Don't like the news? Go out and make some of your own. Bill Kelly, vice president of Sapient Health Network (SHN) and I decided to do exactly that. We were having breakfast at a Portland restaurant when Bill invited me to compose a survey for members of S HN's online support communities. I sketched out a rough draft on a paper napkin.

Bill sent our completed questionnaire to 1,000 members of SHN's online service for people with chronic and serious illnesses. We asked these online self-helpers which of three health resources--their online support groups, their specialist physicians, or their primary care docs--they found most useful in 12 dimensions of health care.

The 191 self-helpers who responded rated online support communities as more helpful than either specialists or primary care docs in ten of the twelve areas. Specialist physicians received highest ratings in two areas. Primary care docs received no top rat ings. When both types of physicians were combined into a single group, self-helpers rated their support networks ahead of their doctors in eight of the 12 categories.

The Most Useful Resource for 12 Dimensions of Medical Care--As Rated by the Members of an Online Support Community.

1. Most Cost Effective
   Online Groups--82.68 percent
   Specialist MD--8.38
   Primary Care MD--8.94
   
   
2. Best In-depth Information on My Condition
   Online Groups--76.92
   Specialist MD--20.88
   Primary Care MD--2.20
   
   
3. Best Help with Emotional Issues
   Online Groups--74.73
   Specialist MD--9.89
   Primary Care MD--15.38
   
   
4. Most Convenient
   Online Groups--72.68
   Specialist MD--14.21
   Primary Care MD--13.11
   
   
5. Best for Helping Me Find Other Medical Resources
   Online Groups--68.68
   Specialist MD--14.29
   Primary Care MD--17.03
   
   
6. Best Practical Knowledge of My Condition
   Online Groups--68.48
   Specialist MD--23.37
   Primary Care MD--8.15
   
   
7. Best Help with Issues of Death and Dying
   Online Groups--57.50
   Specialist MD--15.00
   Primary Care MD--27.50
   
   
8. Most Compassion and Empathy
   Online Groups--52.46
   Specialist MD--17.49
   Primary Care MD--30.05
   
   
9. Most Likely to be There for Me in the Long Run
   Online Groups--49.43
   Specialist MD--21.02
   Primary Care MD--29.55
   
   
10. Best Technical Knowledge of My Condition
    Online Groups--47.54
    Specialist MD--44.81
    Primary Care MD--7.65
    
    
11. Best Help and Advice on Management After Diagnosis
    Online Groups--34.59
    Specialist MD--42.70
    Primary Care MD--22.70
    
    
12. Best Help to Diagnose My Problem Correctly
    Online Groups--11.35
    Specialist MD--73.51
    Primary Care MD--15.14
    
    

E-GROUPS PROVIDE "INFORMATION IN THE CONTEXT OF COMMUNITY"

Online groups ranked significantly higher than either generalists or specialists for convenience, cost-effectiveness, emotional support, compassion/empathy, help in dealing with death and dying, medical referrals, practical coping tips, in-depth informati on and "most likely to be there for me in the long run." By a narrow margin, online health communities were also rated as the best source of technical medical knowledge. Specialist physicians were rated highest for help in diagnosing a condition correctly and for help in managing a condition after diagnosis.

The results surprised us. We had expected the support groups to rate highest for support and the clinicians for diagnosing and treating. But we had expected that the rankings for our information-related categories would have been more evenly divided.

The biggest surprises were the high ratings the online groups received for providing technical medical information, "in-depth information about my condition," and referrals to other medical professionals, It was clear that most of our respondents consider ed their online support groups their primary sources of medical information.

Many of the online community members made it clear that as they were dealing with serious medical problems and often felt overwhelmed, isolated, and discouraged, their online community served as an important and treasured haven--a place where they feel we lcomed, valued and understood. Comments from study participants provide a fascinating picture of the many ways online support communities can empower, support, and inform their members:

#107-"[My] bulletin board is the best therapy possible. I check the boards at least twice a day and it has gotten me through some rough times... I recommend SHN to every breast cancer patient I come in contact with."

#109-"I had looked up "fibromyalgia" about 18 months ago but found mostly hard, cold facts, most of which I already knew. I'd been to a [face-to-face] support group and [had] left depressed each time as everyone was so utterly self-absorbed. When I stumbl ed into SHN I began reading the personal accounts [and realized that] the only people who could honesty understand my life now were those who were walking the walk right along with me. Dealing with fibromyalgia is a challenge, but... every day is a joy in spite of my pain. [This online community] is full of real people, sharing real problems, looking for real answers, and knowing that we all walk in the same moccasins."

#33-"I truly do feel more empathy and support from the online communities [than from my doctors]. One time while talking with my doctor, he made me feel like I was beginning to annoy him with all my questions.... I asked him about a supposed "cure" [descr ibed in an] article from ABCNEWS.com and he knew nothing about it. He asked me to send it to him and he would comment... I sent it to him [some time ago] but he has yet to comment.

A GOOD SOURCE OF INFORMATION NOT AVAILABLE FROM DOCTORS

Several of our respondents commented that they had been able to find information via their online support communities which they had not been able to obtain from their own doctors:

#119-"I just really appreciate SHN and the community. I would never have found out about the clinical trials at Scripps without them."

#134-"When my questions are not answered by my family doctor, I almost always find the answer (or at least someone else with same question) on SHN... it's a comfort to know where to go online to find quick reliable answers. Helping us sort it out and help ing us to deal with chronic pain are not areas most doctors handle very well."

#53-"[SHN is a useful] source of information from patients or family members of patients who have experienced the same problems and questions--such as whether it is reasonable to undergo a liver transplant considering the cost, my age, and the lack of don ors. When I asked my primary care physician this, he ignored my question."

Some respondents noted that they especially valued the speed and convenience of medical information available from their online communities:

#184--I recently had an abdominal/lumbar strain and needed information to explain the unusual swelling inside. I had answers from SHN before the lab tests and x-rays could tell me.

#146--It was important to me to be able to do research [on my breast cancer] at the moment without having to go to a library or even talk to someone. The help was there immediately, that evening, not the next day.

ONLINE COMMUNITIES CAN HELP TO CREATE SMARTER PATIENTS

Several comments emphasized that online communities can help patients become extremely knowledgeable about their medical conditions, and that this allows the patient to play a more active role in the doctor-patient relationship:

#166--When I see the doctor it is usually me that has the answers rather than the doctor giving me the information. [When you have hepatitis-C] blind faith [in] the medical community just does not work.

#88--I do like SHN and feel it benefits me greatly. I research my Fibromyalgia and then partner up with my primary care doc. He is quite open to this type of management for my condition.

It is important to note that our survey subjects were highly experienced users of online health information and online health support. Such highly-experienced online self-helpers still comprise a relatively small part of our population. But their numbers are increasing at a rapid rate. If existing trends continue, millions of people with chronic and serious illnesses will soon become regular members of online support communities.

LIMITATIONS OF THIS SURVEY

Our low response rate (nineteen percent) may have biased the sample. Individuals with a more favorable opinion of online self-help groups may have been more likely to respond. People with more time to spend online may have responded differently than those under more limiting time pressures. And self-helpers who were doing well may have been more likely to respond than those dealing with a crisis.

Nearly all of our respondents had very positive things to say about the survey. But there were a few critical observations as well. One self-helper argued that the term "online support community" did not adequately discriminate among (a) the user's primar y online support group on SHN, (b) the other information and people-to-people resources on SHN, and (c) the other online support resources employed by each user. Another suggested that the issues we asked about could not adequately be approached with a mu ltiple-choice questionnaire. A third commented as follows:

#35--The real answer is a blend of online information, the primary care, and the specialist physicians, as well as any other possible resources (books, magazines, friends, etc.). Online health communities are a good resource, but I don't think anyone should make decisions based on one resource alone.

ONLINE GROUPS AND DOCTORS COMPLIMENT EACH OTHER

Condition-specific electronic support communities appear to be best at what doctors are worst at and worst at what doctors are best at. Even the most experienced users of online support prefer to rely on their doctors for help in diagnosing their illnesse s and recommending a treatment plan. And many of the types of information and support which online groups provide are those that many doctors are unable or unwilling to supply.

Online support groups are not about to put doctors out of business. But doctors would be well-advised to ask their patients about their involvement with online groups and to learn about these groups that are becoming such important medical resources for t heir patients. Perhaps the most important take-home lesson from the survey is that good physicians plus good online communities will mean better health care for all of those dealing with a medical condition.

Published in The Ferguson Report, Number 1, March 1999

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