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July 10, 2007 10:54 PM PDT

Outlook healthy for health care Web sites, but use caution

Posted by Elsa Wenzel
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WebMD's symptom analysis is nice.

WebMD's symptom analysis is nice.

Although you can't singlehandedly fix the woes of national health care that are spotlighted in the movie Sicko, many free Web sites at least put a bit more power in your hands to manage personal wellness or a medical crisis. Just share your data wisely.

WebMD (a Webware 100 winner) offers videos, virtual support groups, quizzes, blogs, doctor lookups, and a spiffy symptom checker. Look up drugs by a pill's color, imprint or shape. WebMD won't spam you, but as with its competitors, if you subscribe to e-mail updates about some unappetizing ailment, then prepare for related tidbits in your in-box. It's too bad that some ads, like those for toothpaste, are hard to distinguish from the rest of WebMD.

Although WebMD offers more activities, HealthAtoZ is also helpful, letting you chat with nurses and create a personal health record with feeds from your insurance claims. But community features, blogs, and videos are lacking.

RevolutionHealth pivots around a treatment portfolio you create in addition to blogging and rating doctors and hospitals. You can pose questions anonymously to the community. Talking to experts about care and insurance costs $129 annually, or is free for a month.

A newer site, TauMed (also here), enables you to create a medical library of clips from the Web, as well as a Health Space profile to add doctors and collect "friends." The question-and-answer service is novel--although it lacks a stealth mode in case you're curious about something blush-worthy.

The ad-free, clean, and less peppy FamilyDoctor and HealthFinder are excellent and encyclopedic. You can dig deeper into the latest medical studies via the National Library of Medicine's Pub Med and Medline, which also offers drug interaction lookups.

For health care quests, social networking takes on a deeper dimension beyond collecting friends, songs and party plans on MySpace or Twitter and the like. Ill people from around the world can compare symptoms anonymously online, share suffering or healing tales, and tip off each other about treatments.

PatientsLikeMe hosts support communities for people dealing with ALS, Parkinson's disease, or multiple sclerosis. You can create quick graphs that track prescription regimens and symptoms. Hopefully similar tools are in the works for a wider array of conditions. I like PatientsLikeMe's Answer Network, a Q&A service that delivers data in novel ways. For instance, bar charts display other members' top reasons for discontinuing specific drugs.

Patients Like Me helps you track complex prescriptions and symptoms.

Patients Like Me helps you track complex drug dosages and symptoms.

In addition to linking you with strangers, the Internet provides gathering spaces for family and friends. I've used theStatus, which partners with hospitals, to see from San Francisco how a dear family friend in Ohio fared after heart surgery. TheStatus feels like it sounds--a no-nonsense check-in service for the straight dope on an urgent medical situation. You can leave well wishes, too. BabyStatus is new.

I have another close family friend whose ongoing medical care requires regular attention from people in far-flung places. We tried to set up a Web-based spreadsheet to track our visits via Google Docs & Spreadsheets (more here), but only the few geeks among us could get past the awkward document-sharing steps.

We turned next to CarePages, which was built for our purpose. But its colorful design somehow didn't feel appropriate for tracking the care of a retired mathematics professor who would kick back with paperbacks about string theory in his free time. But CarePages seems a good fit for the million families, particularly those with young children, it has served. Opening a page is uncomplicated. There are sections for pediatric cancer, brain injury, and much more. CarePages is now part of RevolutionHealth.

Similarly, CaringBridge steps you through selecting one of several age-appropriate designs for a patient. You can share photo galleries, a guest book and a journal. But while I picked privacy options, CaringBridge displayed my password in clear type on its site. At least nobody was looking over my shoulder. Security sin aside, I can see why the nonprofit site's ease of use has led to success for more than a decade with some 64,000 patient sites.

With any highly personalized service dealing with sensitive topics, security should be paramount. It's hard to peek inside these sites without registering. You might want to set up a separate e-mail account for medical matters first, and never use your real name as a user ID.

The Truste seal marking WebMD, FamilyDoctor, HealthAtoZ, and CarePages shows that they use the same encryption as bank sites (so does theStatus). I like WebMD's privacy policy best for telling you how you can ask to yank your data from its servers.

All of these Web sites pledge not to send all of your data with third parties--except for John Law. No patient-client privilege here. If you are hiding a medical condition that you don't want unearthed by a search warrant, then you have the nearly impossible option of accessing these sites with a PC and IP address separate from anything else you do in life, also while using strong security software. That's still no guarantee that you won't leave personal cookie crumbs.

On that note, wouldn't it be nice if you could find what's inside all of your medical files from over the years, lickety-split, just like Googling yourself? What if you could connect that information to your genetic code? Such dreams of convenience would trigger obvious privacy nightmares. As Web-based health care tools become easier and richer to use, striking the balance between approachability and security will become trickier.

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Add a Comment (Log in or register) 5 comments
Check out med3q, a health social networking site
by mtownsel July 11, 2007 5:46 AM PDT
If you're looking into healthcare Web sites, you should also check out med3q, www.med3q.com, a new social networking site built from the ground up by a baby boomer facing a diabetes diagnosis.

med3q is a free social media site that also givesy ou access to electronic health-management and tracking tools that help you manage a wide range of chronic diseases and conditions such as, for example, diabetes.
Reply to this comment
DailyStrength.org
by Dr Sharon Orrange July 11, 2007 2:35 PM PDT
I am the medical advisor for one of the largest social networks of online support groups DailyStrength.org
In contrast to PatientsLikeMe we have over 600 online communities for various medical issues and life challenges. Members compare treatments with others struggling with similar illnesses, create their own journals (now video journals are an option) and receive updated clinical trial information, drug updates, etc from our panel of advisors.
Check out www.DailyStrength.org

Dr Sharon Orrange
Assistant Professor of Medicine
Division of Geriatric and General Internal Medicine
Keck/USC School of Medicine
Reply to this comment
patient & family run support groups
by Ed Madara July 12, 2007 5:08 AM PDT
Almost all the traditional self-help support groups now have online communities. So one has both online and community support from those "who have been there." To learn about such organizations, as well as how to gevelop your own community or online mutual help group, there's the non-profit American Self-Help Group Clearinghouse
http://www.selfhelpgroups.org
providing:
- a keyword-searchable database of over 1,100 national, international, and model self-help support groups for most any specific illness, disability, addiction, bereavement situation, parenting, caregiver concern, abuse, or other stressful life situation;
- listing of local non-profit self-help group clearinghouses worldwide
http://www.mentalhelp.net/selfhelp/selfhelp.php?id=859
- suggestions on starting both community and online mutual help groups;
- information on research of self-help groups - to see a summary of the more rigorous outcome studies, you can see a copy of the chapter from the last 7th Edition of our Self-Help Group Sourcebook at:
http://www.chce.research.va.gov/docs/pdfs/KyrouzHumphreysLoomis2002.pdf
- and a registry for those trying to start new national or international support networks that don't yet exist in the world.
For information on national, online, or model groups, people can phone their national helpline at 973-326-6789 (8:30am - 5pm Eastern, weekdays).


"My years as a medical practitioner, as well as my own first-hand experience, have taught me how important self-help groups are in assisting their members in dealing with problems, stress, hardship and pain... the benefits of mutual aid are experienced by millions of people who turn to others with a similar problem to attempt to deal with their isolation, powerlessness, alienation, and the awful feeling that nobody understands... Health and human service providers are learning that they can indeed provide a superior service when they help their patients and clients find appropriate peer support."
- former U.S. Surgeon General C. Everett Koop, MD


"Mutual support groups, involving little or no cost to participants, have a powerful effect on mental and physical health... The psychological and physical health importance of this diffuse community is striking... The self-help movement, both in face-to-face and virtual arenas, has tremendous therapeutic potential."
from American Psychologist feature article "Who Talks?: The Social Psychology of Illness Support Groups" by K. P. Davison, J. W. Pennebaker, & S.S. Dickerson, (55) 2, pp. 205-217, 2000.
Reply to this comment
by prakasharige July 11, 2008 8:16 PM PDT
Many people browse health care websites to get answers for their queries...such as "How Much Should Glaucoma Surgery Cost? I?ve heard that Brazil is one of the cheapest medical tourism countries for Glaucoma Surgery. Can anyone name a better place to go?" etc.,

Recently I have seen the following message on www.revolutionhealth.com and got inspired to quote here -
"You should call your doctor, 911, or local emergency services if you have a medical emergency.
Thanks for visiting Revolution Health. Please let us know how we can help you!"
I think every health care website should prominently display this message on their websites.
Thanks for the nice Article.
_________________
Prakash
http://www.healism.com
Reply to this comment
by 2webpromotion September 28, 2008 3:50 AM PDT
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