Hello, doctom-ga!
Thank you for asking such an interesting question. This research was
truly a pleasure!
While I did find some approximate statistics for online medical forum
users in the United States, I did not find any numbers for worldwide
users. I did, however, uncover a number of studies and reports that
highlight the advantages and disadvantages of online medical support
groups, as well as opinions from both patients and doctors.
I hope the information I have found is as useful and enlightening to
you as it was to me!
==================================================================
HOW MANY USE ONLINE MEDICAL SUPPORT GROUPS IN THE UNITED STATES?
==================================================================
The closest I could find to an actual number for users of online
medical support groups comes from Part One and Part Seven of the
following study by the Pew Internet Project. According to my
calculations from the numbers in the study, approximately 7.3 million
internet users in the United States have participated in online
medical support groups.
"Vital Decisions: How Internet users decide what information to trust
when they or their loved ones are sick." Pew Internet Project (May 22,
2002)
http://www.pewinternet.org/reports/pdfs/PIP_Vital_Decisions_May2002.pdf
(From Part 1)
"In a national survey conducted March 1-31, 2002, the Pew Internet
Project found that 62% of Internet users, or 73 million people in the
United States, have gone online in search of health information."
(From Part 7)
** "Just one in ten health seekers has ever participated in an online
support group or email list for people concerned about a particular
health or medical issue." ***
"This activity showed little increase from last year - in both the
August 2000 and June-August 2001 surveys, 9% of health seekers say
they have ever participated in an online support group. Frequent
health seekers are more likely to have joined an online support group
- 13% of those who look for health information several times a month
or more have done so, compared with 6% of those who look every few
months or less."
"In an online focus group discussion about why they do not participate
in support groups, health seekers cited privacy concerns and the need
for a "loving voice" instead of an on-screen note. One woman said, "It
seems a bit personal to be chatting about things like that, plus you
are exposed in a way on the Internet. Anyone could see what you wrote.
Confidentiality is a real big thing with me." But other participants
say the benefits outweigh the risk, and one argued, "But it's not like
they know you, or will ever see you, so why not?"
"Though the numbers are small, those who are most in need are more
likely to take advantage of online support groups. Ten percent of
health seekers in fair or poor health consulted an online support
group the last time they searched for health information, compared
with just 1% of those in excellent health. And 14% of those in fair or
poor health have ever participated in an online support group,
compared with 5% of those in excellent health."
===
One other article contains very different statistics:
According to "Connecting Online For Support." The Early Show. (Jan. 25, 2003)
http://www.cbsnews.com/stories/2003/01/24/earlyshow/series/main537891.shtml
"...on a typical day, about six million Americans search out medical
advice online. One in four seeks online community support."
======================
STUDIES and ABSTRACTS
======================
Excerpt from "Vital Decisions: How Internet users decide what
information to trust when they or their loved ones are sick." Pew
Internet Project (May 22, 2002)
http://www.pewinternet.org/reports/pdfs/PIP_Vital_Decisions_May2002.pdf
"Instead of treating the Internet as a vast library, some health
seekers are joining online communities that allow them to provide
support and keep up with the latest research. In an online focus
group, one man living with emphysema said he spends eight hours per
day online, scouring Web sites and passing on his knowledge to other
members of his online support group, Efforts. (17) He is grateful to
the group for giving him hope, especially in the early days of his
diagnosis, saying, "Knowledge is key in living with a progressive and
fatal disease. I know pretty much what will take my life. Now I am
learning how to hold it off." Another focus group participant's sister
has epilepsy and was thinking about getting pregnant, so they dropped
into an epilepsy support group to get advice before talking to her
doctor about it. Indeed, 33% of health seekers have looked for
information about a sensitive health topic that is difficult to talk
about - some people feel more comfortable asking strangers or believe
that someone who has been in their situation will advise them better
than a health professional can." (18)
"There is evidence that peer support can not only improve the way
someone feels but cut costs as well. A randomized study of 580 people
with chronic back pain showed that those who participated in an email
discussion group with other patients and three expert moderators
experienced less pain and saw their doctor less than those who did not
participate." (19)
"Online patient-helpers" can work in concert with a doctor's advice to
improve care, as well. For example, Karen Parles, who did not smoke,
was shocked by a diagnosis of terminal lung cancer at the age of 38. A
librarian, she used her skills to research a new treatment and to
share her concerns with an online support group, the Lung-Onc mailing
list. Group members reassured her about lung surgery and gave her tips
on how to sleep on sore ribs during recovery. After going through
successful treatment for her own cancer, Parles created a
clearinghouse of online information so that others could benefit from
her research: lungcanceronline.org. Most Americans will hopefully
never need such specialized resources - indeed few health seekers have
sought out such support online - but those who do use it are forever
grateful." (20)
===
"Online Support Groups: Nuts and Bolts, Benefits, Limitations and
Future Directions. ERIC/CASS Digest.
http://www.ericfacility.net/databases/ERIC_Digests/ed446330.html
===
"E-Patients Prefer eGroups to Doctors for 10 of 12 Aspects of Health
Care." The Ferguson Report, Number 1, March 1999
http://www.fergusonreport.com/articles/fr039905.htm
This excellent survey also contains patient testimony about the
helpfulness of online support groups in several areas.
===
"Characteristics and Benefits of Online Support Groups," by Laura S.
Agnew. University of North Carolina at Chapel Hill. (July 2001) (133
pages)
http://neoref.ils.unc.edu/2702.pdf
===
"Beyond Hearing: Where Real-World and Online Support Meet," by
Jonathon N. Cummings, Lee Sproull and Sara B. Kiesler. Group Dynamics:
Theory, Research and Practice. 2002. Vol.6, No.1, 76-88.
http://homenet.hcii.cs.cmu.edu/progress/beyondhearing.pdf
Abstract:
"A random sample survey of an online self-help group for people with
hearing loss was conducted. Two factors predicted active participation
in the group: a lack of real-world social support and being
comparatively effective (having less disability, coping more
effectively, and using real-world professional services). More active
participation in the group was associated with more benefits from the
group and stronger reports of community orientation. The authors also
found evidence that integration of online and real-world support (if
it existed) benefited participants. That is, if supportive family and
friends in the real world shared the online group with participants,
participants reported above average benefits, whereas if supportive
family and friends were uninvolved in the online group, participants
reported below average benefits."
===
"The Best of Both Worlds: An Online Self-Help Group Hosted by a Mental
Health Professional," by Robert C. Hsiung, M.D. CyberPsychology &
Behavior. Volume 3, Number 6. 2000, Mary Ann Liebert, Inc.
http://www.dr-bob.org/download/CP_3_6_p935-950.pdf
Abstract:
"Online mental health groups can be classified as autonomous self-help
groups or support groups led by mental health professionals. An online
self-help group hosted by a mental health professional, in which the
mental health professional focuses on maintaining the supportive
milieu and the members of the group focus on providing the support for
each other, is hypothe-sized to combine the best of both worlds.
Psycho-Babble, a group of this type hosted by the author
(http://www.dr-bob.org/babble/) serves as an example. Between January
and August 2000, 1,516 members posted 21,230 messages in 3,028
discussion threads. Forty-eight percent of posters posted just once.
Thirteen percent of threads consisted of only the initial post. In
July 2000, 534,219 Psycho-Babble pages were served. Samples of
educational and supportive posts, misinformation, "Internet
addiction," help-rejecting, limit-setting, and member feedback are
given. The usage statistics and the anecdotal evidence of the posts
themselves support the effectiveness of the group. The hypothesized
key ingredients are discussed. The asynchronous online (message board)
format is highly usable and makes the group accessible and safe.
Drawbacks, however, are the potential for "multiple identities" and
the technical difficulty of effectively preventing determined
individuals from gaining at least temporary entry into the group. This
hybrid type of group combines the best of the two worlds of self-help
(empowerment) and leadership by a mental health professional
(maintenance of the supportive milieu)."
===
"Online patient-helpers and physicians working together: a new
partnership for high quality health care," by Tom Ferguson. BMJ
2000;321:1129-1132 ( 4 November)
http://bmj.bmjjournals.com/cgi/content/full/321/7269/1129
===
The following is a very interesting interview with Dr. John Lester,
director of information technology at the Department of Neurology,
Massachusetts General Hospital and a research associate at Harvard
Medical School. Dr. Lester runs the online support group,
BrainTalk.org, for neurological conditions.
"Expert Driver" Interview: Medical Knowledge as a Social Process: An
Interview with John Lester. Ferguson Report, Number 9, September 2002.
http://www.fergusonreport.com/articles/fr00902.htm
Some excerpts:
TF: "How many members do you have-and how many communities?"
JL: "BrainTalk.org has about 46,000 registered members (people who
post messages) and more than 400,000 non-registered regular readers
(people who read messages but don't post anything.) This 10-to-1 ratio
of "listeners" to "talkers" is pretty consistent with what I've seen
in other online communities. We host more than 250 different
communities. Some are devoted to a specific neurological disorder,
like multiple sclerosis or Parkinson's disease. Others focus on issues
that are important to a variety of patients, like our very popular
"Artistic Expression and Therapy" community where people use creative
writing and art to help them deal with neurological concerns, or the
"Forget-Me-Not Garden of Memories," where they share stories of loved
ones who have passed away."
TF: "You also host some pretty unusual online communities. Can you
tell us about them?"
JL: "One of my favorites was a BrainTalk chat room group called "Club
Avonex," which was organized by about 50 housebound multiple sclerosis
patients who had to self-inject themselves with the drug Avonex every
day. This particular self-injection process is very stressful and
often painful, so even though they lived in many different time zones,
they all agreed to adjust their injection schedules so that they could
all simultaneously log on to the "Club Avonex" chat room and inject
themselves at the same time. That way, they could offer each other
real-time guidance and support-before, during, and after the
injection."
TF: "I've been impressed by the insight you've embodied in Lester's
Law: "Medical knowledge is a social process: The conversations that
occur around artifactual data are always more important than the data
themselves." How did you happen to come up with it?"
JL: "It was something I'd observed in following hundreds of online
communities in healthcare since 1994. Rather than worrying about "the
quality of medical content" on the Internet, as many medical
professionals do, patients figured out that the most effective
strategy was to organize social networks focusing on specific
healthcare issues. The power of these healthcare-oriented social
networks can be quite phenomenal. Having good "medical content" may
well be useful, but being able to tap into the expertise of hundreds
or thousands of e-patients around the globe is considerably more
powerful. The amazing thing is that patients figured this out a long
time ago, while most healthcare professionals still don't really get
it."
TF: "What's the most important thing health professionals need to
understand about e-patients?"
JL: "What e-patients actually do online is a lot more complex-and much
more social-than most health professionals realize. A typical MS
patient might say, "OK. First I'm going to check my e-mail-including
my mailing list messages- and respond as needed. Then I'll go see if
there are any new messages on my three favorite bulletin boards, and
maybe post a few comments. Then I'll check my favorite chat room to
see who's there, and if I don't get into any interesting discussions,
I'll check my MS buddy list to see who's online right now and see if I
can invite some friends to join me there. And after that I'm having
lunch with Matt, an MS-er from California, who I know really well from
the group, but whom I've never met before face-to-face. And after
lunch I need to go to online to read the latest issues of the three
key medical journals for MS so I can summarize the key articles for my
support group."
TF: "And you were saying that online community members can sometimes
be a vehicle for providing medical advice to those who can't easily
access a doctor themselves."
JL: "They often serve that purpose. As one e-patient recently
explained: "When I talk to my doctor, I hear myself asking questions
that my online 'family' needs to know. It's as if all these other
people-the members of my group-are asking questions through me. And
whatever answers I hear from my doctor, I know I'll share with them
online."
TF: "How many medical professionals understand of all this?"
JL: "Well, there's you and me... (laughs) Just kidding. No, really,
not nearly enough. These things are happening outside the documented
clinical encounter, so most doctors aren't aware of them. And even
when clinicians think they understand what their patients are doing
online, they usually don't."
(Read more....)
===
"Online Breast Cancer Support Groups Beneficial." Oncology News
International. Vol 11, No 4 (April 2002)
http://www.cancernetwork.com/home/frames.htm?http://www.cancernetwork.com/journals/oncnews/n0204p.htm&3
"In recent years online chat rooms and list servers devoted to a vast
array of special interests have become a staple of American life. Now
a pilot project has shown that an internet support group significantly
benefits women coping with breast cancer, said Mitch Golant, PhD, vice
president of research and development for The Wellness Community (TWC)
National, Santa Monica, California.
"We have preliminary evidence," he said, "that women who participate
in small, professionally facilitated, online breast cancer support
groups can obtain benefits on a number of psychological and
quality-of-life variables thereby allowing for the possibility of
helping those who do not or cannot come to a central location either
because they are too ill or live too far away."
"The implications of the study are "far reaching," Dr. Golant said at
the American Psychological Association Conference on Enhancing
Outcomes in Women?s Health. A randomized study is now underway to
compare the benefits of face-to-face support groups with those of
online support groups, he said."
"Online support groups cost only a fifth as much as face-to-face
sessions. TWC has initiated The Virtual Wellness Community (see box)
and has produced experimental manuals on running online groups that
may help in creating similar groups for people with other diseases."
"In the pilot project, eight breast cancer patients and a professional
facilitator met online in four different groups for 1½ hours each week
for 16 weeks (a total of 32 patients)."
"Discussion ranged across medical, personal, and emotional topics
chosen by the participants. In addition, the group members had
24-hour-a-day access to a private electronic bulletin board where they
could continue their exchanges when the group was not in session and
where they could read transcripts of any meetings they had missed."
"The women experienced a significant drop in depression, an improved
ability to handle their pain, and increased "zest for life" and
enhanced spirituality on a measure of "post-traumatic growth," Dr.
Golant said. In follow-up interviews, three quarters of participants
said they believed the group had helped them."
"Just under half of the women (49%) lived in rural areas or small
towns, 39% in moderate-sized cities, and the remainder in large
metropolitan areas. They ranged in age from under 30 to over 60, with
54% between 40 and 49. Ninety-one percent were white and the rest
Hispanic and Asian. Seventy-one percent were married, 20% divorced, 4%
widowed, and the rest single. A third each had either been to or
graduated from college, and a quarter had graduate education.
Forty-eight percent had stage II disease, 22% stage I, 12% stage III,
and 4% stage IV; the remainder either had other forms of the disease
or had not yet been definitively diagnosed."
"The professional facilitators have the same goals in both
face-to-face and online support sessions, but the differing demands of
the two environments require them to behave somewhat differently, Dr.
Golant said."
"Because electronic sessions lack such cues as tone of voice, body
language, and facial expression, the facilitator has to use somewhat
different techniques, asking more questions than would be appropriate
in person in order to clarify and direct interactions. Although
facilitators may do only 10% of the speaking in face-to-face sessions,
they may take up to 25% of a group?s time in virtual groups. The
virtual session nonetheless helped fill most members? need for
emotional support, Dr. Golant concluded."
==
* An abstract for the actual study is available below, and the full
text of the study is available from "Cancer" for a small fee. (I have
provided directions on how to obtain it.)
"Abstract for "Electronic Support Groups for Breast Carcinoma: A
Clinical Trial of Effectiveness. Submitted to Cancer.
http://www.thewellnesscommunity.org/media/articles/Abstract_cancer.pdf
Abstract also available on PubMed
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12569591&dopt=Abstract
* The link to the full text article does not work, but if you go to
the Interscience website and search the Cancer journal for the article
you can buy the full version.
http://www3.interscience.wiley.com/cgi-bin/jhome/28741
(Type "Electronic Support Groups" in the search box to bring up the
article for purchase)
=
Also read: "Virtual Support. Transcript: Cancer Survivor Ted Kennedy." ABC News.
http://www.abcnews.go.com/sections/community/DailyNews/chat_kennedy022202.html
To read about how the study was initiated, see the following:
"Net Gains? The Wellness Community Explores Internet Support Groups
for Women with Breast Cancer," by Mitch Golant, Ph.D. The Los Angeles
Psychologist. (Nov/Dec 2001)
http://www.thewellnesscommunity.org/media/LACPA%20Nov_Dec%202001.pdf
====
"Can a Back Pain E-mail Discussion Group Improve Health Status and
Lower Health Care Costs?" by Kate R. Lorig, DrPH; Diana D. Laurent,
MPH; Richard A. Deyo, MD; Margaret E. Marnell, PhD; Marian A. Minor,
PhD; Philip L. Ritter, PhD. Arch Intern Med. 2002;162:792-796.
http://archinte.ama-assn.org/cgi/content/abstract/162/7/792
Background: "Given the high health care utilization, limited evidence
for the effectiveness of back pain interventions, and the
proliferation of e-mail health discussion groups, this study seeks to
determine if the Internet can be used to improve health status and
health care utilization for people with chronic back pain."
Methods:" Randomized controlled trial. Participants included 580
people from 49 states with chronic back pain having at least 1
outpatient visit in the past year, no "red-flag" symptoms, and access
to e-mail. Major exclusion criteria included continuous back pain for
more than 90 days causing major activity intolerance and/or receiving
disability payments."
Conclusions: "An e-mail discussion group can positively affect health
status and possibly health care utilization. It may have a place in
the treatment of chronic recurrent back pain."
Purchase full text - http://archinte.ama-assn.org/issues/v162n7/abs/ioi10219.html
===
"Internet support groups for depression: a 1-year prospective cohort
study. Houston TK, Cooper LA, Ford DE. Am J Psychiatry. 2002
Dec;159(12):2062-8.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12450957&dopt=Abstract
OBJECTIVE: "This study described the characteristics of users of
Internet-based depression support groups and assessed whether use
predicts change in depression symptoms and social support. METHOD:
Users (N=103) of these groups were recruited into the study cohort and
followed prospectively. Demographic characteristics, support group
use, depression care, score on the Medical Outcomes Study Social
Support Survey, and score on the Center for Epidemiologic Studies
Depression Scale (CES-D Scale) were assessed by Internet survey at
baseline, 6 months, and 12 months. RESULTS: Users' demographic
characteristics included median age of 40 years, 78.6% women, and
56.3% unmarried. Most (86.4%) were currently depressed (CES-D Scale
score >22). Over 50% of participants heavily used the support group (5
or more hours in 2 weeks), and 37.9% preferred online communication to
face-to-face counseling. Social support scores were low, compared with
those from other studies of primary care patients with depression. The
overall follow-up rate was 81.6% at 6 or 12 months. During follow-up,
72.6% of responders still participated in the online group; 81.0% were
still receiving face-to-face depression care. Heavy users of the
Internet groups were more likely to have resolution of depression
(CES-D Scale score < or =22) during follow-up than less frequent
users, after adjustment for age, gender, employment, and baseline
CES-D Scale score with logistic regression. Social support scores did
not change during follow-up. CONCLUSIONS: Users had high depression
severity scores, were socially isolated, and perceived considerable
benefit from the group. Internet depression support groups warrant
continued research regarding supplementation of face-to-face
depression care."
You can buy full text here:
http://ajp.psychiatryonline.org/content/vol159/issue12/index.shtml#ARTICLES
===
"Depression in Internet and face-to-face cancer support groups: a
pilot study," by Klemm P, Hardie T. Oncol Nurs Forum. 2002
May;29(4):E45-51.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12011918&dopt=Abstract
==
"Communicating breast cancer on-line: support and empowerment on the
Internet," by Sharf BF. Women Health. 1997;26(1):65-84.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9311100&dopt=Abstract
==
"Health online and the empowered medical consumer," by T. Ferguson. Jt
Comm J Qual Improv. 1997 May;23(5):251-7.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=9179717&dopt=Abstract
==
Some cancer patients benefit from online support
http://12.31.13.115/HealthNews/reuters/NewsStory021920035.htm
=======================
ADDITIONAL REFERENCES
=======================
"Using Health-Related Online Communities." Commoncraft (Sept 2003
http://www.commoncraft.com/archives/000298.html
"Evaluation of support groups for women with breast cancer: importance
of the navigator role," by JE Till. Health Qual Life Outcomes. 2003
May 1;1(1):16.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12756054&dopt=Abstract
"Support groups offer understanding, information." From MayoClinic.com
(Sept. 23, 2003)http://www.cnn.com/HEALTH/library/MH/00044.html
"Internet Chat Rooms for Breast Cancer Patients: The Role of
Professional Leaders," by Morton A. Lieberman, Ph.D. and Mitch Golant,
Ph.D. The Wellness Community (March 2001)
http://www.thewellnesscommunity.org/research/abstracts/Summary_Internet_Chat_Rooms.pdf
===
Again, I hope the information I have found is helpful. If you need
further clarification, please do not hesitate to ask. And...should you
desire additional research along these lines in the future, I would
love to be of assistance!
Sincerely,
umiat-ga
Google Search Strategy
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