Dr. West, my sincere thanks for all you and the faculty staff have done to-date. Time and again the feedback and advice has been invaluable.

The quandary you are in was inevitable. Your time and that of faculty staff is a scarce commodity. The success of the site and the constant addition of new members brought an exponential increase in questions and now you at the point where there is a mismatch between ‘supply’ and ‘demand’ and with limited supply already stretched too much something has to give.

One of the big problems I see, and I must admit I was guilty of it too, was that your responsiveness to each and every question invited additional questions, often questions to which we had no right to expect answers, but you answered them nonetheless. In a sense many relied on you as a second or third opinion, albeit unpaid.

Another problem was the repetitiveness of certain questions. Each member is or has a loved one dealing with cancer. As they come on board they ask particular questions, many of which have been answered many times before. This takes valuable time away from you.

My suggestion is to compile a FAQ list, where the most common questions are being addressed.

Additionally, lay out the ground rules on what types of questions can be considered by you or the faculty. Any answering by you and the faculty to be at your discretion. It is unrealistic for members to expect they can ask anything and still expect an answer.

Anything not covered by the afore to be searchable on basis of type of cancer, treatments, diagnostics, and so on.

Once again, thanks for your great contribution to a better understanding of cancer.

When I was just diagnosed with a lung nodule several months ago, I found this website. There is absolutely nothing like it on the web. One of the most unique and helpful things about the site is the input from medical oncologists. There were two times when I needed to make crucial decisions about my care and input from Dr. West and Dr. Penner enabled me to make these decisions. I feel so lucky and grateful that that help was there when I really needed it. I would really hate to see this aspect of the site disappear.

Would it be helpful to limit the number of question each person can ask in a given time period. Would financial support help? Not certain how that would work….membership fees?

I definitely want to reiterate what everyone else has said about the value of this site, and particularly the answers the doctors provide to individual questions. One of the posters said that not every patient has access to top cancer centers for care, which is true. But even top centers don’t always agree with each other about treatment so it’s really helpful to know what the doctors on this site think about different topics and treatments, and what’s being done in different locations around the country.

With regards to continuing the forums but somehow containing the amount of time they take, maybe consider answering questions just twice a week instead of what now seems to be 24 hours each day, seven days a week. Explain on the website that this is how questions will be handled so posters don’t expect immediate doctor responses to their questions.

As someone else suggested questions could be submitted through an online form rather than posted directly to a forum. Doctors could team up and/or rotate who is “on call” and answer the submitted questions on the designated answer days, maybe Tuesday and Friday. Questions and answers could then be put in the right topic on the Discussion Forum so everyone could see it. If there is an administrative person who could do this it would free more of the doctor’s time. Discussion about the topic could continue on the forum but without the doctor’s input. If there is another question either related to the topic or spurred by the topic for a doctor a new form would need to be submitted and the process would start again.

Grace’s discussion forum has been the most resourceful, invaluable, and informative place for me when I learned that my mom was diagnosed with lung cancer. There is nothing like Grace on the web. Other sites are so inaccurate and extremely inadequate when it comes to specific or novel information pertaining to lung cancer. Grace’s discussion forum has been my life saver in helping me be well informed when making crucial decisions related to my mom’s treatments and symptoms from lung cancer. I don’t know what I would’ve done if Grace’s discussion forum did not exist. I really hope Grace’s discussion forum will continue to exist so that many many people can be enriched with as much information as possible. Dr. West and Dr. Weiss, we appreciate and owe you soooooo much for all your time and dedication to the site. Would it be possible for you and the staff to rotate and respond to questions for a limited time (30 mins) for two times a day -maybe once in the afternoon and once in the evening? Dr. West, thank you so much for everything you do for all of us here.

Dr. West,

I would like to add some additional thought to my previous response on this. A while back you addressed the same issue on the old site and after a lot of similar responses about the value of the interactive connection with the doctors, the moderator’s were born. An absolutely great idea and those who offered their help have been able to make huge contributions by answering many of the questions that are posed in the forums. However, success can be a b****. This idea that you started years ago has beome a huge success in the cancer community, at least from my eyes anyway. After you added the moderator’s the site only coninued to grow and you and the other doctors pretty much had to get in deeper and deeper and you wound up not getting any relief at all. Again, this shows what a success your idea has been but it is coming at a cost. I don’t have any magic bullets (wish I did) but whatever you decide to do, I hope that you can get the relief that you need from spending so much time on the site. The forums with you and the other doctors are what make this site unique, but perhaps because of the success of what is happening here you need the advice of a business planner or some such thing. Maybe this site could be merged in with your idea about having online consults (one big business venture). This could turn into an even bigger deal than it already is. What I am hoping you will do is make your decision based on your priorities and how you would like to work with the site. –mikem

• This reply was modified 1 year, 1 month ago by  mikem.

It is a credit to Dr. West and his team here that they’ve been willing to devote some time to a public forum, and I fully understand how time consuming it is since most days I’ve been devoting 3 to 6 hours/day to supporting lung cancer patients online (mainly on that other online forum) and plus a lot more hours reading the latest research news and researching specific qns (a couple of hundred items per week, though mostly redundant or outside my focus). I cannot keep up this pace forever, either (and have fallen about 3 weeks behind in “keeping current,” and dealing with personal obligations (like getting my tax return done — ouch! Gotta go!).

Some thoughts for CancerGRACE.org’s forums:

- Use triage: Have a non-physician on any given shift (1) promptly suggest *very specific* past articles that might answer it (specific URL links, not “go hunt the FAQ”), and (2) calling it to the attention of an appropriate person to offer an initial response (either a specific non-doctor or doctor who knows that subject well, or whichever doctor owns the shift at the time). Other doctors could ignore it unless specifically brought to their attention by a triage coordinator or trusted volunteer or the doctor covering that shift.

- Improve the search function so past answers can be found. This could include leveraging google with a site:cancergrace.org constraint, but the lack of ability to prioritize not only by keyword but also by reply-post date and popularity (hits) is making even that great search engine impotent for this site’s needs.

- Do make FAQ type answers, but don’t expect anyone to use them or find them or have the presence of mind to deal with that on their own. Patients need an usher to tell them precisely which things to read that are relevant to their specific situation or qn, not variations of “go look it up in a dictionary” or “go google it” or “go check the list of 1,000,000 generic answers.

FWIW, I understand that getting volunteers to help divide and conquer is difficult. Patients and caregivers have their own time-consuming issues and their time is far more scarce and precious than the time of people who can expect to live for decades instead of only a short number of months or years. It may prove difficult to deal with turnover of volunteers, too. I don’t have any answer for that, but just raise it as a question for better minds to solve.

Best hopes,

Great summary of the position, and great ideas.
I absolutely agree about the importance of triage, but a site associated with cancer presents problems with turnover, as Craig suggests. When I first started using GRACE, Joe Sperrazza and JimC were a fantastic double-act, moderating with skill, humour, knowledge and patience. Both have since lost their much-loved wives. kej, who was amazingly conscientious, lost her husband last year. ts, who could be wonderfully tough with people as well as compassionate, died recently. It is a long and sad list of moderator casualties. With them goes the collective memory of the site – where posts are located, which are useful, who has discussed this recently and so on.
The other important thing about triage is that it doesn’t happen in isolation – it can’t function without back-up and support from other GRACE members. The new site bewildered everyone, but if the forums are to continue I think it will require people to focus a bit more on the way the site operates, as well as on their own particular experiences with cancer.