In the last couple of days I’ve learned about a few new online resources that are likely to be helpful for cancer patients and/or family members.  One of these was suggested by OncTalk member Carlos on the Discussion Forum, who started a thread on a new website called OncologSTAT.  This site was developed by the publishing company Elsevier, and the website aggregates oncology news, journal articles, a few expert interviews, and some blogs.  To the credit of the site, they cover a wide range of cancers and are led by a very highly regarded advisory board of national leaders in many aspects of oncology.  In that sense, it’s different from what I’ve been doing, since I’m so focused on lung cancer topics.  However, for a site that is only a few months old, there’s an admirable amount of content.  In particular, giving me the opportunity for full access to some of the journal articles from Elsevier that I don’t get myself or through my institution is very valuable (because many of their subsciptions are at a price point that is somewhat between comical and surreal).  they have pages for recent information as well as cancer-specific pages, like this one on lung cancer:

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There are several links to news pages as well as articles on epidemiology (who gets this disease and why), screening and prevention, and of course treatment.  Thanks for the tip, Carlos.

   Also, I spoke at a meeting in San Francisco over the weekend, called the 3rd Annual Oncology Congress, a general review of just about everything in oncology for a general hematologist/oncologist.  The faculty dinner included a fundraiser for a group I had heard of but am still learning more about, called CancerCare.org.  They’re a non-profit organization that has been around since 1944 and provides a wide range of social services as well as educational programs:

I’m embarrassed to say that I really didn’t appreciate the scope of what they do, because they’re big, reaching 1.6 million people through their website last year (we’ll just say that this slightly exceeds my readership and leave it at that) and directly working with about 91,000 people over the phone.  They do a lot of financial and social work, as well as counseling, and they also conduct telephone-based educational programs.  These programs are also archived as downloadable mp3 files so that you can listed to them on your power-walk if you missed the live version of the conference.  They also have downloadable educational booklets on many cancer topics, including a good general introduction to lung cancer, and many other features. 

   So this got me thinking that if I can just by random luck happen to find two useful websites within 24 hours, how much terrific content is out there that I don’t know about.  I’ve learned about many, have links to several good resources, try to spend time at the Lung Cancer Support Community, LCA Survivor’s Community, and in the ACOR online lists when I can (and I know I’m becoming a terrible correspondent – I’m sorry), but I am sure I haven’t exhausted the supply of useful resources. 

   I’m asking if people can describe some of the internet resources that they find most helpful, particularly those not listed above or on my “Other Resources” page.  Why?  Because there are many members who are doing an amazing job ferreting out terrific sites that the rest of us don’t know about, and we can create something approaching a master list of great online resources.  I’m going to be doing a few lectures around Seattle on internet education opportunities for patients and families, and I want to be able to point people in as many good directions as possible.  Finally, the cancer education non-profit I’ve been talking, the Global Resource for Advancing Cancer Education (GRACE), is having its official formative meeting this week.  Here’s the logo, so don’t tell me if you don’t like it:

We’re going to be brainstorming how to expand the OncTalk format to other cancers but also will be trying to determine what kind of educational content is already out there and what is still needed.  I see a lot of very general cancer information, relatively little very timely new information except for the sound-bite media version (New Treatment Promising in Lung Cancer!! Trial in 12 People Deemed “Huge Success” by Company’s CEO) designed to generate PR and a stock run, and few opportunities for interaction/Q&A.  I’d love to know what people would like to see that isn’t out there…thinking about chat room “talks”, interview transcripts and/or audio files, video presentations (live and/or archived), actual print journals, live meetings for patient-oriented cancer review conferences (1-2 major cities per year? maybe even a lecture series on a cruise?). 

   I appreciate the comments people leave acknowledging the amount of time I spend writing posts and answering questions here.  I have my expertise in lung cancer.  But many members have the expertise of actually being the consumers for useful information and directly experiencing what resources work best for them and may be thinking of their own wish list of what would be helpful but isn’t already there.  GRACE will have the motivation and hopefully enough support to provide much more information than I’m able to do as one person here.  We don’t want to start programs only to find that another site has been doing this better for the last few years.  But if people have ideas of something new that people would actually find valuable and use, we’ll try to make it happen.

THANKS!

PS — a few people have already e-mailed or otherwise contacted me about their desire to volunteer.  If you have the inclination and any skills (technology, fund-raising, remote education) or business opportunities that would be helpful for a fledgling but high-minded non-profit, please let me know via e-mail (west@onctalk.com) or in your comments below.