As many of the members here know, the nonprofit GRACE: Global Resource for Advancing Cancer Education, will be hosting OncTalk’s activities very shortly and, with enough support, expand to a broader range of educational formats and also include additional expert coverage, eventually into other cancer types. Once it has nonprofit, 501(c)(3) status, GRACE will be able to apply for grant support from various sources, ranging from Google and the Gates Foundation to pharmaceutical and biotech companies like Eli Lilly, Genentech, and several others. As companies that produce drugs to fight cancer, drug companies would potentially be the sources most inclined to provide assistance to the cancer community.
But the value of information provided here is predicated on it not being perceived as commercially biased. Even if it isn’t actually biased, we are certainly reluctant to do anything to lead even to a perception of being tainted by commercialism. I and my colleagues here strive to present evidence to support our conclusions, but in the end, we synthesize our own conclusions, and many members want to know what we really think and would do. I think most people here don’t just want a distillation of numbers. So we can point to the data, but one of the strengths of OncTalk and GRACE is that you know there’s a person there providing their insight. But people all have some biases.
So the question I pose to people here is this: if GRACE receives significant commercial support from a range of pharma and biotech companies, would people lose confidence in the credibility of the information we provide? Or would being a nonprofit with multiple sources of support be acceptable? Of course, donations from grateful users are a great help (here), but I think that it will only be possible to grow significantly with larger corporate partnerships. But only if it doesn’t compromise what we offer here.
Please be honest. We haven’t gone down this road yet, so if there is a time to voice concerns, it’s now. Please vote in the poll to the right, and/or leave comments below.
posted by Dr. West @ 9:48 pm link to this post
Loading ...
February 6th, 2008 at 4:33 pm
I support the evolution of this unparalled service, especially to those of us who with limited incomes. Transparency with who the donors are is important. I cited the importance and potential of this site recently in a focus group for lung cancer patients.
Project Inform started in 1985 to give people with AIDS information and perspective about AIDS treatments. Its thriving today serving PWAs nationally and its longivity has depended upon pharmaceutical support. That has not compromised the integrity of the information and perspectives provided. There is transparency of who the sponsors are. PI involves itself in advocacy as well, taking positions to benefit the patient community and sometimes opposing and challenging the positions of its donors.
The demands will grow overtime as more people learn about this site. Take the funding until you get that fat cat non pharma long term sponsor. Thanks. Hank
February 4th, 2008 at 6:03 am
Just an additional note: I was just looking around on the site breastcancer.org to see how it is funded. According to the “supporters” page (click on “corporate” link), it looks like they receive a lot of their funding from corporations:
http://www.breastcancer.org/about_us/supporters/index.jsp
Based on a my (admittedly) brief look around the site, it seems that accepting corporate funding hasn’t had a detrimental effect on its mission.
February 4th, 2008 at 5:11 am
Dr. West,
I’ve voted already, but wanted to add a comment as well. I have no problem with the idea of corporate funding for this site if it is done along the lines of how you envision this to be. Having been involved in a couple of non-profit organizations in the past, I know how difficult it is to raise funds without going farther afield than member donations. Most large corporations have a budget for funds that can be dispersed to worthy charitable organizations, non-profit projects, etc… I doubt that most of them would expect anything in return other than some kind of acknowledgment that they had made a contribution. I don’t see that accepting a donation should have an impact on how the site works, and as one of its users, I don’t think that knowing that there was some corporate funding would change my perception of the worth of the site and the information provided.
February 3rd, 2008 at 8:03 pm
Jean,
I’d be more than happy to highlight how to donate to GRACE. There’s a website at which you can donate with Paypal (you can just use a credit card, or an existing Paypal account if you have one):
http://cancergrace.org/donate.html
or you can send the proverbial check in the mail to:
GRACE (no need to spell out full name)
4616 25th Ave. NE
#300
Seattle, WA 98105
Thank you for your vote of confidence and also for your very helpful contribution!
-Dr. West
February 3rd, 2008 at 6:15 pm
Dr. West,
I do not see how this forum can continue to grow as I think you envision without the support of commercial funding. OncTalk and now Grace has been a great resource for upfront, unbiased information about lung cancer. You have proven to be a very caring, credible physician–passionate in helping others understand lung cancer. I do not think that will be jeopardized with outside funding. We appreciate all that you do.
Jean
Please tell me again how to make a contribution. I had intended to a couple of weeks ago and got sidetracked.
February 3rd, 2008 at 5:50 pm
Ned,
Those were Google ads, so they were just placed there by some algorithm that found words like “cancer” on my pages and placed ads that were linked to these kind of triggers. The site would get some money based on number of viewings of the pages with them, and number of clicks. It wasn’t enough to cover a cup of Starbucks coffee each day, and I spent far more than that just advertising with Google (putting ads for OncTalk when people searched about “lung cancer”, etc.).
I included them because I thought they could perhaps provide some money to offset expenses, and Google did keep track of my web traffic, which was more interesting to me. Because I had no say about what ads appeared, there couldn’t be any bias. However, most of the adds were for things I wouldn’t have advocated, and they provided remarkably little funding support for the distraction and detraction from the site that they probably caused.
I don’t miss them.
-Dr. West
February 3rd, 2008 at 5:27 pm
Dr. West:
Realistically, financial support by the major pharmaceutical companies is probably necessary if GRACE is to develop as envisioned. Any perception of favoritism towards large contributors could be minimized by the measures outlined above and a couple of other precautions:
1. No ads, just a matter-of-fact listing of supporters a la the public broadcasting organizations — NPR, PBS, etc.
2. Clear disclaimers which go beyond the minimum requirements.
I just thought of a question that may or may not have relevance. During my first few months using OncTalk, there was a series of small notices or ads in the right column. One of these as I recall was for a product (book?) named something like “10 Proven Stategies…” which included items that seemed rather outside the medical mainstream. I was going to ask if the presence of the ad meant that you agreed with the strategies listed, but I never got around to it. Now I see the ads are not there, and with my gunbarrel awareness these days there’s no telling how long they’ve been gone. Maybe the history of why they were there at first and why they’re no longer there would be interesting. Aloha,
Ned