nathanmichael
Today I met with Nathan Grey and Michael Mitchell of the American Cancer Society. Nathan is working on building their International network and Michael is in charge of the Futuring and Innovation Center. Randall Moss, who I met at ETech pointed them my way.

My mother had cancer for decades before she passed away and my sister and I struggled much of our lives her cancer in the family and dealing with a variety of issues: financial, social, medical and psychological. I remember using the American Cancer Society web page when I was looking for help online. The idea about using blogs and social networking tools to provide more access, dialog, information and support for people who are suffering from or are helping people who are suffering from cancer is such a great idea. The idea of trying to get more people active in campaigns to push policy issues is also very interesting.

I promised to noodle about some thoughts and get back to them, but if anyone has any good ideas or links to resources or blogs about cancer that might be useful too look at, that would be great.

I already gave them the basic advice, make their site more permalink/blog friendly, ping a pinger sites when they update, try blogging themselves, etc.

23 Comments

Funny Joi, I came across Dan's Cancer Blog last week - see it at
http://www.mustard.com/myeloma.html

Also, if you google for "cancer blog" and "cancer weblog" you'll find lots of good examples.

I think there's a huge opportunity for blogs to do good in the general area of health.

I've had a similar experience to you Joi. There's definitely a need for blogs with a focus on families of cancer sufferers and cancer victims.

Joi,

The doctors discovered that my mother has colon cancer 6 months ago. I am very much interested in anything you (all of us) can find and do in this field.

It seems that cancer has always been a part of my life. It took my father when I was an infant. I've worked as a caregiver to the terminally ill, most of them being cancer patients.

The idea of taking blogging, or more to the point, sharing information in a timely and interactive fashion and moving it into areas where it could truly do some good, where it can truly matter is amazingly powerful. It is also, now that I think of it, the next logical step to take after mailing lists and WebMD.

Think of it, millions of the sick, huge organizations like ACS, various AIDS organizations and so on ad infinitum, all exchanging knowledge, experience, strength and hope.

It is clear that blogging connects people in profound ways.

But this has the immediate potential of eclipsing all of that.

All the silly arguements over tools and protocols and data formats... all that work...

Damn, Joi. It wasn't just wanking. It really was for something, wasn't it?

The people who laid the cornerstone for this should be very proud indeed. I hope they see what they have wrought.

I do.

my father was ill for 3 years before he finally died of colon cancer. it was because of his illnes that i became interested (by necessity) in the internet. even six and seven years ago, the information that was available online enabled me to feel confident that my father was receiving the best possible course of treatment, and when he wasn't, the ability to intelligently suggest otherwise to his doctors.
the online forums and bulletin boards at that time were somewhat limited in their scope, blogs and social networking tools would undoubtedly have improved his and my family's understanding of this terrible disease.
the most comprehensive resource that i found (bear in mind this was 6 years ago) was the national cancer institute's site, and their PDQ documents.

http://cancer.gov/cancerinfo/pdq/

I am involved in a start-up in the UK that is in the early stages of developing a platform for treating cancer. I hope to be working on the project when I return to the UK in April.

Blogging the development process might be valuable, but I am not sure how our partners/VCs will want to control the release of information. I will certainly suggest it to them.

I would find a number of cancer bloggers and organize them into a community, similar to what I am doing on http://www.infosecdaily.net/secblogs.html and what I am interested in doing in public schools. I think that communities such as this would be an amazing support system for those suffering from cancer.

...and raise general awareness about cancer.

I recommend BBC Journalist Ivan Noble's "Tumor Diary" at http://news.bbc.co.uk/2/hi/health/3497174.stm

It chronicles his nearly 2 year battle with a very stubborn brain cancer in much depth but adds the story about getting the most out the life he has.

A big part of his appeal is that he's easy for younger folks to relate to as a 30-something, intelligent, newlywed and new father.

Here's an example of a disease-specific support site for victims of a rare disease: http://www.ramsayhunt.org/ . It uses a BBS format, rather than a blog format; in most cases BBS or forum software is probably more appropriate than blog software, especially since blogs don't lend themselves to continuing discussions, as comments fade off into the ether as the blog rolls down.

One problem with many disease victim/caregiver sites is their tendency to veer off into crackpot cures, conspiracy theories about how the medical profession and the pharmaceutical industry is surpressing treatments, "alternative medicine," rumors, and the like. Actually, an even bigger problem is the way complete diseases that are non-existent and bogus get traction and take on a life of their own, like chronic fatigue syndrome and its ilk.

Rather than starting up their 'own' blog, have the ACS considered just adopting one or several that already exist? It seems that there is a rampant disease among charity organisations to always have one's own project and never to work with other people.

Given the huge number of people who are involved with cancer, I think you may find it difficult to make a blog (or even a BBS) format 'work.' On the other had, setting up a blog/BBS *for*doctors* to use would be revolutionary. It would allow them to evaluate new research or trends as a community in an informal way instead of formally at conferences and the like, which only happen sporadically.

On a lighter note, check out that immaculately posed photo. Did Nathan and Michael do the 'good cop, bad cop' routine?

Dave, yes. I suggested that they first make their site "blog friendly" and that they try to read and get to know the other projects and blogs in the space. I think "blog awareness" is the first step.

Ref Noah's comment above: *..Actually, an even bigger problem is the way complete diseases that are non-existent and bogus get traction and take on a life of their own, like chronic fatigue syndrome and its ilk.*

Noah, In future, I suggest you check your facts and be more thoughtful about what you communicate. Your comment is insulting to medical and health/care professionals, a countless number of patients around the world and millions of chronically ill and profoundly disabled children and adults suffering chronic fatigue syndrome (aka CFS/CIFDS/ME/PVFS). Shame on you.

Your comment is especially cruel and insensitive because not only don't know what you are talking but you feel free to publish such ignorant statements (for whose benefit, I cannot imagine) without any sense of care, understanding or compassion. Your wicked comment made me cry. Uncaring and thoughtless people like you, making harmful ignorant comments, cause much hurt. Here's wishing you the best of health for the rest of your life.

Peter Small has done some interesting thinking on bottom-up matching of patients and clinical trials.

http://webseitz.fluxent.com/wiki/PeterSmall

http://www.duckling.me.uk/archives/000331.html

I don't know how to use trackback. This article and its comments have made me want to write more about my own experiences. Cheers. :)

These comments are very helpful.The more feedback and ideas you give us the better our chance of doing some thing meaningful.We want to make this a vital tool in the public health arena and will spend the money to get the right people connected to and behind it. The volunter health movement is a natural system to move it forward but we can not move it without a partnership with the Blogging community.

While it's not a blog, ACS does have an online community for people with cancer, family members, caregivers, etc. It's called the Cancer Survivors Network. You can get there via cancer.org or directly at http://www.acscsn.org. You can listen to radio-style interviews/discussions with cancer survivors of various stripes. It also has discussion boards for dozens of cancer types, as well as a chat feature. People can also make sort of mini home pages with info about themselves, artwork, etc. And there are links to support groups, organizations, events, etc. Check it out.

As I read this discussion about the use of blogs to communicate about cancer, any health issues, or any issues at all, I wonder: how did usenet get erased from our memories?? there are still thousands of usenet groups where people with everything wrong with them and right with them are talking to each other.

Is there anything BETTER about "blogs"?

Signed,

on the 'net since '90

Liz:
Barrier to entry is lower. Weblogs are web-based. Usenet, while agreed a great platofrm and environment, seems to have suffered froma cognitive barrier in terms of User Experience, mainly due to a complexity ceiling: "too many groups! The list is too long! How do i find anything? Oh my there is so much pr0n here! Yuck, I'm outta here!"

Once we figure out and implement comment threading and subscribing, weblogs will get somewhere near the "goodness" of Usenet.
:)

Full disclosure - I'm the guy in charge of doing this at ACS.

But, I hope you all find this useful. At ACS we also are very involved in government relations and campaigns to further investment in research. Check out some of our advocacy efforts at cancer.org/takeaction. Or begin receiving our e-newsletter at acscan.org/news.

Just to let you know i found this great place to make holiday cards. They are usually like $20 but free if you click on this link. You can design your own to make that one person feel better. If your interested

http://www.vistaprint.com/vp/gateway.aspx?s=9171591673

The treatment of cancer is a big problem in my country, there is no proper treatment facility for the patient, and if available they are very expensive I think it is right that it seems that there is a rampant disease among charity organizations to always have one's own project and never to work with other people.


Yeah in our country cancer treatment is big problem, poor and the people who are not financially strong can face many trouble because it is very expensive treatment. I think this type of blog can help the people.

Leave a comment

About this Archive

This page is an archive of recent entries in the Business and the Economy category.

Books is the previous category.

Computer and Network Risks is the next category.

Find recent content on the main index.

Monthly Archives