When my daughter's six year old nephew died last year of complications from surgery on top of a primary diagnosis of ALD at Duke University, his mom and dad set up a blog that united a very very geographically dispersed family through a long cycle of care.

It was a form of emotional support that I don't think social workers or clinicians could understand if they did not experience this.

It wove a form of support in the letting go and grieving process that was quite remarkable and also helped the supporting clinicians in hospice at Duke and others in Conway, New Hampshire where the family lives.

The Fire Chief of the Town planned the funeral and had a town escort arrange to bring Bailey home to rest.

The blog to some was like a newspaper story and the people in Bailey's local community who supported the family and his extended family across the US, it was a web of connection that was not obtainable by any other means.

The virtual frontier has been used by the death and dying for over two decades now and the chronically ill. A community of paralyzed people formed a virtual conference to exchange stories on how to survive at home with what insurance and Medicaid do not provide.

I have witnessed people journaling for an audience dying of cancer, who had no family behind and found a sense of belonging from a virtual community that no nursing home or hospice at the time could foster.

While I am a proponent of human touch and high touch, sometimes the web has restored a family connection for some during illness they could not other wise have.

And nothing replaces the human touch that comes with people holding our hands or listening to what's on your mind as you approach death or deal with a very difficult illness.

The parts that some hospitals and some institutional forms of care lost that is now being restored by new communities of care, e.g. http://www.mettainstitute.org
in San Francisco or http://www.pioneernetwork.net that is the national movement inventing a new form of living for all the stages of elder care.

It is through networks like these that blogs are also emerging and people in small towns working hard at their jobs in hospitals, nursing homes and assisted living are learning from others far away at a blog.

we've been doing this for a long time as well, and have over 50,000 patient blogs. it's amazingly powerful stuff. health co's are going crazy wanting to work with people like us.

Great blog entry, but you're comparing incorrect numbers.

CaringBridge has over 60,000 sites; CP has 45,000.

CaringBridge connects over 1.8 million people each month; CP is well below that.

Again, great article on these sites, but the numbers you've used are not apples-to-apples comparisons.

CaringBridge is the oldest and largest service of its kind, and CaringBridge is also the only non-profit service (meaning there are no ads, pop-ups, spam or banners).

Also, as a non-profit, CaringBridge serves and is accountable to families and the community, not to individual owners or shareholders looking to maximize profits -- a couple of key differences I think are important....

Thanks Chris - I've clarified my numbers. Also good to know that CaringBridge is non-profit. I wish you the best of success!

Thanks, Tony for your kind words about CarePages and patient blogs! Great post.

I work for CarePages and wanted to clarify that the 'sponsor' (or providing hospital) for Miles Levin's CarePage is actually Beaumont Hospital in Royal Oak, Michigan. Edward Hospital & Health System is also one of our customers, though. (There are more than 550 healthcare facilities in North America offering CarePages!)

There are actually nearly 60,000 CarePages and 2 million members.

Thanks again!

I'm curious in finding out how important scholarly information is to patients and their families, such as medical journal articles, medical books, conference presentations. Are these resources easy to access? Are they used at all in making or influencing treatment decisions?

To reply to David Sampson, I use medical journal abstracts, which are posted for free from many journals (the exception is often one of the Nature journals, who must make big bucks charging for virtually every article, abstract and the like-I avoid Nature journals).

They are valuable, though obviously some of them are so technical and devoted to the minutiae as to not be useful. The other problem is that it is difficult on occasion to see the 'big picture'. Review articles and long-ish papers from various medical meetings can help fill in the gaps.

They are indeed very helpful in making treatment decisions. When one reads of a low response rate and/or significant side effects, it can add to the treatment decision calculation.

I will say that the government (i.e. medline and other sites that offer a patient and healthcare professional choice) seems to dumb down the information so your average 4th grader can understand it. I always start with the 'health professional' option. It's understandable 98% of the time.

I just wish ALL medical journals had free, full-text access to articles published six months or one year earlier. Some of these unhelpful folks want you to pay $30 for an article from five or ten years earlier!

Ridiculious.

Where exactly does all the money donated to CaringBridge go? Web space is cheap, and maintaining such a site is not at all time-consuming, so there should be few expenses.

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