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"J" <TotallyF…@example.com> wrote in message
news:3F5FBB1C.A110291E@execulink.com… > http://www.ama-assn.org/public/journals/amnews/amnews.htm > Sept 8 > Business Lurking, listening, learning: Using online support groups > Lurking, listening, learning: Using online support groups > Many say online support groups can benefit not only patients but also > physicians. Here’s what you need to know before you look into — or even > start — a group. > By Tyler Chin, AMNews staff. Sept. 8, 2003.
Hugs J 
)) What a great post. You never stop amazing me with your searching. BruceOn.
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http://www.ama-assn.org/public/journals/amnews/amnews.htm Sept 8 Business Lurking, listening, learning: Using online support groups Lurking, listening, learning: Using online support groups Many say online support groups can benefit not only patients but also physicians. Here’s what you need to know before you look into — or even start — a group. By Tyler Chin, AMNews staff. Sept. 8, 2003. ————————————————————————— —– Stephen Z. Fadem, MD, first logged on to an online support group as a patient. But he also recommends visiting one as a doctor. About 54% of Internet users participate in online support groups, up from 36% of Internet users in 2001, according to a recent survey by the Pew Internet & American Life Project. This growth is a key reason why primary care physicians with a large base of patients with chronic conditions should familiarize themselves with — and perhaps get involved in — an online support group, Dr. Fadem and others say. With this article Variations on a theme How to find a group See related content "I think spending a few minutes every once in a while going through a group is helpful and will give a physician a little more insight into what is going on with his patients and help him become a more complete physician," said Dr. Fadem, a Houston nephrologist. Dr. Fadem has participated in online support groups since 1998, after osteosarcoma metastasized to his lungs. He’s doing well now, but he still posts updates on patient support groups, and he has created separate online groups for nephrologists and people with kidney disease. In addition to serving as a valuable educational tool, online groups can, in some small way, offer physicians a chance to boost their bottom lines and efficiency, say doctors who have organized groups. Daniel Hoch, MD, a neurologist at Massachusetts General Hospital in Boston, has found that patients who previously telephoned his office with follow-up questions now often direct those questions to people using the more than 200 online forums the hospital’s department of neurology has offered to the public since 1995. Alan Greene, MD, a pediatrician in Danville, Calif., has found that parents who join online groups don’t bring their children into the office as often. "I have a mixed direct-pay and capitated population, so that actually helps [financially]," said Dr. Greene, whose Web site has offered online forums to parents of patients and the general public since 1996. "Families I was taking care of didn’t need to come into the office as often because so many of their questions and needs were dealt with online," he added. "So, I was actually able to take care of more people who needed to come in." Interaction in online groups also helps make patients better prepared when they come in, shortening visits and improving the quality of the encounters, Dr. Greene added. Open door Online support groups typically are launched and owned by patients or nonprofit groups not considered to be "covered entities" under HIPAA. While the federal medical privacy law does not apply, it could apply to online support groups formed by covered entities — doctors, hospitals and health insurers — depending on how they are set up, said John Christiansen, a health care attorney at Preston Gates & Ellis LLP, Seattle. Other common characteristics many online groups share are that postings are accessible to the public, archived by the groups and open to Internet search engines. Even groups with members-only access generally have little to no screening criteria for membership. Most groups also include members who live outside the United States. It is common for members to rant about doctors. Interesting or unsettling as that may be, it would be a waste of time for doctors to access online groups just to learn whether patients are lambasting them, Dr. Hoch said. Many patients don’t name their physicians, and even if physicians were to find specific negative comments, it’s better to let the matter stay in the group and die a natural death. "You will only make matters worse if you initiate a lawsuit, because frankly, what is it going to look like it if the media get hold of it?" Christiansen said. The ensuing publicity would spread the contents of the negative posting well beyond the number of people who would have read it online. Still, physicians who come across postings criticizing their peers can ask themselves if they do the same things these doctors are being criticized for, using the experience as an opportunity to improve themselves and their offices, Dr. Fadem said. Online etiquette As doctors venture into online support groups, they should keep in mind some customs and etiquette: Read and learn before you post. "One of the things I’ve learned about diving into medical support groups, especially uninvited, is that you have to be very careful about etiquette," Dr. Hoch said. "You have to really look at the flavor of the group, what they are talking about and what they are doing for each other. The presence of a physician within that group may not at all be welcomed and can be very counterproductive, especially if [members] sense it’s a way for the physician to generate business or look for referrals. There’s a real rapid negative response to that." Some online support groups don’t require people to subscribe to access and read posts. Registration is often needed before adding a post, but that requires only an e-mail address and a name — not necessarily a real name. If you want to address the group as a physician, however, you should disclose your real name, said John Lester, information technology director of the neurology department at Massachusetts General. That will give people a way to verify that you’re indeed a doctor and also spare you from people questioning your veracity and motives. Be respectful, diplomatic and humble. For the most part, users post high-quality information, said Don Gregg, MD, an emergency physician in Greenville, S.C., who joined an esophageal cancer group shortly after he was diagnosed with the condition in August 2002. "If there’s any information that is grossly false, I address it in a nurturing way saying, ‘I’m not an expert in the field of esophageal cancer, I’m not an oncologist or gastroenterologist, but in my experience and opinion this is such and such.’ I try to be very careful in not practicing medicine with people with whom I don’t have a doctor-patient relationship," Dr. Gregg said. When reading dialog in online groups, doctors should remember that the forums are designed to enable users to encourage, support and share experiences with each other, Dr. Gregg said. "We’re not there to take over the group or say do this or do that, because we don’t have doctor-patient relationships with those folks." "The biggest mistake a physician can make is to come in as an authority," Dr. Greene said. "If you’re going to be involved in a support group, the way to do it — the etiquette for doing it — is to offer to be there as a resource if [members] need information or something that a physician can offer." Don’t advertise. Support group members don’t like to be marketed to and may be quick to flame anyone who crosses that line. But even without any marketing, doctors may find that participation in online groups alone could generate business. "When I started this [to educate parents], the number of people who were beating on the door wanting to get in the practice skyrocketed," Dr. Greene said. Be honest, caring and sincere. Don’t join a group pretending to be someone else or with an ulterior motive, because sooner or later that will come out. "These are very emotionally supportive groups. People really seem to care about one another, and they get to know each other in these groups. The thing they like the least is somebody who is narcissistic, self-absorbed and isn’t listening to what they have to say," Dr. Hoch said. Never practice medicine online. "The way you can get into danger as a physician is if you start giving doctor-patient type of advice," Dr. Fadem said. "I think that’s really dangerous because you can interfere with a physician’s relationship with the patient and say something that gets another doctor sued." Back to top. ————————————————————————— —– ADDITIONAL INFORMATION: Variations on a theme Online support groups take different forms. Most use some combination of these: Bulletin board: Messages are asynchronously posted to a Web site and displayed in threads. Chat: Participants communicate in real time. A participant list is displayed and updated each time someone enters the chat room. Instant messaging: Participants sign up for a "buddy list." When a "buddy" logs on the Internet, others on that list will know and can invite that person to join in any ongoing real-time conversation. Listserv: An asynchronous automated e-mail list. A post to the list generates e-mail to each person in the group. Back to top. ————————————————————————— —– How to find a group The quantity of online support groups is overwhelming. The quality of these groups — along with the quality of all Internet material — ranges from poor to excellent. One way to find a disease-specific support group is by going to a search engine and typing in the keywords "support group" and the particular condition, said Alan Greene, MD, a Danville, Calif., pediatrician. Or check Web directory pages under the category of health and subcategory of support groups. Once one group has been located, physicians can ask the members for names of similar online groups, Dr. Green said. Physicians also can ask their own patients for recommendations. Back to top. ————————————————————————— —– Copyright 2003 American Medical Association. … read more »
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> "Jeff and Mary Berk" <the5be…@advnet.net> wrote in message > news:o_pr8.7567$JZ6.167459@dfw-read.news.verio.net… > > actually, in light of what i have been thru and what i know (i don’t know > > your age, that can explain a lot believe it or not)….you sound pretty > > normal. watch your diet maybe??? > > jeff, > > c.d., class of o1; > > extreme p.g., class of o2 > > "Douglas Garstang" <douglas.garst…@verizon.net> wrote in message > > news:5L9r8.2485$8r5.33@nwrddc01.gnilink.net… > > > Hi All. > > > I’ve posted this question a few times over the last several weeks, and > > > gotten some really intelligent information. Thanks. Unfortunately I > still > > > don’t know what the heck is wrong with me. So, this time I’m going to > just > > > cut right to the chase. > > > Symptoms: > > > 1. Mild abdominal pain constantly for the last 7 months. > > > 2. Some gas > > > 3. Changed bowel habits. Go to the bathroom 0-3 times a day. Once every > > day, > > > day and a half used to be normal for me. > > > Tests Performed: > > > 1. Ultrasound (Ok) > > > 2. Upper Endoscopy (very mild gastritis) > > > 3. Colonoscopy (Ok) > > > 4. Small bowel series (see note 1 below) > > > 5. About half a dozen blood tests (all ok, except for one. see note 2 > > below) > > > 6. CT Scan (Ok) > > > 7. Stool samples. Only one sample taken though… not 3. > > > 8. Couple of digital rectal exams. > > > 9. Celiac blood test (see note 4 below) > > > Notes: > > > 1. Small bowel series showed mild swelling at the upper limit of whats > > > considered normal in one region. Total time for test was about an hour. > > > 2. A blood test done at Prometheus Labs in San Deigo for Crohns showed a > > > value of 17.5 for Optc. Upper normal limit is 16.5. > > > 3. In all the blood tests WBC was fine. > > > 4. The least significant marker came back positive. > > > Symptoms I have NOT had: > > > 1. Bleeding > > > 2. Weight loss > > > 3. Diarrhea > > > 4. Skin/Eye/Joint/Mouth problems. > > > 5. Constipation > > > Medications Taken: > > > 1. Tried Levsin/Belladonna for IBS. Only took them once or twice. No > > effect. > > > 2. Tried Buspar. Made me light headed but that was about it. > > > 3. Flagyl in case it was Giardia or similar. Started to feel a bit > better > > > near the end of the course. Was previously going to the bathroom 2-3 > times > > a > > > day between breakfast and lunch. Indigestion stopped around same time. > > > 4. Also tried taking probiotics, enteric coated peppermit, digestive > > > supplement, chamomile tea, fennel tea towards end of Flagyl course. > > > The Future: > > > 1. Was referred to the IBD unit at Cedars Sinai hospital in Beverely > > Hills. > > > They ordered more blood tests, more stool samples (3 samples this time > > > instead of 1), and their ‘expert’ is going to take a further look at the > > > small bowel series X-rays. > > > 1. Have an appointment for a ‘wireless endoscopy’ on Monday. Thats the > > pill > > > camera that you swallow. > > > More Notes: > > > 1. Doctor at Cedars Sinai noted that he saw some ‘rapid transit’ on the > > > small bowel series X-rays. That is, stuff was passing through a little > > > faster than whats normal. Not a big deal though. > > > 2. The doctors assistant at Cedars Sinai sounded like she was ready to > > label > > > me with Crohns. Doctor wasn’t so sure, and he wanted to do these > > additional > > > tests first. > > > 3. My regular doctor said he was pretty confident I did NOT have Crohns > > > based on my symptoms. Admittedly he did not have access to all my files > > from > > > my GI. > > > 4. Condition has generally gotten better over the last few months. > > Abdominal > > > pain used to alternate between about what it is now, and a little worse. > I > > > don’t think you’d call it cramping though. Stool was usually soft/broken > > up > > > (but not always), and I was going to bathroom 2-3 times between > breakfast > > > and lunch. Stool is now far less broken up, and more normally formed. > Used > > > to get indigestion, which seems to have disappeared. Also used to get a > > LOT > > > of abdominal noises… which decreased a lot towards the end of the > flagyl > > > course. Still get some… but not nearly as much. > > > 5. More and more lately, the abdominal pain is really mild. Sometimes it > > > doesn’t even feel like a pain, but more rather just a ’sensation’ of > being > > > able to feel my abdomen… sort of reminding me that things aren’t 100% > > > right. I don’t know if that makes any sense or not. > > > 6. One GI that I saw also raised the possibility that bowel flora might > > have > > > chang because I’m in a different country. I’m from Australia. Been in > the > > US > > > about a year and a half. > > > My regular GI has been pretty uncommunicative in telling me what he > THINKS > > > is wrong with me. He just keeps sending me for more tests. I am hoping > the > > > people at the IBD centre, and the pill camera will be able to tell me > > whats > > > going on. Actually, I am REALLY hoping the results of the latest stool > > test > > > show Giardia or something. Thats got to be better than Crohns. The > doctor > > at > > > the IBD centre wasn’t ready to rule out Giardia eventhough I’d > previously > > > given one stool sample, and taken a course of Flagyl. > > > Anyone got any ideas? I am SOOOOOOOOOOOOO sick of thinking about this > > _all_ > > > the time. Now with the possibility of Crohns in the air, I’m worrying > > about > > > it 24×7. > > > Regards > > > Douglas > > > d…@pobox.com 