The group of moderators providing direction to other people learning their way around isn’t meant to be an exclusive club, so if you can swing the time and have the motivation to help fellow members of the cancer community, please comment here or e-mail me at west@cancergrace.org.  We’ll also be very eager to have our moderators work with us in the design and implementation of the newer “GRACE 2.0″ version of the site we’re embarking on this year, specifically to make it easier for people to find the information they need.

So thanks again to our extremely helpful and committed moderators, and just say the word if you’d be interested in helping out.

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1) The potential benefit of smoking cessation in patients with lung cancer (focusing on a newsworthy meta-analysis on survival differences between those who did and didn’t quit smoking that was just published)

2) Potential negative effects from post-operative (adjuvant) chemo for patients with early stage, resected NSCLC (based on a forum question generated from a  recent publication of long-term outcomes from the pivotal IALT trial of adjuvant chemotherapy that ushered in the use of this approach as a standard of care)

3) The use of serum tumor markers in lung cancer (based on a question from the forum, but a very common question, about which we don’t have any clear standards)

Those who wish to register for this program can do that through this link; otherwise, we’ll be editing and posting this content in podcast form very soon.

Beyond that, we’ll be doing another webinar on Wednesday evening, February 17th, at 8 PM EST/5 PM PST, with guest faculty Dr. Ross Camidge from the University of Colorado.  We’ll plan to cover the question of pre-operative chemo and radiation before possible surgery for locally advanced NSCLC (based in part on this interesting article on one approach), and I’ll also ask him about his experience of treating patients with the EML4-ALK translocation, since Dr. Camidge is among the few lung cancer researchers who has been involved in the early work with such patients being treated with the investigational agent PF-02341066.  We will probably also cover some additional topics that emerge from the Q&A forum here.  People interested can register for the 2/17 program with Dr. Camidge here.

As always, please feel free to write in with suggestions on topics, people, and anything we might do to make these programs more helpful.

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   The program will start at 8 PM EST/5 PM PST.  Registration is free, but limited.  Click here to register for 2/9 webinar.

   For those of you unable to join for the live program, we’ll be turning this and future webinars into podcasts that you can archive, and we’ll plan to put the transcribed responses to forum questions on the forum threads that generated them.

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But beyond that, this month we’re going to pilot the move toward having some discussions of forum topics in a webinar format, rather than written responses immediately.  We plan to transcribe these discussions quickly and then put the discussion up on the forum.

For now, we’ll see how this combination of some “mailbag” discussion on a webinar and some quick written answers on works.  The topics that we  designate for discussion in an upcoming webinar will have a response on the website saying something like, “This will be a good question for discussion in our upcoming webinar, on Tuesday, February 9th, at 8 PM EST.  Those interested in participating in the live audience can click here for free registration.  For those unable to attend the live program, the transcript of this discussion will be posted as soon as feasible after the program.”

This format will enable discussion of the more controversial, deeper, and more general interest topics to be with a couple of faculty experts.  Importantly, we’re going to plan to have a wide range of experts from the lung cancer community participate in these webinar programs, so the GRACE audience will have the opportunity to hear from a more diverse group than ever before, because a huge fraction of my colleagues are inclined to help but can’t commit to a longitudinal role.  By having the conversation move from the discussion forum to the webinar and then back to the discussion forum (after webinar discussions are transcribed), it will enable us to still have some more ongoing discussion and preserve the opportunity for members to write comments and provide insights to each other (and to the faculty).    One downside is that most of the people participating won’t be continuing in an ongoing dialogue the way that our most valued faculty do, but I believe that Drs. Weiss, Pennell, and some of the other faculty will try to participate as much as feasible, on a longitudinal basis.

Oh, and by the way, we will be planning to do our next webinar with Dr. Pennell a week from tomorrow, at 8 PM EST.  I’ll get a registration link up very shortly, for those interested in participating in the live discussion: we can have the chat function working for questions on the fly during the webinar itself, in addition to the questions coming in on the discussion forum in the days preceding it.

We can see how well this works and adjust as needed.  I think it will be helpful and far more feasible to have a mechanism for GRACE to capitalize on the many experts out there who want to participate but can’t make a sustained time commitment.

One final question: are weekday evenings a good time?  For many of the faculty, a weekend morning, such as 11:30 AM EST on Saturday or Sunday may be very feasible, but that may or may not be a good time for those of you who would be interested in being part of the live audience.

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   Download an application form and learn more about the Summit at http://www.NationalLungCancerPartnership.org/index.cfm?page=summit2010

The application deadline is February 15.

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   I’d be very interested to hear impressions from people who attended.  Was log-in and the opportunity to ask questions fairly straightforward?   Also notable was the fact that our attendance was only in the high teens despite having 50 people registered.  I know a few people had things come up (several kind enough to give us a heads up so that others could take their place), but for any others who didn’t make it in, were there technical issues? 

    Please let us know any thoughts you have, since I believe we’re likely to use this platform much more in coming months and years, but we want to make it as easy as possible.

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    Some people expressed an interest in having pharma companies pay for information we might distill from the forums, of having information provided by actual cancer care consumers be channeled to pharma companies in exchange for support to keep the forums operating.  It would be a system in which more patient information could lead to more funding, so perhaps it could be self-sustaining.  We’re trying to look into that, but I’m not banking on that possibility.

    It’s also possible that a large company, whether it’s in finance or pharma or whatever, would underwrite the costs of the forum, which are a challenge for us but don’t amount to a rounding error for big companies.  By all means, we’ll pursue what we can, and if you have any leads, let us know. 

    But short of those options of continuing the forums by somehow having more money come in, I’m envisioning some changes in how we can offer interactivity without being as time-locked.  Right now, we have a small number of faculty members each spending a lot of time every day, pretty much answering questions on demand.  I know a huge number of people who are experts, and many have suggested that they’d like to help, but very few have the time to spend this amount of time and make the commitment for a month, let alone longer.  However, I think I could get almost everyone I know in the lung cancer community to help in a time-limited way.  Specifically, I was able to list over 60 people I know personally who I am confident would help with this effort, nearly all happy to donate some time.

   What I envision is that we have a question page that just requires members to complete a text field with their question.  We can offer guidelines that questions should be as concise as possible, should include a very brief summary of prior treatments when this is relevant, should not ask us to interpret scan results or solicit for medical advice, and should ideally be broad enough that the answer could be helpful to other people.   We can have these questions all submitted to an e-mail account, where the staff can review questions, in some cases directing people to answers already available on the site, in some settings saying that a question is too specific or outside of our range of expertise, or tell someone that we’ll have their question on the list to cover in the upcoming webinar.  Each webinar can be done at a fixed time, whether once or twice weekly, and sometimes perhaps with a particular focus.  We’d anticipate having one or perhaps a couple of guest experts join us for discussion.  We might cover a brief slide presentation, we might cover a case I flesh out for discussion with experts, and we’d also hope to cover as many questions that came in over the preceding days as possible.   With more than 60 of my colleagues who might be able to do a few of these programs per year, we can cover a lot of ground in a time-limited way.  Essentially, this will be like a radio show, and we’ll probably only be able to cover some of the questions, though we can shoot for covering just about anything that isn’t repetitive and is not an extremely specific question that can’t really help with general ideas about cancer management for others.
      Following the webinar, we’d plan to have the recording made available as an mp3 audio podcast available online and through an iTunes/RSS feed for people who subscribe.  We can have the Q&A transcribed and potentially divided into individual questions that we can “tag” for indexable subjects and categorize for people in folders, so that people can look through folders or search for terms in the forums to find relevant coverage of topics that have already been discussed. 

   As mentioned in the comments after my prior thread on the subject, there are two other things that will be critical improvements.  One will be to convert a huge amount of our subject matter from posts into summary chapters on central topics, which can have links to other summary chapters or to some individual posts that may remain.  But the hope will be to replace 5 posts on the same subject over 3 years with one key summary that is easy to find, and that now can be updated just once or twice per year.  And now more people will be able to find answers to their own questions rather than ask a forum question because it’s so difficult to plow through the smaller pieces of content, where it can be very hard to find what you’re looking for in a folder with >50 posts.

   Along with that is the other improvement we’re going to focus on, which is a good search function.  It’s not nearly as good now as I want it to be, and ideally we’ll have returns of queries separated by type of content, such as summary chapters, individual stray posts, podcast presentations, and mentions in the Q&A forums.

    Those are my thoughts for now.  We still want to hear feedback and new ideas.

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  There are two key aspects of GRACE that I believe are unique.  One is the timeliness of the content, which is often offered, with commentary, almost in real time as new information is presented or published in the cancer world.  The other feature is the interactive component, which is simply not available in the vast majority of cancer resources on the internet.

   The reality is that the forums are very labor intensive and costly to operate.  Though I don’t accept pay for my role, we do pay our guest faculty a reasonable honorarium for their monthly roles, and unfortunately this is not an aspect of the website that we’ve been able to receive grant support to cover.  And unlike the written posts and recorded podcasts that don’t add extra time and effort whether you’re reaching a dozen or a hundred or a thousand or a million people, the interactive format of the forums means that the more people who come to participate, the more time is required and the more support we need. 

   We’re struggling to figure out how best to manage our desire to offer an interactive component with the reality that our time and money to support the forum activity increases faster than financial support for it.  There are a few options we’re kicking around.

1) If enough support comes in, we could keep things going more feasibly, though that’s still not a long-term solution.

2) We are considering the possibility of having people who want to ask questions on the forum be required to maintain a profile of their treatments received and other clinical details, from which anonymous aggregated information could be analyzed and sold in reports to pharma companies. Or people from pharma who might want access to information from patients and caregivers could potentially support GRACE for having registered users answer surveys and polls.  The ability to ask questions on the site would be free but could require answering survey information (or perhaps paying a subscription fee to opt out, though I don’t think many people would favor that, and we prefer the idea that people not need to pay for access to information). 

3) We could possibly integrate advertising that might be very well honed to our unique, highly informed audience, such as advertising about important clinical trials or regional cancer centers, etc., though that’s a hard nut to crack if you aren’t Medscape or another massive website.  I think this is a good idea in theory, both for the people running trials and delivering cancer treatments to reach the perfect audience and for the audience here to find the trials, centers, lab tests, and other help they’re looking for.  However, I don’t know that we can move an advertising industry that isn’t nimble about looking beyond where they already advertise. 

4) Presuming that we can’t get any of the above options that would offer more support proportional to more participants, we need to reconsider how to provide interactive discussion without the same amount of time and effort and faculty support.  This would likely take the form of scheduled chat room time, perhaps a regularly scheduled Q&A webinar like a radio talk show, and/or combining round table case discussions with a period of Q&A exchange among the faculty.  The content of these exchanges could potentially be transcribed, indexed, and made available for people to read, search, etc. on the website.

   We’ve always been proud that we offer the interactive component, but we can’t excape the reality that if grants and donations can’t support our costs, we need to adjust our offerings to stay within our means.  We’re going to continue to look into other alternatives, but I think there’s a high probability that we’ll need to answer questions more intermittently, on a scheduled basis, and perhaps selectively (more reliably answering questions that can benefit a broader audience than answering questions that are very specific to a very individualized case). 

   You’re strongly encouraged to offer your ideas and thoughts, and of course financial support and/or assistance with fundraising would be a help.  We’d much rather grow and offer more than cut back.  In the meantime we’ll keep you posted about any developments.

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It’s only in its second year, but it’s been likened to the Academy Awards of the Twitter world by the New York Times.   There are a wide range of categories, including nonprofit, and voting is by the public.  If you like what a person or company is doing in their field, you can vote for them.  And despite all of the jokes that would be made about me if I accepted an award called a “Shorty” for GRACE, it’s worth that risk for the upside.

Why would we want to be nominated?  Basically, because we’re trying to reach as many people in the cancer community as we can, and right now we’re still a pretty well-kept secret, despite how much our audience values what we do once they find us.  Winning or appearing prominently would allow many people to learn about us and what we do.   That could help a lot of people who otherwise wouldn’t ever know we exist and could help them.

How do you vote?  If you have a Twitter account, you just send a tweet (limited to the magic 140 characters, of course) with this format:

I nominate @CancerGRACE for a Shorty Award in #nonprofit because (52 characters of your own message here)

I’m hoping that some of my twitter followers will offer their support and  tweet a nomination of @CancerGRACE for us (please do it for @cancerGRACE and not my personal address @DrWestGRACE — I’m sure the awards won’t pool them, and this should focus on the nonprofit itself).  Alternatively you can go to the website for the Shorty Awards and enter a vote there in their own formatted text box, which prompts you for the Twitter account (@CancerGRACE) and the category (non-profit) and then asks you for your reason for nominating.  It’ll then prompt you for a Twitter account or ask you to make one.  We’d love it you’d might be inclined to sign up if you don’t have one already (they’re free).

Imagine helping other cancer patients or caregivers by raising the visibility of GRACE and what we do.  We know we aren’t reaching enough people who could benefit from the information we can provide to them.  Your brief effort of a tweet or visit to a website to register a nomination for GRACE could make a real difference.

Thanks for your support.

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1) In addition to some broad, larger groups, there will be a collection of very specific and “hyper-relevant” social networks, with groups for such as patients with EGFR mutations, patients with brain mets, people on tarceva, post-operative, bronchioloalveolar carcinoma, “no evidence of disease”,  etc.   Participants  can find each other, discuss what side effects people have experienced and tips on management, learn about new clinical trial alternatives, and communicate with other people in a similar situation.  Want to know what to expect from whole brain radiation/prophylactic cranial irradiation?  The people in the brain metastases group can provide unique insight.

2) Different online communities have distinct personalities, and these groups will provide a collaborative setting between patients/caregivers and the medical community.  There are other websites where there is a very strong focus on alternatives to the more standard treatment options, supplements, and ideas that are outside of conventional medicine.   The GRACE networks will feature easy links to medical content from GRACE and other sources, with a plan to be run and “owned” by patients and caregivers, but associated with GRACE, medical content, clinical trials. etc.

Our immediate plan is to start five groups as an initial pilot and then expand from there.  These will be a combination of larger, inclusive groups, and some smaller, more specific groups:
Advanced NSCLC
Extensive SCLC
Brain metastases/WBR/PCI
Never-Smokers
Bronchioloalveolar Carcinoma

Finally, these are going to be run primarily by patients and caregivers, so we’re looking for potential moderators/leaders of these and other future groups.   I’ve exchanged e-mails with a few people already, but these groups would benefit from other people motivated to participate and help lead these efforts, so please let me know if you’re interested (in a comment here, or e-mail me at west@cancergrace.org if you’re interested.  Also, by all means, if you know of others who might be good candidates and interested, please contact them or let me know so that we can reach out to them.

I see this as a way for members to have a more direct, active role in collaboration with the GRACE faculty, and also a way for people to connect more directly with people who share similar medical concerns and may be able to complete focused clinical trials more quickly and advance cancer research faster.

We’re very interested in your feedback about whether these types of groups might add some unique value, or if you think they’re just redundant with what’s already available. We’d like to hear your thoughts about the most important next several groups to create. And if you like the idea and might want to help lead a group, let us know!

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