Priorities and Rethinking the Discussion Forum

Portal Forums User Community Comments/Suggestions Priorities and Rethinking the Discussion Forum

This topic contains 25 replies, has 18 voices, and was last updated by  vll 2 years ago.

Viewing 20 posts - 1 through 20 (of 26 total)
Author Posts   
Author Posts
April 12, 2012 at 2:42 am  #1243017    

Dr West

For those who might happen to not see the home page or the “GRACE News” part of the site, I post on a pressing concern of the long-term feasibility of the GRACE Discussion Forums. I welcome your thoughts.

-Dr. West


Howard (Jack) West, MD
Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

April 12, 2012 at 10:01 am  #1243018    

certain spring

Dr Weiss, mikem and funnymom have already offered valuable responses in the Comments section. The only reason I’m posting here is that I find the Comments section a bit unwieldy, especially when there are a lot of replies.
Like everyone here, I am incredibly grateful to you, Dr West, for enabling the discussion forums. They are enormously valued as a source of medical, emotional and social support. But I entirely see why you might feel they have reached the point of being unsustainable. I think everyone finds it astonishing that you devote so much time to answering questions while also practising as an oncologist and having a personal life. So I completely understand why these issues are pressing, and why you might want to prioritise the core mission of GRACE.
Like funnymom, I wonder if it is worth experimenting with a compromise. It would involve, first, a much more prominent advertisement (before entering the site) that GRACE cannot:
- Give medical advice
- Interpret people’s CT/MRI/pathology reports
- Answer multiple questions
- Answer questions from people who have not filled in a relevant forum signature
This would allow faculty and members simply to refer back to these rules, whereas at present it is hard to say “no” to people who are bewildered or distraught. A compulsory forum signature would save the doctors a lot of time fiddling around and re-reading threads. I think it is very reasonable to insist that someone who is asking for medical guidance should provide a context.
My other suggestion is a limit on the number of doctors who answer a given question within a given time period – say 72 hours. This would be a shame, as it is interesting to see the faculty discuss things among themselves, and it probably makes the work of patrolling the boards more interesting for them. But unless there is active disagreement, it seems silly to have three or four distinguished oncologists posting in a thread where one would do, especially when the question is fairly straightforward.
I look forward to hearing what others have to say, and am grateful to you Dr West for throwing the field open.


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

April 12, 2012 at 11:06 am  #1243019    

Dutch46

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.

April 12, 2012 at 2:08 pm  #1243020    

Follansbee

Dr. West, I posted about this topic on the home page earlier today but would like to add that many topics that are started as specific questions to the doctors become, after the question is answered, forums for discussions among members, with medical related questions thrown in occasionally. I don’t know if you review all these posts or if they take much of our time. If they do, maybe each topic that starts as a medical question could be closed once the doctors have answered the question and nonmedical discussions that begin as part of these topics could be continued elsewhere, maybe in a “support each other” section or in a continuation of the “Updating Eachother” thread that was started several weeks ago.

Follansbee

April 12, 2012 at 2:57 pm  #1243021    

Dr West

These are all good thoughts. Maybe if we have someone maintain a folder of “open questions pending faculty response” or having volunteers or staff review and triage questions to different docs would work.

From the front page, I was also thinking about the fixed hours of chat time and a way to submit topics for posts. Both of those should be extremely feasible to implement.

I appreciate that the forums are valued and will try to see if we can work around a way to lower the time requirement, and perhaps some of the expectations, of maintaining the forums.

-Dr. West


Howard (Jack) West, MD
Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

April 12, 2012 at 3:07 pm  #1243022    

fortmyr

I’d like to chime in and say how invaluable GRACE has been to me and my sister over the past 2.5 years, and how generous Dr. West and other oncologists have been with their time. To me, both the articles written by doctors and direct answers on specific questions were important so I hope that there is a way to keep both features in the future. However, I also recognize that the amount of work for doctors may not be reasonable so I really hope that a compromise can be found. I’ll try to think of solutions and will come back to this post later.

Myriam


Sister (46 yo), non-smoker, diagnosed stage 4 NSCLC 12/2009 12/09-03/10: 5 cycles cisplatin+navelbine (stopped because of neuropathy) 04/10-06/11:Tarceva (EGFR, exon 21 mutation) 02/11: 15Xrad. to right lung (bronchi blocked) 04/11: MRI shows 10 brain mets. 05/11: 5 sessions of WBRT (20 Gy) 06/11-12/11: maintenance Alimta 11/11 and 01/12: radiosurgery (15 Gy to 2+3 brain mets) 12/11-03/12: re-Tarceva. 04/12: Afatinib (convulsions) 08/12: adding Cetuximab to Afatinib. Left us October 31, 2012.

April 12, 2012 at 6:32 pm  #1243024    

ds

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?

April 13, 2012 at 1:29 am  #1243025    

certain spring

Having thought about it overnight, I think part of the problem is the tendency to treat GRACE as a free medical advice service, and the (quite natural) impulse to go on asking questions long after the initial point has been resolved. Often GRACE ends up compensating for the deficiencies or unavailability of people’s doctors, but sometimes patients themselves seem to use it as the first port of call, without considering whether it might be more appropriate to speak to their own medical team. So, as I suggested above, I would like to see a very prominent notice on the landing page, saying something like:
- GRACE should not be used as a free medical service. We cannot provide individualised medical advice.
- Before you ask a question, please consider whether it could be answered by your own medical team.
- Please consult the FAQs to see if yours is covered.*
- Please do not post scan reports as we cannot comment on them.
- Please provide a signature giving some basic information about dx and tx.
- Please don’t ask multiple questions as the doctors’ time is limited.
This is all covered in “How to Use Grace”, but that section is quite discreetly located. I think people need to realise that we mean what we say and they’ll be challenged if they ignore these rules. That means stricter policing, which is hard as everyone on GRACE is so nice and it is hard to say no to someone who may be confused, upset or in pain.
* Re FAQs, as suggested by Dutch46, there is a very useful FAQs section, which I think not many people are aware of. It may need updating but it is most certainly there, in the drop-down menu under “General Cancer Information”.


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

April 13, 2012 at 8:40 am  #1243026    

mk619

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.


Sister-in-law diagnosed 12/08 with NSCLC Stage IV. Scan on 12/30/08 indicated hypermetabolic uptake in a 4.1 x 3.5 cm right lower lobe lung mass (SUV 11.18); FDG-avid 1.9 x 2.8 cm right lower lobe mass (SUV 9.95); 2 hypermetabolic contiguous nodules in left lower lobe (SUV 3.8); and hypermetabolic lymphadenopathy in the bilateral hila and mediastinum (pretracheal lymph node). Initial treatment was six rounds of Cisplatin/Alimta/Avastin. Good response to treatment so started maintenance Alimta/Avastin every 3 weeks in 5/09. Scan in 5/10 showed only a 1.2 x 2.1 cm right lower lobe irregular lesion with an SUV of 1.1. No other hypermetabolic areas of uptake were noted. Increased time between treatments to 4 weeks. PET/CT scan in 5/12 showed virtually no change from 5/10. Core biopsy indicated no evidence of disease. Case presented to Tumor Boards at Sloan and Johns Hopkins in June. Boards at both were split in what to do so decision was to stay with current treatment for now. October 2012 scan also shows no evidence of disease. Still getting Avastin/Alimta every 4 weeks though sometimes stretching it out longer.

April 13, 2012 at 9:15 am  #1243027    

Dr West

I appreciate all of these comments and welcome more. There is really a meaningful incremental value to having this interactive component of the site.

With many of your ideas, I’m coming up with some new thoughts on how we might be able to make it feasible to keep this going but have less redundancy.

Thank you, and I continue to welcome additional thoughts. We’ll try to work on some new plans.

-Dr. West


Howard (Jack) West, MD
Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

April 13, 2012 at 11:51 am  #1243028    

meanie11

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.

April 13, 2012 at 1:48 pm  #1243029    

Sherry

Dr. West, I would like to say that I, too, find it incredible that you and the other doctors give so much of yourselves. I can certainly understand where it has become too much. I am very guilty of asking one question and then turning the answer into 20 more. But the selfish part of me wants to scream NOOOO! Don’t stop!!

I quite literally credit you, this site, and especially the forums, for saving my life. The day that I found out that I may have lung cancer was the day that I thought I was going to die very soon. The fear was the worst I have ever felt in my life. I was falling apart. I started searching the web and found nothing but grim statistics and articles that confirmed my worst fears. Then I found GRACE. The first people to answer my posts were other posters and then you answered my posts. From all of the information that I received, I realized that whatever stage I was going to be diagnosed at was treatable and I found hope. That knowledge and comfort alone is what I credit for saving me, emotionally and physically.

The selfish part of me goes to the friendships I developed here and the comfort I have recieved from other posters that is nothing short of amazing. Neil, Simon, Ned, Laya, Certain Spring, just to name a few, have taught me so much and given me so much support. They, among so many others, have become people I truly care about.

I don’t know what the right answer is, but I hope there is some way we can keep the peer to peer part of the forums. Of course I would love if there is a way the doctors can continue on as well. As always, if there is anything I can do to help, please let me know.


ME: Diagnosed Stage 1A in July 09, ULL, no further treatment. Diagnosed with breast cancer in Feb. 11, again Stage 1. All scans were clear until headaches started in April 2012. In July 2012 was diagnosed with a metastatic brain tumor from lung, surgically removed and treated with cyberknife. Now on Tarceva. Clear scans to date. DAD: Diagnosed stage IV in Dec. 09, was on Tarceva until April 2012, then Alimta once every 3 weeks. November 27, 2012 entered the kingdom of Heaven.

April 14, 2012 at 7:05 am  #1243032    

mikem

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


55 year old former smoker diagnosed w/Stage IV NSCLC Adenocarcinoma 10/20/09 Completed 6 carbo/alimta followed by 10 Alimta maintenance. Biopsy of iliac negative for metastatic disease. Might not have been a stage IV after all. Oct. 2010, on to surgery…. removed lung. All lymph nodes clear 11-17-10. Jan 2014 Still all clear

  • This reply was modified 2 years ago by  mikem.
April 14, 2012 at 8:50 am  #1243034    

catdander forum moderator

I don’t know how but I know I’m a different person today than who I would have been without participating in Grace forums for the past almost 3 years.
Dr. West I like your idea of having a non specialist direct repetitive questions to answers that already exist. Some of that could be done with little or no input from faculty.
A triage created by non faculty could be addressed by faculty at specific times.
I’m glad you are looking for answers that can keep the mission of GRACE intact.
Thank you

April 14, 2012 at 2:16 pm  #1243040    

Dr West

Thanks to all.

In the next day or so, I’ll put out a proposal for how we might revise things to have the forums remain viable without it being too much for me and a few others to handle. Look for that post by tomorrow.

-Dr. West


Howard (Jack) West, MD
Medical Oncologist

Views expressed here represent my opinion, not those of GRACE or Swedish Cancer Institute. This information does not constitute medical advice and is intended to supplement and not replace medical information provided by your doctor.

April 14, 2012 at 11:37 pm  #1243043    

forherbie

Dr. West,
I too have wondered how you find the time to take care of patients and to answer our questions. Your up to date and truthful cancer info along with the other doctors make this site so valuable.

When my husband first began Tx—some hospital folks told me to come back to them to clarify info I found on the internet. What I did was to tell the social worker, med onc and rad onc how accurate and helpful Grace is—-I know the med onc looked at Grace because she told me she went to school (or was in training) with one of the faculty members here.

I hope you come up with a plan that frees up your time.
Anne

April 15, 2012 at 8:50 am  #1243044    

Craig

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,


- Stage IV never-smoker ROS1-driven m-BAC indolent adenocarcinoma
- Dr. Alice Shaw’s Xalkori (crizotinib)-for-ROS1 trial @ MGH, Boston (2+ yrs)

April 16, 2012 at 3:14 pm  #1243048    

njliu

While I appreciate the great value of the almost instant personal response from the faculty here, I think this is not sustainable due to the demand of heavy, and still growing, hours carved out from the busy schedules of doctors who are at the top of their games.
The educating function of this forum is currently achieved through 4 approaches: (1) FAQ, (2) Podcast, (3) Past Threads, and (4) Direct and Specific Response from Doctors. I think we have to raise the roles of the first 3 while reducing that of the fourth, The suggestion by Craig in employing triage to respond by directing members to related past postings is perhaps the key. Doctors’ direct response should be the exception rather than the norm.
Additional suggestions to make the question and answer more efficient are:(A) To limit the number of words in each posting forcing each question to be specific and concise. (B) To link the signature entry to posting form (The signature section of the posting member should appear for update each time he or she begins to post).

Best hope for GRACE


Wife, 56, Asian, 11/11 Dx Adenocarcinoma 3B, EGFR+. 12/11 starts Iressa. 12/12 asymptomatic brain mets with possible lepto, 1/13 WBR, continue Iressa, 9/13 Local Progression at primary tumor.

April 17, 2012 at 2:07 am  #1243094    

certain spring

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.


49-year-old non-smoker, dx stage IV NSCLC May 2010 (squamous tumour of the left lung with multiple brain metastases). Radiotherapy to chest and brain; progressed through two cycles carbo/gemcitabine. Repeated lung collapses; pneumonia in collapsed lung, Nov 2010; bronchial stent placed, Dec 2010. Declined second-line Taxotere. Mutation testing Feb 2011, surprise EGFR exon deletion 19. Started Tarceva (150mg), Feb 2011. Progression in liver and elsewhere, May 2013.

April 17, 2012 at 1:56 pm  #1243099    

njliu

Certain Spring, I fully agree. I fondly remember the time, before the revamp of this site, when a number of active moderators (carrying designations of senior member or global moderator, with number of cumulative posts as badge of honor prominently shown, which could have had encouraging effects) were helping to quickly comfort and refer lost souls to relevant posts. It seems the bulk of the load falls onto you now. I always wonder how could you so efficiently pick up those posts from the pile of history. If we can make this easily DIY and if everyone has browsed the related old posts before posting, we could raise the quality of new questions and lighten the load of our precious and finite resource of dedicated doctors. Other than the great insights from doctors, the sharing of experience and the emotional support from fellow patients or caregivers is equally valuable. Make this forum more of a (1) DIY resourceful reservoir of knowledge, (2) support group of fellow patients and caregivers, and (3) quality discussion moderated by leading medical experts.


Wife, 56, Asian, 11/11 Dx Adenocarcinoma 3B, EGFR+. 12/11 starts Iressa. 12/12 asymptomatic brain mets with possible lepto, 1/13 WBR, continue Iressa, 9/13 Local Progression at primary tumor.

Viewing 20 posts - 1 through 20 (of 26 total)

You must be logged in to reply to this topic.