I just wanted to give a few updates. First, thanks to everyone who voted on topics for the posts. I promise I’m not ignoring them — it’s just that my ASCO presentation and all of the major travel around the meeting, plus coming back to a backlog and now being on call this weekend, have left me without the opportunity to do the research. I should be able to get at least 1-2 of the top choices done in the next week or so, and I’ll keep working my way down the list. Don’t forget that you can suggest topics, as a comment after this post or the one in which I outlined the “vote for post topics” referendum.
I can’t help but notice that I’m the only one using the avatar function on the forum. It’s not that I don’t love looking at myself, but I’m getting self-conscious about having all of the pictures on the site be of me. My guess is that most people don’t really think of the forum as a community like LCSC, since most often it’s people raising a question or two to me, so I imagine people don’t feel like leaving their personal info, whether it’s their location or a picture (not necesarily of you, could be your family or the peace sign or whatever), or their history. Maybe the pixel limits on the avatar are too much of a problem, or it’s just a pain. If you are interested and haven’t gotten around to it, please do, so I don’t feel like I’m the only one dancing at a party. I can just take down my picture and we can agree that these features aren’t really helpful here. That’s OK.
Finally, I wanted to let people know that I’m in the process of turning this effort into a non-profit company dedicated to cancer education for patients and families primarily (also welcoming physicians if they can join in), from cancer experts. The fact is that most of the support for public information is earmarked for 501(c)(3) non-profits, rather than “marketing” or promotional budgets, which are very restricted to what the FDA has approved as a message. People can get that from commercials and the drug company websites. Besides, what I’ve been trying to do is really along the lines of a non-profit concept all along, but they take a lot more time and money and oversight to initiate and continue to run. But I think there are so many great things to do, not just in lung cancer but also expanding to other cancer subtypes and getting other experts involved as well, that it’s worth developing this into a bigger effort and working to get funding from not only many of the biotech and pharma companies but also charitable foundations like Google.org and the Gates Foundation that I have to imagine would be eager to support work like this that is so needed and helpful for people around the world.
It will take a few months to go through all of the paperwork and application to the IRS, but I’m in the process of working on that. I’m thinking about calling it the Global Resource for Advancing Cancer Education, or GRACE, but if people don’t like that or have other suggestions, I’m open to them now, before the paperwork is done. And if people have any special skills they can offer — if you happen to work as an editor of a major newspaper or are a brilliant public relations person or something — I’m happy to avail myself of any skills other people have that I don’t.
My hope would be to have this non-profit include everything offered here, but with additional features, specifically more content from other experts and including other cancer types so that this could be of broad interest to the cancer community. I’ve spoken with many people here in Seattle, including social workers who think it will be great to integrate info on social services and support for cancer patients, and people at Gilda’s Club, who raised the idea that we could have a linked ring of services all connecting from education to social to information on clinical trials, etc. So that’s the plan: I think this can develop beyond that is just me doing my thing, into something that can have a wider positive impact in the very large community of people affected by cancer.
posted by Dr. West @ 9:31 pm link to this post
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June 9th, 2007 at 5:58 am
Interresting.
When I told our oncologist about your efforts on this web site he said ‘Good for You!’ and I ditto that too.
It was the pixel limits on the avatar that stopped my initial avatar upload attempt; just couldn’t find the right picture and crop that looked good. I’ll try again.
June 9th, 2007 at 8:32 am
I will endeavour to figure out how to post a picture - I will get my hubby to help when he gets home from work (I admit I am a little computer challenged at times!!!).
I LOVE the name GRACE as the meaning of the word fits just perfectly. Just when I think this site can’t get any better - you prove me wrong again!
When I told a lady who was just diagnosed with LC about this web site she was floored - she could not believe that any doctor in this world would take the time to provide answers/opinions/informtion to the general population. It took me awhile to convince her that it was indeed true and her only comment after that was “That man is a gift from God” and she was absolutely right!
You are; however, the gift that keeps on giving! It would be wonderful to have other physician’s/sources who deal with other types of disease processes as well, as there is a definite need for this type of access to information.
Linda
June 9th, 2007 at 10:12 am
Hi Dr. West
I love the idea of pic’s, please don’t take yours down, It is so nice to put a face with a name, I am going to try to put a pic up too, as soon as I have a minute to try to fiqure out how! lol
June 9th, 2007 at 12:39 pm
I think the pixel limit is a real problem. If people can’t work within this limit, I’ll ask my tech friends about whether there’s a way to loosen the restriction to make it easier. If people can do the avatar as it stands, that’s great.
June 9th, 2007 at 5:57 pm
Dr West, Wow! I am so grateful and impressed with you and this site. And now having expansion of the site plus the non-profit status–how could it get better. You and this resource has been invaluable to me personally as I am sure it has been to so many others. Please don’t take your picture down. I like putting names to faces. I just don’t know how to do it myself or I would be glad too. I need Steps 1-2-3. I have not been able to find where the avatar is. I also want to say that GRACE seems to be a perfect name. In my own life I often use the word “grace” synonomously with strength and I believe education and insight from others like yourself does just that - gives strength! Thank you for all you do (Idon’t know how you do it all but Thank You) Debbie
June 10th, 2007 at 1:09 pm
Dr. West, All of your ideas for developing the site are great! I especially want to vote for a collaboration with Gilda’s Club. As a caregiver, I went for a new member’s orientation yesterday, and think it’s going to get me through a lot of tough days ahead. Membership in Gilda’s Club is free, and thus perfectly in line with the spirit of Onctalk. Free and valuable support for people going through a hell of a time.
June 10th, 2007 at 5:13 pm
I love Gilda’s Club, have lectured there a few times, and it’s a place where my wife and I try to donate each year. A truly fabulous, worthy cause.
June 11th, 2007 at 8:35 pm
Dr. West:
The concept you outlined for a nonprofit, somewhat like OncTalk but expanded to include other cancer subtypes and other services, is indeed timely. The Internet has become a major source of information and communication for a huge number of people throughout the world. And the acronym GRACE, with the words it represents, says it all.
I’m not clear how you envision the current OncTalk to fit in with the new organization — be replaced by it, be incorporated into it, or continue separate from it. OncTalk is a terrific name, and it would be a shame to let the name go unused. Perhaps OncTalk could be the name of the forum portion of the new entity, the place where oncologists from the various subspecialties communicate directly with the members like you and Dr. Labriola do here. Then other resources and features could be grouped under other names, co-equal with the OncTalk feature and all under the overall GRACE banner. Just a thought.
I must admit that one thing concerns me. Is it really possible to find enough practicing oncologists who are willing, able, and temperamentally suited to do for their subspecialties what you do for lung cancer? To be truly effective, they would need to view their forum duties as a significant responsibility, on a par with seeing patients and everything else that’s required of a physician. I believe you’re pretty close to unique in that regard — that’s not intended as a compliment that you need to deflect, but as a statement of fact from my perspective. I get looks of disbelief when I explain to people how you answer questions one-on-one in a clear and concise manner, objectively examining the various options, all without stepping on the toes of the individual’s regular oncologist. It’s really quite something, and I hope I’m wrong in my concern that others can’t do it almost as well.
Mahalo (thank you) and Aloha,
Ned
June 11th, 2007 at 9:14 pm
Ned,
I’ve been thinking about all of the issues you raise, and I agree that there are a few things to work out. I am not exactly sure whether OncTalk would be incorporated as one facet of what GRACE does, or whether the format would be used there and it would be run independently — the danger with that being that unfunded OncTalk would potentially become the (literally) poor cousin that gets less attention. I will need to discuss this with the lawyers who have an expertise in what can appropriately be done as part of a non-profit enterprise. My vision would be that GRACE is a blanket operation that could be a mechanism to fund many educational programs, including OncTalk but also several other, new approaches for patients and families.
I also realize that finding the time isn’t trivial. As you’ve surely noticed, I haven’t been able to frequent the other websites like LCSC or LCA or the ACOR e-mail lists that I do think provide great value. That’s not because I don’t want to, but just because it’s hard to do everything you’d like to do if you had the time. This site certainly takes a lot of time, and it’s becoming hard to spend as much time in my practice and still do what I want to do here. There are trade-offs that I’m still negotiating — I enjoy doing this and would love to manage to get my time covered so that I don’t have to choose between doing this work and making a living. What I envision is finding just 1-2 editors for each cancer subtype, most likely people from an academic environment who have more time freedom and have the expertise (and could use some financial support). I am also envisioning having a contest where junior faculty and fellows in training write a post on a subject in which they have expertise, then awarding some prize money to the best ones, which would get used as posts for OncTalk. This wouldn’t generate lots and lots of them, but it may be a way to identify a few people who may be interested in spending more time doing this. Also, it may be more feasible to provide a modest amount of payment to a wide array of experts who could do individual posts on their particular expertise (their own trial, for instance), which wouldn’t be a major commitment. We could then focus on collecting a wide array of topics and experts to cover them, leaving the Q & A to a few people who would be the ongoing contributors on the forum (which takes time, but at this point not an unmanageable amount, particularly if generating content for posts was covered differently). I’m still musing over these options; while I recognize that the right people will be hard to come by, we only need to find a few, and if there’s some funding to provide support for them, it will be easier.
Ned, thanks for your very thoughtful comments, as always. Please keep them coming (you and others here). I need to go over all of these issues as plans take shape. And I think some of the best ideas may not have been thought of yet, by any of us.
-Dr. West