time. Once, we received 102 messages; they were a sort of memorial service.
Audience: Two quick questions. What is the average income of the subscribers, and how do we assure that the messages are not reached by "techies" and students who are simply doing research?
Douma: Private messages cannot be read by anyone. With public messages, while there are employees with access, there is no way to secure them. I would say the average AOL income is about $55,000. We have some skewed data with low household incomes reflecting the medical disabilities.
Scolamiero: I was not able to get on the Internet as I couldn't afford it.
Madara: One last question please.
Audience: To the people who are involved with this -- where would you like to see things go in the future?
Douma: I would like to see more community control. The universal access is terrible, and there is a need to foster the help of health care professionals.
Ferguson: Again, we have a small group so we can network with each other during the breaks.
Linda Adler, Ph.D., Interactive Technologies Initiative, Kaiser Permanente, Oakland, CA: I come from Kaiser where we are developing a web site for self-help groups. We have a huge membership community, and our members are used to being a part of that community. We have group visits as well -- something neat and exciting where health care providers can come and see people in a group, and they spend 3 hours with the group. As a whole, Kaiser Permanente comes from a strong sense of community. The electronic medium is an outbreak for the community.
Samantha's earlier comment that "We are watching you" does not relay the spirit in which we edit these groups. We want people to feel comfortable online, and we have worried so much about the security, our concern sometimes interferes with being online.
I am going to let the participants introduce themselves this morning, continuing with Alan Douma.
Douma: Deja vu all over again. I will slow down this time, as you have heard all the important stuff already. In talking about how health care professionals can support online groups, there are many things to be done and many different venues for doing them. We need people to be leaders, whether in their political, professional, or personal lives. Leaders move us forward and have a positive influence, and a health care professional can provide direct support. It is a good thing to do. It should also be part of the prescription that you get as a part of the medical delivery system.
There is a plethora of opportunities for accessing help, and it is the duty of the health care professional to understand how this help is obtained and to be able to point to a resource. And you can set up your own self-help groups. Telephone was the first great invention. It is more technological recently, but that same kind of support is even more if the physician has patients calling in for support online. As a physician, I can say I have a web site, and only 15 percent of my patients can log into that now, but this is only the beginning. When the access becomes universally available, you will have many more people able to go to your web site.
You, within your own community, can move forward as Kaiser is doing. There are some risks, but you will be the leader in a year or so, telling others about the resource.
Health care professionals are already doing a hell of a lot. I will use the AOL statistics. The number of people using AOL that are physicians is from 50,000 to 100,000. There are 250,000 health care professionals on AOL. Health care professionals comprise 100,000 to 110,000 of those who are on the Better Health Medical Network, being there as self-help ad hoc professionals. Maybe they are not all health care professionals, but they are helping as there isn't the hucksterism we have in many other venues.
Community interaction is not paid for, and it is the volunteers who share with the community --helping 'til the early hours in the morning. Try to get people to go online to at least see what the community is doing. Tell them about it. At the same time we are training students for the needs of people of tomorrow. Something else to think about, which is probably the biggest challenge, and is being talked about the most, is the health care professional who is a resident expert. By combining medicine and technology, the people with the problems will have the expertise that many experts don't have. Thank you.
Ferguson: I would like to have some feedback. We are enthusiastically talking about the interested people, but the population that needs to be reflected is the one that isnt. A poll of a group of health care professionals included four questions: are you using e-mail, would you use it, etc.? What would you guess that respondents said? Almost none use doctor to patient e-mail. Maybe 30 percent thought they might, and 40 percent said they probably wouldn't. I would like your advice and guidance Alan, to bring our fellow physicians into this.
Douma: I think we need to focus on what is in it for them. The patient care outcome is the benefit, and until we can frame it in that way, we can't get the federal Government to help us too. The "I might do it" numbers are a start, and they are the market to tap.
Audience: I work for American Psychiatric Association Insurance, and the laws for telemedicine aren't there yet. Until the state takes care of this, I think we will see this development go slowly.
Audience: I would like to rebut that. We have doctors that go on the phone every day, and why would we need an outside agency to police this?
Audience: How would you like to have to copy and paste a disclaimer all the time? I don't have the time. I have too much to do, and I have a family. I only have one patient using e-mail with me anyway, and I advertise it in all my information.
Adler: I would now like to introduce John Grohol.
Grohol: I am an online psychologist, and I am the director of a nonprofit health care group known as Mental Healthnet. I started in 1991, as I needed to get online and find resources. A friend of mine committed suicide, and I needed help as my social support system. My family and friends were a thousand miles away. To find a depression group was appropriate, and I had a hard time trying to find it on the Internet. This was before the World Wide Web, and it was primarily news groups that were out there; there was very little health-related information or support for consumers.
I did eventually find them, and I put together an index, as no one was doing it. I started developing an index and eventually web sites. Luckily the president of a software developer saw the work I was doing, and I was then hired to do the work there. That started Mental Healthnet. We are in the top three mental health sites, getting five to six thousand visitors a day and a million hits in a year. We are very small but very popular. There are two staff members total, but it is the technology that allows us to provide this service. I then took a proactive stance in finding resources online.
I went into some of the support groups, and I started understanding how much information was out there. I started acting as a consultant, correcting the misinformation that was already out there. Here is our home page on screen. There is simply a lot more to know than is known on the street.
I then threw up a mental health discussion forum, and we had 10 postings to it every day. I created more discussion forums, and now we have more than a dozen different forums on different mental health disorders. We have self-started health forums as well, enabling people to talk to themselves and help themselves out. Here on the screen is a recent listing. The odd thing is you can be anonymous on the web. There may be numbers or nicknames, and there is no way of tracking them. I have no idea who they are, and I don't care.
I see myself as a broker of technology, offering the back office that provides the kinds of resources to consumers. The thing is, support groups are not new; they have existed for a while. Support groups are an invaluable additional modality for people who live in rural areas. In those areas you can't choose support groups in downtown. In those situations, they are very useful.
Going back to Mental Healthnet, we now have it all catalogued, giving a qualitative guide, and we label them in categories in terms of how well they help in giving information. The other thing I do is host Mental Health Chat, a question and answer session. I sit in different places online and the questions I receive are just general, but there is a lot of misinformation given out. "Mental disorders are biologically caused" is what I always hear. Well, there is no research that says that. Mental disorders are a very complex phenomena, and there are no real answers just yet. But physicians don't realize that it is hard to ask for help. I try and ease that.
I hear stories about physicians giving incorrect information, and many times people ask me questions instead of their own physicians. I don't know why, but it is easier. These are the real examples of a health care professional going into the Internet world and helping. I am not practicing now, but if I were, I would still be doing this, as I have a lot of technical gumption. But there is a lot of information I don't know, and there is information all over the online world still to be gotten. It is relatively accurate and okay to point patients to it. Physicians should let them know it is out there.
Audience: Who puts your glossary together?
Grohol: It is an ongoing process, but thanks to the software, it is easier to do than it was before we had this technology.
Audience: What are some of the negatives?
Grohol: The online world is still a reflection of the real world, and there are different ideas out there.
Madara: The online world is self-reflection, and the advantage of the technology is that people can get many resources on the same topic or issue.
Audience: But there is a lot of pain, and there are personal attacks in news groups.
Grohol: What you're speaking of is the ease of attacking these news groups, which is called "flaming," and it is not a unique news group phenomenon. I would not do it on the street. Online those social barriers to stop you aren't there, and people say what is on the top of their heads. That is the downside, and there may be people in public forums who do this.
Adler: I would like to introduce Arlette Lefebvre.
Lefebvre: I get e-mail from children all the time, and I think we need more than legislation. We need to be passionate about what we do, and I do it because it is fun and it is so helpful.
I am a psychiatrist for children, and I am now developing some web sites. Why bother? We can make health care better, and with volunteers, we can accomplish a lot.
My first experience with self-help was personal. My brother was born with Down's syndrome, and he now works part time. In Belgium, Danny loved our little pedal car, and other kids started to bump the car and throw crabs in the car with Danny, and he cried and never got in again. A teenager then helped me get him back into the car, teaching me how to avoid the bullies and get help. I strongly believe that one good role model is worth a thousand shrinks.
There are more differences about self-help groups. There is practical help. You can get the best technical expertise about, for instance, buying a wheelchair, or how to sit in it, and only the people who have been in that situation can teach you those things. To participate as a person online it is important to be a coach or broker of information.
The ABC's of online self-help are to: (A)ctively participate in online self-help, (B)e yourself as a professional, and (C)ommunicate facts, open mindedness, and respect. It is important to not just pay lip service.
Some guiding principles: Traditional professionals think that they must know it all. The new medical professional only needs to know how and where to find it. You may not know much, and it may be one little thing, but it could be useful to thousands of people.
Ability online is the group I have started because I like introducing my kids to a good role model. I constantly see parents of children with problems who do not know of all the information that is in their backyard.
I believe in three principles. The first is that these online services be free for everyone, as there are a lot of disabled people, blind people, etc., with different types of computers and whom have varying levels of skill. We need to build links between people who are disabled and those whom are not. Here are a few examples of the letters I receive from the children on screen. Once I got a message from Jim Abbot, the baseball player born with one hand. He heard about my program and faxed me a letter saying that you can achieve anything. He wanted his letter online. This young boy, Mark, wrote back and now loves Jim Abbot. He wants to be a baseball player. Second, we need to generate similar experiences. And third, we need specific autonomy, improving the proper information and making it ethical.
I invite all the great people I have been to conferences with to come online with me, to participate in conferences, and to have an equal opportunity. Thank you.
Adler: We have one more presentation. It is from Edward Madara.
Madara: Basically, while working with Tom, I had more time to be on the Internet than he did. In 1982 when I first got online, I had to borrow $500 to get a Tandy computer, and I took my TV for a monitor to the dismay of my children wanting to watch cartoons.
I saw Georgia Griffith, and she ran the issues disability forum. I later found out that she is blind and deaf, and she runs it. She says that she isn't disabled; it is the executives who can't use a computer who are disabled.
There are still the bulletin services (BBSes) and recovery net. There is Fidonet that connects the health care BBSes, and there are 40 discussion groups on the municipal bulletin boards. As John Grohol mentioned, self-help groups are nothing new; we see increasing numbers, and we see that people's needs drive the system. This support is not prescribed, it is based on people's needs. For example, with Gulf War syndrome there were regular meetings of families suffering from this online, and they pulled together and got the Government to do something. We didn't have that with Agent Orange. Or with the reoccurrence of polio when the Government said that couldn't happen. They got together online and said, "Yes, we have these symptoms." Imagine if the AIDS crisis came 10 years later. The response and support could have been so much more. It is easier for health care professionals to get online to utilize research. I would like to see more of a focus on ethics, such as ethics committees, as many times students interrupt these groups, making participants feel like zoo animals for study. I would like to see regulation to address ethical concerns.
What we have been doing is networking, and I would like health care professionals gathering together, professionals bringing people together in the community. We had one woman with postpartum depression who wanted another child, but was afraid of suffering from her postpartum psychosis. We said don't do it alone, and she now has started the first group on postpartum depression. Now there are 100 of these groups. I could go on forever with these types of examples of people with different disabilities starting groups and getting together and the help that was provided by these opportunities.
This is how I see the role of the professional. To help provide access, be an advocate for access, and serve as a resource person to online groups. I see the professional as someone who serves as a consultant or advisor. An example is the ACHE group; it has professionals who ran migraine studies. They are now available to advise the organization as well as the people online in this area.
You can serve as a guest speaker with online groups where a one-to-one relationship with a speaker becomes one-to-a thousand. We then archive these discussions so people can go back to them later. The professional can utilize online support to provide referrals and help face-to-face (F2F) groups develop. This person can serve as a networker for online groups and involve groups in education, in that there are people with disabilities who can teach classes online by their experience. Students can then learn from patients who may not be able to leave their homes. The professional or expert can serve as a researcher, but "with" groups, not "on" groups. The professional can develop helpful consumer health information tools for or with groups. This can be done right with the patients, as the research trial group is in front of you. Another need that must be met is that of groups and individuals. They may need help in getting together. You can provide this service by creating nesting areas, which are areas that some hospitals have that serve to attract the people who come together there. And then they can form self-help groups. Most importantly, listen. Doctors must learn that there is a lot to learn from self-help.
Ferguson: We can now take a couple of questions.
Audience: I have a comment and question. I feel that there are a lot of people doing research that is unknown by others. Is anyone developing ethical guidelines for this?
Grohol: The American Psychologist Working Group is offering therapy online and is working on guidelines to handle this.
Audience: The enforcement is something that is going on, and now some people must electronically sign something saying that they are not from a pharmaceutical organization, not from an HMO, or certain other organizations. It is quite clear that there is enormous commercial volume, and the question arises, why should these groups and HMOs take advantage of this?
Audience: I am worried about issues relating to the self-help online becoming another modality of treatment. Then the professionals get the funding, and the people with the problem don't get the funding to get this done.
Lefebvre: The social responsibility is important, and I refuse to help without sharing responsibility and credit from any work that comes from it.
Audience: People should be respected and not have control taken from them. The tendency is to take control. We need to not take control when we have it already.
Ferguson: The next session will allow us to look at this in more depth. Much thanks to the panel.
Ferguson: At this point I would like a person from each interest group to give a summary and feedback of what was discussed and what conclusions you came to.
Lefebvre: We discussed how to introduce people to the Net and get them online with new experiences. Discussion was held on how to find support groups, which was through message boards, e-mail, and mailing lists. What if you don't find the group you are looking for? We discussed how to start self-help support groups; accessing information or networks; and accessing certain areas that enable you to link with different types of people. We discussed how to have access to computers and how to help kids and adults learn to use the computer. One way to get access is to ask organizations who have computers if they are selling or renting them. There need to be discussions about finding a buddy or teacher to help you get online. Training sessions in library and staff organizations is a start. We discussed developing mentors and teachers to deal with people who have no understanding of the use of a computer.
Because there are self-help support groups on the Net does not mean that people who need them know how to access them. And we finally discussed how to avoid being sued. You have to be clear about what your group is; specify what you are about; and get other people to say what you are about. That better assures that you are safe.
Audience: How do you get training on a computer?
Audience: There are computer user classes all over the country, and they are willing to help.
Renner: Discussions about the Internet can be self correcting. There are not a lot of rules. There are programs of major information but no concrete solutions for getting it out. I will leave my two web site addresses on the table for anyone interested in a project I am about to start in creating a new self-help web site.
Audience: We had discussions about how to get equipment and services, and we also discussed going to companies and manufacturers. Getting equipment to the people who want to access the Net can be done through personal delivery, Federal Express, or UPS. We discussed the Minnesota State Government donating computers to people who do not have access and who would like to utilize the Internet.
Audience: We had discussions concerning augmenting partnerships between self-help groups and health care professionals. There is a barrier between the self-help groups and health care professionals that's like the Great Wall of China. We decided we would like to see this barrier broken and see an ongoing connection between the self-help support groups and health care professionals/providers.
Ferguson: During these workshops there are some people who have little or no chance to participate. I would like to give everyone an opportunity to state their names, say what companies they are affiliated with, and the reasons why they have attended this conference.
Breakout Group 2. On-line Self-Help Networks: Issues of Quality, Respect, Authority, and Ownership
Thursday, April 17
Simmons: Information is available in the context of an interaction. If it is factual, it is pretty easy to design. But medical facts are not actually factual. In this case, we have medical fields where it is easy to decide what is information and what is not. Misinformation can come from the medical people. People are trying to learn who or what is the source.
Renner: I would like to address alternative medicine and make the point that you cannot define the term. The New England Journal of Medicine tells you what insurance will and will not pay for. I have come up with five categories. My five categories are home remedies, quacks, untested or unproven areas, research or investigation, and proven areas that have some kind of evidence. We need to get consumers and patients on the same level on the playing field.
I am going to go back and talk about home remedies. I am a great believer in home remedies -- the book I wrote on it had referenced 400 physicians. It is accurate as of the time we wrote it. It does not have everything in it. We had criteria. Chicken soup can be fatal or safe. You could have misinformation in categorizing, but you have to start with some categories. Those five categories have kept me out of great difficulty. If we were sitting here today and trying to teach people how to navigate, would you use astrology or a map? We tolerate a lot of things in the health care field. We need to start getting people on the Internet, and not just patients or consumers. Those five categories have helped me to tell patients certain things. We have people who are quite capable of playing games on the Internet. Patients ask their doctors very critical questions.
Audience: Physicians get mad when patients ask them questions about an alternative to medication.
Renner: We have got some situations that are not good for doctors or patients. Anyway, those five categories have kept me out of trouble. I do use alternative medicine.
Audience: Some people want to use it exclusively.
Audience: The owners of an online support group -- what responsibility do they have concerning the level of quality?
Simmons: I think that is a very interesting question. I started my list when there were very few people on the Internet. I come out of a culture of computer hackers. I come out of being a patient with disabilities. I just didn't think of it at all at the time I started. I do very little censorship, but I'm not sure that I shouldn't be spending more time censoring than I have been. I have explored the laws, and in Massachusetts, I am covered by the law. I feel a strong responsibility to my subscribers. I take messages off for two reasons: if they are mean, and if they contain x-rated humor. X-rated humor I don't like. I have dropped subscribers because the humor was getting a little too raw.
Renner: There are groups that give you instructions and tell you not to do what your doctor says. Other people are reading that don't send in. These types of occurrences can cause some mischief.
Audience: I have no way of knowing the impact of these people. I don't know what I should and should not be doing. I feel a responsibility to respect my subscribers. That part of it is self-correcting. Mine is a LISTSERV. I think that the third party is going to be the subscriber. I don't see a good mechanism for determining what should and should not be acceptable content. Again we have to have more control.
Grohol: Will you post a suicide note?
Simmons: I think that I would do that. I would call my personal psychiatrist and ask for information. Todd probably has more information about that. I have access to a lot of case work providers.
Audience: If you are running a telephone system, and somebody called the operator and said, "I am going to kill myself," will that phone system act as a therapeutic line?
Simmons: I am very concerned about data mining (people collecting archives where employers can find information they can use to determine whether to hire an individual). We need federal regulations to prevent this. I would like to see technologies and laws made to catch the lurkers.
Audience: If you get someone's e-mail, you can get all the information about who is hosting them. It is amazing the energy that some individuals have.
Audience: On mental health, we host only four mailing lists. All but one are professionally oriented. We are not too concerned about what health officials are talking about. It is like therapy online. In terms of how we handle our responsibility to readers, we would see that everyone has a user license, and let it be known that we don't warrant the information to be valid. It is a huge site. There is a lot of information given out. One of our discussion forums is called self-hurt. It is where self-mutilators go to talk. We are supporting the ability to talk about it and get it out in the open.
Grohol: Are any of you lurkers? I think lurking is also learning. This is so new to almost all of us. I did a book review on a subject regarding a Government official being deceptive. I posted this book review and got some people upset. I happened to go to a meeting and met the guy who had said something about me posting the review. There is an antipsychiatry list. And most of those people are antidepression. There is just lots of misinformation.
Audience: I think what you find now is that each list has its own set of rules. These rules all vary. Some are more closed.
Grohol: I was really surprised at the openness of those kinds of discussions. Every community is different.
Audience: That is why you have to lurk -- so that you can violate. Talk radio is very big. And they say that only 5 percent of the people do not use it.
Simmons: About lurking before you leap -- usually, if people are going to send you a message, it is within only a day or two. Time is of the essence. There is a lot of harm. Everyone has been battered about things.
Grohol: We have a psychiatrist who sends e-mail to people, and sometimes it can really help. There is another part of the Internet that is going to have a big ripple effect. It is called the intranet. It is going to be a much more accurate source of information. It is going to be heavily controlled.
Audience: Isn't that going to be a closed network?
Grohol: It will become professionally driven. A very good Internet site already exists with multiple sources of information. We will have different levels of quality. People won't waste their time.
Audience: Having Columbia information resource materials, that can be wonderful. The list will always be there.
Grohol: Because they have so many thousands of networked people, they should give out several questions and answers.
Simmons: I am paranoid that the insurance company is making reimbursements to people because it is for something that is not "professional," and it costs a lot less than, say, an MRI. The physicians have really taken a switch. They are not making medical decisions anymore.
Audience: I have heard of insurance companies second-guessing the doctor. The questions are, "Can he go home, and does he have to go home today?"
Grohol: If we are talking about self-help, why have we avoided the health record issue?
Simmons: The only person who doesn't have access to my patient information file is me. Every single Harvard medical student who is in utilization reviews not only has access to my data, but to my address and phone number. It is okay if my doctor has it.
Audience: I don't think that it has been a major issue with the patient seeing his records.
Grohol: If we are going to talk self-help, I think that patients should have their own information.
Renner: If patients can have access at low cost, I think that would be marvelous with regard to the quality of care.
Audience: Another issue is that there are physicians who are over- and under-diagnosing. They do this to get their patient covered. I believe that this is illegal. And it is these records that are being used to provide information.
Simmons: This has been great fun, and I enjoyed it very much.
Ferguson: This continues with the final wrap-up group. Simmons is going to go first by presenting what her group discussed.
Simmons: When you talk about misinformation, what qualifies as such gets to be very hard to understand. Tell them how you managed your own and how people send you certain messages. I do some centralized computing. I have removed people from my list. I have a very low threshold for sick humor. Every now and then we will have advocates who come on and are mean and want to know why we will not give them any information.
Audience: In our group we talked about community leaders and what we do with them once we get them. We have to make sure they know who to contact. Once we do have the community leaders, we must consider training -- whether they are professionals. Monitoring is very important. Ownership is very important, and we talked about the people who needed to have ownership.
Ferguson: I would like to wrap up with a few concluding observations. These are the things that occurred to me today. There are some bad sides of the Internet, but on the whole, the self-help community helps others. People often say that one of the things that they like about this means of support is that it is available 24 hours. Another really strong impression that I got about the establishment and maintenance of web sites was that there is a significant degree of quality and attentiveness upheld to create consistency. Looking into the future, I think that one thing that is going to give us a real jump is the buddy list. I find that to be an amazing dimension. And it is worth visiting America Online. These systems are mainly to deal with crises and to communicate with other people. I think what we need to talk more about is professional existence. I think that is a paradox that we are going to have to do something about.
I had a very interesting discussion with one of Linda Adler's clients at Kaiser. Kaiser is looking at a major revision of primary adult medicine. In their new job description they are told that they need to spend more of their time doing desktop medicine.
I want to thank you all very much for coming.
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