First, we’ll have three rotating faculty joining us again this month.  Dr. Nate Pennell from the Cleveland Clinic will be returning, as will Dr. Stephanie Harman from Stanford, with her particular specialty in symptom management and supportive care, and also Dr. Hensing from the University of Chicago and NorthShort University HealthSystem.  All have worked with GRACE before, and we’re excited to have them return.

Second, we are literally in the final steps before switching to the new, better software for the website.  The blog side (all of the post content) will look pretty similar, with mostly cosmetic changes, except that everything will function much better because we’ll be on the latest version of the right software for us… at this point, we’ve really outgrown the clunky outdated work-around version we’ve relied on up to now.  Things like the search function will not only work but will even be able to be filtered by subject, so that you’ll be able to sort and find only the information relevant to your cancer:

(click on image to enlarge)

We’re also about to launch another subject, bringing in experts and content on pancreatic cancer right after the site upgrade.  Because we have all had concerns about the difficulty of sorting through discussions and comments about many different cancers on the same discussion forum, the new forums will be different.  Instead of one big forum with folders for different cancers, each of the subjects, essentially each a different blog, will now have its own attached forum — so there will be a lung cancer forum, radiation forum, coping with cancer, general, etc.  It will take some getting used to, I’m sure, and probably some tweaks to get it the way you and we would like it to run, but the entire site will be far more integrated, rather than essentially having a blog mashed together with a completely separate discussion forum and held together with large amounts of duct tape.  The new forum system will also allow you to search for content in both the blog side (the faculty postings) and the forums for that subject at the same time.

This will mean that our current forum will be “read only” — essentially frozen as it is when we switch over.  We’ll have an easy link to it from throughout the new site, and one of the search filters on the new site will be just for finding mentions of your search term in the current (soon to be archived) discussion forums.

These are big changes, but the site will look more similar than different, and the discussion forum will be the biggest change, but it should lead to everything working far better, and far easier for us to maintain because it’s all part of a standard, commonly used application called WordPress.

And then finally, later this month, we’ll have a multi-faculty extravaganza live from the Santa Monica-based 12th Annual “Targeted Therapies in the Treatment of Lung Cancer” conference, where I’ll do an internet-broadcasted round table discussion and have each of the four great faculty members do a brief discussion of one element of the timely topic of the benefits and challenges of transitioning to a new era of molecular oncology, specifically controversial issues of how we should go about testing more and more patients with lung cancer for molecular markers.  The program is free, and you can learn more and sign up here.

All this in a month that also brings us Groundhog Day and Valentine’s Day? It’s almost too good to be true…

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    Then it hit my why it’s so hard to dispel these perceptions.  Discussing statistics is all well and good, but our brains are wired for narrative stories, as I’ve discussed in the past, and knowing about or even just hearing about a case of someone who had a dreaded complication or had a phenomenal result with a treatment has as much of impact, if not a greater one, than having someone recite stats and trends.  We don’t think in terms of medians and percentages: we want to know how other people like us have done.  People go to our discussion forums or other online communities and ask how others have tolerated the treatment they’re going to do.  We know that people are quite variable in how they do, and we should understand that hearing from a handful of not necessarily representative people online isn’t more predictive than the collective experiences reported in large trials — but we still override stats with stories.

    Scientific training doesn’t make us much different.  As I mentioned in my post in preparation for my TED talk, I can read movie reviews that seem favorable from a lot of people, but if someone I know pans it, that movie drops off my list.  In fact, I might even change movie preferences in line when the people behind me who I don’t know mention that they didn’t like it.   And turning back to medical information, I’ll say that I’m not surprised that doctors are affected by the “once bitten, twice shy” dictum.  If the last person I treated with therapy X had a great result, I’m going to mentally perceive that great results from therapy X are more common than they are, and it’ll affect my probability of recommending it over fine alternatives to the next candidate for it.  On the flip side, if I navigate a patient through complications of a treatment, even if I know it’s supposed to be rare, it remains in my mind and probably makes me less enthusiastic about recommending that the next time.

   I can talk about the statistics of someone surviving a new diagnosis of cancer, but along with telling them all of the numbers, there seems to be nothing like saying “Just yesterday I saw someone who was your stage and got the same treatment I’m suggesting for you, and they’re now six years out and doing great, with no evidence of disease.” (I only use real examples, I swear.)  People light up more from a story, even knowing that there’s a patient they don’t know who has done well and provides hope for them.  I think that’s part of why it’s so easy to be so genuinely happy for people reporting their good results in the GRACE forum pages. Real stories of success give hope to everyone.

   Though oncologists are generally trained to worship the evidence that we might use to guide our decisions, even the most academic presentations often include a set of before and after images of a dramatic response.  We know and even joke that these don’t reflect a representative case, but rather the best case that is often a major outlier, but this is still the mental image that we carry around when thinking about the treatment results.   Evidence-based medicine is great, but doctors brains are wired for compelling stories, too. 

   Finally, there’s a fundamental disconnect between the abstract patient in the world and the real person — you, your spouse or sibling or parent, or the patient in my office.  When doctors discuss patient cases with one another, they’re abstract ideas, to which we can apply the data objectively.  For that matter, we tend to do that on the forums, discussing what the evidence supports and what the best established treatments are (though I think we get just enough of a sense of the person’s narrative to feel more connected and not see a person as a complete abstraction).  But in real life, when it’s a patient in a room with a doctor, our dogmatic view of eivdence-based guidance often erodes as we become more shaped by our particular experiences and our hopes for the patients. Every tumor board or panel discussion at a conference features presentations of patient scenarios that, if they’re honest, reflect some deviations from the textbook answer. For instance, there is no proven value for very late lines of treatment, but we often do it.  We can sniff haughtily about the lack of evidence, but just about every doctor I know is less rigid about following only what the evidence supports when they have real patients in their own practice.  For some even very academic experts, their care of their own patients may really be a veritable free for all with barely a nod to what the best evidence supports.  And because of this, I think that doctors providing commentary for abstract cases creates a fundamental gulf between what we say and think we should do (perhaps because it’s the textbook answer) and what we actually do. 

   In the end, I don’t know that it’s right or wrong to have our story-laden brains guided by anecdotes along with evidence.  I don’t believe it’s ever ideal to have a tyrannical view of evidence-based medicine or nothing, since so much of what we do falls between the cracks of the evidence and just requires judgment.  But being shaped too much by our experiences when that overrides stronger evidence of better choices isn’t optimal either.  Perhaps it’s just worth it to remember how we best process information and accept the fallability of the narrative, trying to use that as an illustration that doesn’t lead us to ignore the more abstract but valid big picture.  And to remember that there’s a difference between how things appear from 20,000 feet and the view on the ground.

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I’d like to kick start an actual volunteer program, suggest a few key roles for people to help fill (and not ruling out the potential for a paid position), but also hoping to initiate a discussion in which people can offer your own suggestions for skills we may be overlooking.  Please consider whether one or more of these seems feasible for you, or suggest that someone you know with the talent, time, and inclination could help out.

Here are some of the areas where we could really use some ongoing assistance, which I don’t think would need to be prohibitively time-consuming for anyone:

1) medical writer/editor — I probably spend 5-10 hours per week poring over content that someone with very good verbal and writing skills would be able to help out with — editing transcripts, reviewing posts for anything from typos to grammatical errors to suboptimal styling.  I also realize that I am not the paragon of writing stye myself, so if there’s a writer or former English major out there who can improve on the clarity and style of our content, it would improve the site and free a good bit of time that precludes me from spending more time developing new content and programs.

2) Social media and online advertising — Denise and I try to participate in social media to help with outreach, but we could do a LOT better. Helping with this could take many forms, from just spreading the word about something interesting and informative on GRACE through Facebook, Twitter, or posting it in another online community to helping with our own Twitter, Facebook, and soon Google+ activity.  Anyone out there know much about online advertising or search engine optimization?  We could really benefit from your help.  We realize that a lot of the people out there who are social media savants are young — if some high school or college student who eats, sleeps, lives, and breathes Facebook needs to fulfill volunteer requirements or just to help make the world a better place, perhaps getting some practical experience in the process, think about mentioning GRACE.

3) Print media and graphic design: We haven’t historically done much in print because we’re so geographically dispersed, and print materials cost a lot to produce and mail compared with digital content, but if you have experience and interest in print media, we could benefit from your help with anything from brochures and flyers to CD jackets.  People with an eye for design would be a wonderful addition for this, as well as for helping improve the visual appeal and functionality of the website.

3) Fundraising/grant writing and event planning — We don’t do enough to engage our wonderful donors, either “in real life” or online.  It would be terrific to have help with ideas and execution of plans for activities like the Race for GRACE, speaking programs, perhaps a dinner event, or other ideas we haven’t done and may never have imagined.  Outgoing people could help with everything from the concept and planning to being there as an extra hand to help with registration on the day of the event.  And though our live programs have historically been in Seattle, I’ll definitely get on a plane to help out if you want to have a speaking program, dinner, local Race for GRACE, etc. wherever you think you could bring together a critical mass of people and energy.   People with experience in grant writing, donor relationships, and event planning would be a slice of heaven for us.

4) Tech brilliance — As I’ve mentioned before, we are in what I’m assured are the final couple of weeks before the entire site is converted to a far more functional version of the ubiquitous blog platform WordPress (and a search function that functions).  This means that not only will many more things function as we want them to, because it isn’t all a product of outgrown customizations, but the website will be far easier to maintain and tweak for people who have experience in WordPress,site development, html, etc.    There will always be things to improve, in both style and function, and it would be amazing to have one or a few people who could ensure that we’re as secure as possible and nimble in modifying the site based on the needs of our community.

5) Moderators: Those of you doing this make the GRACE community a much better place and make it far easier for the faculty to use our limited time as well as possible.  Our moderators have commitments and outside activities that mean that their time on GRACE forums ebbs and flows.  We could always benefit from more dedicated people to provide a warm welcome and supportive atmosphere while also referring others to places where their questions have been addressed.  New potential moderators are always welcome if you feel you could help.

6) Anything else: if you’ve got a talent, Rolodex full of celebrity contacts who want to know how to help, or any new idea of how to contribute, please chime in.

As I said above, though we’d especially welcome volunteers, any of these roles other than as a moderator could potentially be or evolve into a paid position, depending on a person’s commitment and skill set.

Please respond to info@cancergrace.org (until we get volunteers@ set up) and/or add a comment below.  GRACE is a community, and we need to do far better at enabling people to contribute in more ways than (always appreciated) financial support.

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With the new month, we say thanks and goodbye to Drs. Ramchandran, who had to cut out a couple of weeks ago, and Dr. Weiss, who left for a trip to Belize a few days ago but will be back in time to review the highlights from 2011 in lung cancer in a free webinar on January 19th (more information and free registration here), where he has given us the teaser that he’ll be relaying some good news of the personal kind and has even  promised (threatened?) to sing.

For the forums this month, we’re bringing back fan favorites, Drs. Mary Pinder from the Moffitt Cancer Center in Tampa, FL, and Rachel Sanborn from Providence Cancer Center in Portland, OR.  They consistently receive high marks for their terrific blend of great knowledge and an engaging, compassionate “keyboard-side manner”.

Finally, thanks to everyone who participated in our Annual Appeal, which just ended.  We’ll have our final numbers tallied soon, as lots of people are like me and get donations in right at the end of the year.

Here’s to a great 2012 together.  Happy new year!!

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First, I’ll say that I think there are a great many positive features of a world in which patients have access to all of their most important information.  A huge one is that things get missed, even findings that can lead to a timely diagnosis of cancer.   I occasionally review legal files for patients who are ultimately diagnosed with metastatic cancer after having that same cancer actually seen incidentally in a scan from an ER visit for an unrelated issue two years earlier, with the recommendation for follow-up evaluation that never happened because it was missed.  (I only have to look to a patient who saw me this week for a process that goes as far back as 2009 but who wasn’t informed of a need for follow-up by the docs who saw him at that time.)  These are lost opportunities for a cure, or at least a better outcome, because of a system failure, but we could be confident that a patient given a scan report and a good discussion of the need to follow up on a questionable nodule would have a much smaller chance of not getting a timely evaluation.  They can also sometimes detect errors in reports, such as this amusing one of the woman (Xeni, the co-founder of famous and wildly popular website boingboing.net) who found that she was given the scans for the wrong person by finding that the images contained a “ghost penis” that didn’t quite make sense for her scans (warning: some of the language in the story is in the range of lighthearted to indelicate).

In addition, we want to encourage patients to get second opinions, or just to have their relevant information shared by the many members of the medical team who are likely to be involved in their care. As just about every patient in the GRACE community can attest, the management of a medical issue as complex as cancer requires many tests and input from several medical professionals.  It’s all too common for me to have only a fraction of the information I need to provide the most useful guidance to a patient, for my office to be struggling to chase down notes or labs or scan results that weren’t forwarded by the other doctors.  Would it be nice if all of the involved doctors had access to the same unified medical record system?  Yes, and things are moving in that direction, but we’re not there yet, and nobody has a more vested interest in insuring that everyone’s reading from the same sheet of music than the patient.   Patients who have files of their own reports and CDs of their scans at the ready are far less likely to waste visits by having consulting physicians saying that we need to get outside results (or, worse yet, repeat the tests) before being able to offer real insight.

And then there’s the very reasonable argument that knowledge is power.  Patients who have a good idea of their own situation are better equipped to learn the options available to them, whether suggested by their own doctor(s) or not.  As we move increasingly to a world where people look to Dr. Google and other online resources (including GRACE) for ideas, a patient’s ability to frame their options will only be as good as their ability to understand the right questions to ask.

But I don’t think that patient empowerment starts and ends with having the raw data.  As people who have followed the conversations here can attest, it’s a frustrating challenge when patients are handed a report with no context for what it means when their labs fall outside of textbook normal (low blood counts in the setting of ongoing chemotherapy can be expected and “normal” under certain circumstances), and leaving a patient to search for the meaning of every medical term in a report to try to understand the significance is frought with problems.  Lab results, imaging reports, and scans, to be frank, often have a lot of noise along with the signal, and one of the key things that comes from experience in medicine is getting a good sense of what is just garbage clinically irrelevant.  But these kinds of problems can paralyze people who don’t know what findings and what language is significant and what is appropriate to ignore.  Hence the need for patients to also be given the opportunity to understand the information handed to them, rather than having the hand-off of a report absolve doctors and other medical professionals from having a meaningful conversation and answering questions.  And as I’ve said on the forums, it’s simply not feasible to expect that the faculty here can address the case-specific questions of 100 or 1000 patients who are just getting reports handed to them without an opportunity to get their questions answered.

A related question that emerges is the timing of when patients should get their data.  I am in favor of having patients given their own data, but I think that should be at or after the time when they can have their issues discussed with the person best equipped to do that.  I don’t like giving patients news of something as serious as a cancer diagnosis or a feared complication over the phone, and I certainly don’t think it’s appropriate for them to learn about something as dire as this by logging into a computer or getting a report in the mail.

There are still some doctors who want to retain control over the gatekeeper role for the important information related to their patients, but I don’t think that a loss of physician power is a tenable argument anymore.  It’s time for the medical community to accept that the balance of power is fundamentally changing, whether docs embrace it or not.

So I’ll come back to the initial question and say that I do believe that patients should have access to their data, but I think that should be qualified by the condition that they should also have a right and expectation to discuss the results with their doctor in order to place the information into context, and that this discussion should precede the delivery of the raw data.  To me, the raw data is only half of what patients really need.

All of this said, I’m speaking from the side of a doctor.  What do people think from the perspective of the patient?  How important is it to have your own medical data? And should it be acceptable to just get the information without (or before) the discussion with someone who can frame it for you?  Could having the reports alone just lead to more anxiety and wasted time than constructive insight?

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   People comment every day about how helpful our information and the interactive forum is: we know that people reach out to us at all hours, between doctor visits, and to get a lot of additional insight, both from docs and from knowledgeable patients and caregivers who have been down the same road.  So now, at the end of the year, and the end of our Annual Appeal, please think about how we’re working to help a global community of people affected by cancer, many of whom without experts available for them, and donate. 

   Of course, donations are tax-deductible, so don’t wait, and send in a donation or do it online.  We promise not to bug you throughout the year.

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She earned her PharmD at Duquesne University in Pittsburgh before heading to Medical College of Virginia for her residency and then to the University of North Carolina for additional residency and fellowship training, staying on as a faculty since then.  She has an extensive knowledge of the practical issues around drugs and particularly oncology drugs, but along with that knowledge, she’s known as a great communicator: she has won “Professor of the Year” at the UNC School of Pharmacy over and over in the past few years, and Dr. Weiss works regularly with her and strongly recommended her.

She’s going to help out on the forums with drug-related questions, which is right in her wheelhouse, and she might also write a few posts on topics she speaks with patients about.  I’m looking forward to having her participate.

We’re moving toward having a group of “specialists on demand” who won’t necessarily be chiming in on the forum discussions every day, especially if we think there might only be one or a few questions per week that are ideally covered by them, but rather have offered to make themselves available to help address a relevant question that is well within their expertise.  In addition to having someone like Dr. Walko, we’ve got Dr. Loiselle doing that in radiation oncology, and we’re looking forward to bringing in a couple of radiologists to help with imaging questions, and a couple of thoracic surgeons to help with lung surgery topics as well.  I know I’m not the only one who has been very happy with Dr. Loiselle’s guidance when we need him, and it’ll be wonderful to broaden the expertise of GRACE faculty by having Dr. Walko and others bring their own knowledge directly to the GRACE community.

So welcome to Dr. Walko, and look for her on the forums in the near future.  She’s just coming off of a stint on the wards and resting up, learning her way around GRACE, but she’s looking forward to participating.

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Thanks to the many people who alerted me via e-mail about this in the very early hours, so that we could jump on this before the sun came up.   (Oh, and that was quite a treat to wake up to on a Monday morning, I can tell you…) Special thanks to all of you who helped spread the word and whatever updates we could provide on our repair status to our members we share with other websites in the broader online cancer community.  Big thanks to Sean Parr of WebSiteMovers, who dropped everything he was doing on completing our software upgrade to make this fix a high priority; to Denise Brock, who yet again rises to the occasion and coordinates the team when I’m just trying to keep my head above water in the clinic; to Mark Lindsey, who edits our podcasts but also jumps in to provide back end tech support whenever it’s needed; and to Joe Sperrazza, who has been dealing with a lot, but who jumped in to help provide needed oversight (out of respect for him, I will leave it to him to speak more about his situation if and when he is inclined to do so).

   A few GRACE members deserve kudos from all of us, starting with me.  First, JimC deletes about 75% of the would-be spam from the site before I get to the website each day and may be personally responsible for averting a few of these episodes from ever happening (as if he needed to prove his worth here).  Lesley from Tasmania (cosmo72) did some back end sleuthing that led to some terrific insights I relayed to the technical team, because it was over my head but definitely valuable, and Craig also had some constructive thoughts about troubleshooting to minimize the risk of this happening again: we should see if we can bring them in to helping review and improve our security efforts.

   I don’t have all of the answers yet, but I assure you that we’re redouble our efforts to keep GRACE as secure as possible while still preserving open conversations rich with new content.  In the meantime, thanks for staying with us!

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For me personally - - as my Mom’s only child - - I needed to understand what was going on and I needed to get some control over the “information.” I spent my days and insomnic nights surfing the Net - - trying to collect information and to learn what exactly it was that we were dealing with. The information that I kept coming across either was written for a scientific/medically-trained audience (which I am not) or was outdated or was trite, broad, and gloomy. Instead of helping me, I felt that it was slowly suffocating me.

And then came GRACE. . .

To be honest, at first I didn’t really “get” the purpose of GRACE or how it “worked.” I read the blogs and threads, but didn’t quite understand how to search for information.  But, it didn’t take much time before I figured out my way around the site - - and, I didn’t remain a lurker for very long. The thing that was MOST amazing to me was that some of the world’s (yes, WORLD’s) leading experts on my Mom’s exact disease were available to me on GRACE via the click of my mouse (and free of charge). I remember wondering how this could be possible (there had to be a catch). Plus, as I read and learned more, I realized that I had the “latest and greatest” scientifically-tested information at my fingertips. In a reality that very much was spinning out of control, I began to feel a semblance of calm. It was empowering. It was hopeful. It even changed the way in which my family and I communicated with my Mom’s treaters   - - and, in my opinion, it changed the dynamics of our doctor-patient relationship and the level of care received by my Mom.

But, then something even more incredible happened.  As I began contributing more, GRACE reciprocated by giving me a brand new extended family. Through GRACE, I became a part of a very generous and giving community filled with amazing human beings who, like us, had suddenly found themselves unwillingly thrust into the lung cancer world.  Over the course of the past 22-months, my GRACE family has taught me about bravery, about humility, about love, about family, and yes - - about acceptance, loss, and death. I think I am much better equipped to deal with the “bumps” that lie ahead because of these lessons. My GRACE family also has taught me practical things - - such as our beloved Ned’s advice on how to deal with Tarceva-related side-effects (particularly with regard to the rash and nail-bed issues), Judy S.’s delicate advice on how to beat treatment-related constipation, and Simon’s brilliant reminder to all of us that each good day should not be wasted - - that it should be “lived” and “lived well.”

We are a unique community here. Our commonality is a devastating disease. But, I am constantly humbled by the generosity and encouragement I find here.  As I often have said in my posts, I feel the love and concern that we “Gracers” have for one another just ooze through my computer screen - - and it’s real.

As many of you already know, GRACE’s “Annual Appeal” currently is underway (through the month of December). Some of you recently received a letter from GRACE in this regard (a PDF copy is attached here) and know that as a non-profit, GRACE relies on donations to continue doing what it does. I am asking each of you to please make a donation to GRACE. No amount is too small (or too large ;o) ). Any amount is greatly appreciated. The red “DONATE” button on the top of your screen will take you to where you need to go to do this.

I know that there are many worthy causes out there that deserve funding. But, for those of us who are or who have been dealing with lung cancer, there is no better cause (or place) than GRACE.

Much love to you all. . .and thank you,

Laya

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