Dr West, You bring up some interesting points here. I believe part of the problem per fund raising has to do with your targeted audience. Most of us with lung cancer are so tapped out–physically, emotionally and financially. I could be mistaken, but I am guessing that most disease specific non profits are funded by either long term survivors (and lung cancer has too few) or by someone touched by but not suffering from said disease. Your audience is primarily people fighting lung cancer and/or their caregivers.
I believe that INSPIRE is funded in large part through the mining of data, so that is always an option. I prefer, frankly, relevant advertisements, which feels less invasive. My guess is that they, the companies which would advertise, would be more attracted to the educational component of your posts rather than the forum. As a participant, the forum, and the fact that it is free (not a word usually associated with medicine) is a big draw and certainly unique. However, I don’t think it would be a bad thing to have scheduled chat rooms. It might actually allow for more concentrated dialogue in real time, as it sometimes is awkward to join a ‘conversation’ days or weeks later. I am also intrigued by the idea of chats or forums devoted to particular subjects and perhaps you could also have a place where participants could suggest topics for future postings.
Anyway, I hope you figure it all out and that you can keep it free to all–such a rare (and generous) thing.

Linnea

It’s a pity to hear this, but understandable.

Some suggestions

*Charge a lowish annual subscription fee for right to ask questions on forums for those who don’t want to take part in any commercial use of info supplied (frankly the more direct info which goes from users to pharmas the better, so No 2 could be quite an innovative idea, but others might disagree). I would personally prefer not to be made to pay to opt out.
*Narrow the focus of topics covered overall on the site
*Specialise on one or two topics each month so you can use faculty members expertise more economically
*Encourage more ‘free’ content from experienced patients and care givers (how might the new navigation teams fit in here?)
*Reduce the timeliness of forum answers a bit if it can be done without major loss of impact.
*Aggregrating a series of Qs on similar topics once a week and doing a faculty Q and A would potentiallly add value to the material and enable its marketing.Are there US medical journals/health mags/websites which would pay to publish such material in article format.Could publications obtain advert sponsorship for them?
*Further investigation of publishing/marketing of podcasts and other site generated info may be worth doing as publications are increasingly seeking ‘freelance’ suppliers of material, especially specialist stuff, and cutting out the middle man (ie the more generalist journalist.)

Such publishing and marketing would also help in promoting the activities and raising awareness of CancerGrace.

Incurable optimist

Following the ideas posted by Incurable Optimist and Dr. West:

I would be willing to pay a lowish annual subscription fee for Forum access (in addition to regular donations to the site). The access provided through the forums is tremendously valuable.

Options 2 and 3 offered by Dr. West are also acceptable. I favor Option 3, but would also be willing to answer BRIEF, well-written, confidential surveys for pharma (part of Option 2) — as long as the info was NOT used to contact/solicit from other cancer patients, their families/caregivers, or me.

If other options are not feasible, I have no major problems with Option 4, and understand the need to answer questions more intermittently/selectively. I am spoiled by (and truly appreciate) the immediate access to experts provided through GRACE. I would prefer that this continue, but understand if it has to be restricted somewhat.

- Catharine

Catharine

These are all good thoughts. My intent in posting the dilemma was both to be transparent about where we are and give some notice if things change, but also importantly to solicit for ideas.

A few things we’ve learned is that while my colleagues are generally extremely supportive of helping in a limited way, it’s the rare person in the field who has the time and ability and motivation to remain committed longitudinally. And while we’d love to have everything be on a strictly volunteer basis, you can’t really dictate expections when someone is volunteering their time — so you get what you pay for, so to speak. Our most valuable faculty contributors devote more time than absolutely required. Like me, I think they feel a certain labor of love aspect to it. Though we pay guest faculty, it’s not something you’d do just for the money. But relying on a volunteer longitudinal commitment probably isn’t in the cards, nor do I think we could solicit for a meaningful amount of ongoing contributions on a volunteer basis and expect it would work, at least not for the busy experts in demand from all directions.

I think it will work better as a free service than as a subscription, and despite the few votes here for possibly paying a modest subscription, it kind of goes against what we wanted to offer, and I think that the other 99.4% of users who aren’t chiming in wouldn’t really pay. One unfortunate thing I see about “free” on the web is that people are most often inclined to accept free content of lower quality than pay for higher quality. I’m afraid we’d lose 99% of our audience if we charged $5 per month, so now we’ve changed our ethos and our model and didn’t solve the financial challenges.

I think moving toward a system of more fixed times for Q&A is likely to work best. I can get colleagues to commit to an isolated 60-90 minutes every few months. We could potentially have topic-specific programs, possibly integrated with the networks (like one on post-operative therapy coordinated with a social network for that), and also perhaps have programs that are more general.

More later. In the meantime, I appreciate people’s thoughts here. I don’t know that we’ve already arrived at the best plan, and I’d like to brainstorm the possibilities openly.

Dr West

Hi All,

I’m still fairly new to the GRACE community but I wanted to add a few things to this conversation as well. I’m actually a Business Development Officer for a large University in the Pacific Northwest and prior to this position, spent some time managing two corporate fundraising programs for a big non-profit organization on a state/provincial level. My focus was actually online fundraising, which has really taken off the last couple of years, and one of my pet projects back then was to work with a web team to revamp the website (to make it fundraising-friendly). I guess I’m also a fundraiser at heart.

When my mother was diagnosed in November with Stage IV adenocarcinoma, I literally spent over 150 hours researching the latest news and information, and GRACE was the most amazing resource; so unique because it offered such an amazing service with the articles and doctors-forum interactions. But I couldn’t understand if and how sustainable the model was, because with more and more people finding out about the site and posting on the forums, unless Dr. West is Superman in disguise (although it seems like that at times), it realistically can’t work unless there’s more and more doctors involved (and understandably, there are fixed costs that would keep going up). If revenue flatlines or drops, services the following year take the blunt of it. This holds true for any non-profit.

But what I think can be done is to make this website, and what I would call the stewardship of donors, smarter. That’s why non-profits have full-time employees dedicated to Development. Here are a few suggestions just off the top of my head:

A) As someone mentioned, develop FAQ’s with answers to the most commonly asked questions on the forum (and tack it to the top of each forum listing) - I think one way to alleviate the time doctors spend on the forums is to shift that to the visitors, so that they may not even need to ask questions if it’s already been asked recently

B) Simplify the forum - by that I mean reducing the subcategories so that it’s easier for visitors to find similar threads and posts that have been asked by other people and will answer their questions (meaning too we would need thread subjects to be more relevant as opposed to “help” or “question for the doctors”)

C) Easily accessible articles and podcasts, so people can read about something like Tarceva and know that it’s effective for EGFR mutational positive people, but also used for EGFR negative people and why that is. The key is ‘easily accessible’ so that people are pointed to the article first before jumping onto the forums

D) For stewardship of donors (I could keep going on website improvements but I’ll stop for now), let’s focus on ease of donation (ie. have people sign up for monthly reoccuring credit card charges, choose a box with suggested donation amounts, develop a better recognition program for higher level donors, look into simple e-newsletters and e-blasts that provide survivor stories and latest news and solicits donations from everyone who has signed up an account on the forums, corporate sponsorship, planned donor gatherings/events, targeting individuals, focus on estate gifts, etc.) I actually have too much to write about so I’ll stop here for now.

While I believe that the current model is unsustainable from a fundraiser’s perspective, I think we can tweak it to make it smarter and more effective for donors so that the spirit and mission of GRACE is sustained. I wouldn’t mind helping, I think what I do is different enough that it allows me to help, but I don’t want to impose either. You’ve done wonders for this community - I hope that we can come together and help GRACE now too.

tanny

Though many posts on the forum can seem common, there are just as many that are harder to find information on and this is where I would not want to see the forums cut out. I like the idea of the surveys and any type of advertising for the medicinal products used in treatment of lung cancer. Hoping things can be worked out since you offer so much to so many. Take care, JC

cards7up

There are some great ideas here. I was especially impressed with tanny’s comments — if those were suggestions “just off the top” of the head, I’d love to see what would emerge if tanny actually put some thought into the subject!!

For my part right now, I’d like to expand a bit on the chat idea. The most effective chat sessions I’ve been involved in were NOT the typical free-for-all, with multiple questioners stepping on each other trying to get their questions in while previous questioners were trying to ask follow-ups, and others participating mainly because it was fun and exciting. Rather, these sessions required questions to be submitted to a moderator no later than a specified time prior to the event. The moderator distilled and organized the questions, then presented them to the CEO/expert/guest in a logical and controlled manner during the chat. The participants followed the dialogue between these two persons in anticipation of seeing their questions (or derivatives thereof) being presented. This format was somewhat like a radio talk show in which the screener asked the questions instead of putting the individual callers on the phone. It was very efficient and allowed for a large number of well-stated questions to be addressed.

For GRACE, this type of event could be done once or twice a week in chat form, and periodically expanded into a webinar with additional faculty involved. The moderator function could be performed by a member or by a medical resident/fellow, and the event recorded for posting on cancergrace.org. The GRACE home page would carry an announcement of the next event (some general, some devoted to a specific topic) with instructions on how and when to submit questions. If a moderator spotted a question that seemed particularly urgent, it would always be possible to present this to the faculty immediately for a prompt response outside of normal channels.

Ned

recce101

I think what I’m arriving at is an idea similar to what Ned is articulating: we could figure out a way for people to submit questions and get back to them about when/how we’ll cover this in some fixed interval (say, at most a week, and maybe we’ll be able to do a couple of sessions per week). People can join the webinar or chat when we specify we’ll cover the topic, and we can have recordings/transcripts available later.

At the same time, I think many of us at GRACE, both people seeking information and those on the back end trying to put things together, can agree that it’s become far too challenging to navigate. We plan to distill the vast collection of posts, which end up being like big piles of articles, into summary chapters that will remove the redundant aspects of 4 posts speaking to the same topic. Within them, we can add links to podcast materials as well. And the idea would be to revise these summary documents perhaps a couple of times per year, so that the post materials of the preceding 6 months could be integrated into the summary materials. Probably some topics would be covered in a stray post, but if many of they key concepts could be cleaned up into core reference materials, we’d save ourselves the trouble of repeating these concepts because people can’t find the information easily.

The other very important thing that we really want to do better is to have a better search function, ideally one that separates materials by posts vs. forum contents. Moving forward, we’re “tagging” our posts with labels for key issues being covered, which should make it easier to search for these terms. Perhaps moving forward with the forums, we can transcribe the Q&A webinars and tag the individual questions so that people can search the forums for helpful information and maybe find what they’re looking for as an already answered question rather than ask it again.

I think that providing a summary reference library for many cancer settings, as well as a really robust search function will really address some significant shortcomings.

And tanny, I definitely want to talk with you more about your thoughts on fundraising. I am pretty sure you’ll have a wealth of helpful insights.

Thanks to all for your comments. We’re happy to keeping fielding them and honing the possibilities.

Dr West

Dr. West, I must compliment you on the fact that your approach to this situation is to involve your audience. There are lots of useful suggestions and feedback being offered, and you are smart to take advantage of that. Again, rather an uncommon occurrence in the medical world; when the doctor asks the patients for their opinion.

Linnea

Site editing

Definitely worth doing this now I’d have thought :).There are some topics which feature concurrently and also in archive material which could be highlighted as they are very relevant to new readers and also ongoingly fresh with plenty of original material.Some of this matertial has got buried and can be hard to find for the new reader.
Some that have caught my eye: On chemo: The material on the platinum doublet, on Alimta and on Tarceva are excellent background for any new patient/caregiver and are easy to update, whenever necessary with new posts/thread cross refs.
On radiation: WBR and PCI for SLCC
On dealing with symptoms of cancer: Dr Harman’s articles on pain, cough,appetite, constipation etc remain relevant and I find myself referring to them over and over again.

There are no doubt the basis for more such ‘big topics’ already on the site where value can be added.Two areas that come to mind are management and access to the medical system (HMOs, hospice, veterans treatment,etc.) and how to interpret and deal with the various types of scanning/imaging.These are both area which will be relevant to virtually all readers.

These could be highlighted so they are easy to find on the site.They might cut down questions on the forums as many answers are already in the articles/existing posts.

Sponsorship

The pharmaceutical cos will be working closely with investment banks in order to raise money through the capital markets for their ongoing business activities.Investment banks currently need to repair their public image, and providing funding for sites like these could help.Why not ask your commercial pharma contacts for advice as to who might be interested in this area on an ongoing basis? Recognising the donor company’s contribution on the site would be easy - eg they could sponsor a ‘Round table’ of discussion between oncologists and company execs and patients/caregivers on (say) dealing with side effects of a particular treatment and what’s being done to help.They are already familiar with this type of ‘advertorial’concept in the financial publishing world.

Incurable optimist

Dr. West,

I agree that the two unique aspects of GRACE are the timely reporting of new developments with expert commentary and the interactive nature of the forums. Although the forums are the one part of GRACE I would least want to see go, I realize that they require the most time and effort from the GRACE doctors.

I don’t have any new ideas about obtaining more funding, which has been well-covered in some of the other responses. But I’m wondering if the structure of the forums could be improved in such a way that the time required to maintain them is reduced.

First, a very robust FAQ section could be set up, with answers to the most common substantive questions from new members. The link to it would be prominently displayed on the GRACE home page as a place for new visitors to start. Topics could include discussions about the process of diagnosing lung cancer, staging, common treatment options (including coverage of why certain options such as surgery or radiation are not usually appropriate in particular cases), benefits vs. risks of chemo and other therapies, second line options, prognosis, etc. All of these questions are frequently asked by new members and freshly answered by the GRACE staff each time. I think it would be best to write these as articles, not as links to previous discussions, because each of the prior posts may be slightly different. Each of the topics could be hyperlinked to other FAQ topics (e.g. a discussion of second line options could include links to the FAQs on Tarceva, Alimta and Taxotere), as well as a link at the end of each topic which would perform a search of prior forum discussions on that topic for those who want to go deeper into a particular subject.

This could relieve some of the burden of answering many of the same questions multiple times, plus it could more or less automate the research process for new users who may find answers to questions they might otherwise have posed anew. It might also make it easier for veteran members to reply to new forum questions by directing new users to specific FAQs. And it could immortalize memorable postings such as Dr. Weiss’ oatmeal story.

Second, it might be helpful to provide a fillable form for new questions. The form would ask for background information such as diagnosis, staging, prior treatment and any other information that could make the process of answering forum questions less time-consuming, reducing the need for GRACE doctors to ask those questions then respond to the member’s reply. It would provide guidance for new users so they know what information they should provide in order to get the most helpful and accurate answers.

I realize that both of these suggestions involve significant initial setup work. In that regard, it might be possible to distribute some of that work, such as choosing FAQ topics and culling previous forum responses for use in FAQs, to existing GRACE members who would prepare a draft which could then be submitted for review by the GRACE staff. I think a number of GRACE members would be willing to step up and help in this way.

Jim

JimC

Dr. West,

I think asking people for a fee (a membership?) to participate in the forums might work. You could give people the option to opt out of the membership fee if they can’t afford it. I think most people would be willing to become a member to take advantage of the interactive forums. People are so grateful for the interactive advice that you give that they will use the opt out option judiciously.

Robert Rebitzer

http://www.telegraph.co.uk/finance/newsbysector/banksandfinance/7005851/Goldmans-to-tell-staff-give-to-charity.html

I see Goldman Sachs is about to tell its banking staff to contribute a portion of their massive bonuses to charity, so this is already underway.A little bit of this huge pool of bonus money would go a very long way on the site, and may be more attractive professionally to the bankers, in that it could be made more client-focussed than simply throwing money at some fairly amorphous foundation.

Incurable optimist

Follow-up to the above, looking at the GS site, I see they have an Asian professionals network within the bank.

http://www2.goldmansachs.com/our-firm/about-us/diversity-and-inclusion/affinity-networks.html

These people might be interested either as a group or as individuals in providing funding for ongoing work on the ‘Asian never smokers EFGR inhibitors’ area.

In some ways funding the dissemination of information as on Grace , rather than pure technical research, may be more attractive to the bankers as they will at least understand what’s going on!

You could also consider holding annnual functions, where a group or sponsor buys a table and then sells tickets or invites individuals (usually clients he wants to thank)to attend.Once set up, this is considerably easier than trying to flog off individual seats at events.

Incurable optimist

All of us participating in the forums have developed a lot of impressions about this disease and about the state of current medical practice for this disease. These impressions are unique. They reveal a lot that is not apparent to the lone patient with no points of comparison. And they reveal things that are not otherwise apparent to doctors from their clinical experience because the doctor-patient communication in the forums is totally different and unique. The forums reveal what patients are truly thinking; truly afraid of; and truly not getting from the first-hand clinical communication that has left gaps in understanding, mis-understandings and doubts and fears.

Thus the forums have value beyond the very gratifying opportunity to ask a question and get an authoritative answer almost instantly. There is also a behind the scenes story that should have value in improving medical practice. It is very empirical market research — what the customers are really hearing and thinking. Too bad there is not a way to bottle it and sell it. Maybe an educational or industry foundation of some sort could be rallied to the cause from that slant?

Failing that, some structure could be imposed to improve the efficiency of packaging the content in various ways as suggested. In addition to the AMAZING level of gratification that GRACE now provides, however, much of the empirical insight into the state of the practice will be lost.

road runner

I agree with Jim C. Having a form to make sure that the right info is initially provided may be very helpful. Often in the posts I see that the doctors have to ask for more detail. If not a form (which may be harder to create / manage), then maybe a guide to tell the person what to include in their initial post. Also, reducing the number of forums may be helpful. Sometimes I have found it confusing to figure out what area to post in. And, I too would be willing to pay a small membership fee for the opportunity to post in the forums. I have found your website to be extremely valuable, and I love the quick response. Often I have asked questions on a weekend, or evening, when my husband’s doctor would not readily be available, and your responses have helped to reduce my anxiety about various situations. I would also be open to limited Marketing on the website. Kim

KimS

Of course, I’ve continued to think about all of these issues and appreciate the great ongoing feedback. I’m coming to the conclusion that the interactive component will be different but can still serve a great value more efficiently, and at the same time I think we can improve the navigability and issues of what to post and where.

Over the next few hours I’ll actually write a post on this with my ideas for moving forward, so check back later today. I’ve got great hopes that this will be helpful and sustainable.

Dr West

[...] GRACE Website without the Forums? [...]

I have always been amazed (and grateful!) that this site has been able to operate without subscription fees or advertising. I like how the plans for FAQs and improved searchability are evolving, which should help prevent repeated posts of similar questions and ease the experts’ workloads. However, on the funding side of things, I have been wondering whether it would be helpful to have GRACE / lung cancer “stuff” to sell, which might have the added benefit of raising lung cancer and GRACE awareness. I have no marketing experience whatsoever and generally subscribe to a minimalist lifestyle, but it seems to me that a lot of other groups sell t-shirts or hats or host bike/foot racing packets or sell cookies to raise funds and awareness. I think that though many GRACE readers really want to contribute financially, a lot of us are rather strapped. Perhaps putting us to work by having ready-made fund-raising packets/ideas to use in our own communities, or by having us serve as visual advertisers of GRACE and the lung cancer situation with car magnets and t-shirts, we could contribute more. This might be too much trouble for an overburdened oncologist to deal with, but I think GRACE has such a huge audience, with such geographic spread, that together we might be able to do a lot to spread the word and raise funds.

Anna

Dragonfruit