doctors joining online groups

[Guest guest]

http://www.ama-assn.org/sci-pubs/amnews/pick_03/bisa0908.htm

FROM AMA NEWS September 8, 2003

BUSINESS

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.

--------------------------------------------------------------------------------

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.

" 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.

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

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 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. "