The place of web forums in the cancer experience

[Gaelen]

I've been going through the list of studies, presentations and abstracts from ASCO's 2012 Gastrointestinal Cancers Symposium, Cancers of the Colon and Rectum, which just ended Jan. 21.

There's a lot new on the horizon, especially in screening methods validations. But also on the list are always a few interesting looks at things from the patient's POV. One that struck me was this one: Abstract 496, Experience with colorectal cancer: Analysis of patient web forums.

The researchers picked two internet CRC support forums based on four criteria:
"Two of the most active CRC web forums were identified using 4 criteria: site active for > 5 years, > 12,000 total posts on the forum, >20 individuals currently browsing, and > 10 new posts/day. All posts posted in Jul and Dec 2010 and Feb-Mar 2011 on the two forums were abstracted for review and coding using MaxQDA software."

- - - - -
Experience with colorectal cancer: Analysis of patient web forums.

Sub-category: Translational research
Category: Cancers of the Colon and Rectum
Meeting: 2012 Gastrointestinal Cancers Symposium
Session Type and Session Title: General Poster Session C: Cancers of the Colon and Rectum
Abstract No: 496
Citation: J Clin Oncol 30, 2012 (suppl 4; abstr 496)
Author(s): Kathy Beusterien, Sarah Tsay, Yun Su, Mitra Corral, Shadi Gholizadeh, Samuel Wagner; Oxford Outcomes, Bethesda, MD; Bristol-Myers Squibb, Princeton, NJ

Abstract:
Background: Patient-reported outcomes are typically collected through structured questionnaires. Patient web forums provide a unique opportunity for patients to spontaneously post their experiences and thoughts about diseases and treatments. This study explored the impact of colorectal cancer (CRC) treatments in these forums.

Methods: This was a cross-sectional qualitative analysis of web data. Two of the most active CRC web forums were identified using 4 criteria: site active for > 5 years, > 12,000 total posts on the forum, >20 individuals currently browsing, and > 10 new posts/day. All posts posted in Jul and Dec 2010 and Feb-Mar 2011 on the two forums were abstracted for review and coding using MaxQDA software.

Results: A total of 1,654 posts, posted by 264 individuals, were identified on the two CRC web forums. Demographic and /or tumor information were identified for 83% of the posters. Of these, 83% were CRC patients and 17% were family members; 76% were females, and the mean age of the patients was 49 years. The majority had advanced cancer (44% stage IV or metastatic, 40% stage III). The most common topics were a variety of side effects (62.3% of posts), treatment response (13%), and impact on personal, social, and work lives, income and life styles, and resulting emotional distress (23.9%). The posters came to the online forums in part to have an emotional outlet. Another key motive was sharing experiences and seeking advice. Formal knowledge regarding the likelihood of response, magnitude of benefit, or side effects was absent however, leading to senses of uncertainty, anxiety, sometimes shock, and unrealistic expectations. On balance, although patients reported difficulties being on treatment, they also expressed resilience and appreciation for the availability of treatment options and the hope they provide.

Conclusions: Online CRC communities provide patients with convenient and valuable emotional support and disease and treatment information. The profound impact of CRC and treatments goes beyond efficacy, toxicity, and structured quality of life scores. Systematic information and decision tools are needed to minimize uncertainties and help patients manage expectations and emotional distress.
- - - - -

I think it's great that someone is paying attention to the needs support communities satisfy in the cancer experience. Not everyone can get to a face-to-face counselor or support group.

I also think it's important that the researchers noted that for most patients, "Formal knowledge regarding the likelihood of response, magnitude of benefit, or side effects was absent however, leading to senses of uncertainty, anxiety, sometimes shock, and unrealistic expectations" but that the patients were still able to express (within the two forums studied) "resilience and appreciation for the availability of treatment options and the hope they provide."

However, a couple things did give me pause about this study. The researchers didn't identify which two forums they followed. They're not under any obligation to do so. They don't have to account for information which they received by going to an openly searchable forum and extracting the posts. They may not have used this forum...however, Colon Club certainly fits their study criteria.

I agree that the researchers should have used the methods they did - like anthropologists observing a new culture, it would likely have colored their results if the forum participants knew their posts were being followed. So to get accurate results, it was necessary to retrieve the data without telling the participants that they were part of a study.

BUT...it does mean that some very important internet privacy/etiquette reminders can't ever be repeated too often.

For everyone who thinks that they browse and post here or on other openly-searchable internet cancer support forums in anonymity...please read closely the part where the researchers were able to determine demographics and/or tumor information for 83% of the posters. They got this information most likely from their public posts and signatures, since actual membership data isn't referenced as a source. No matter how careful you think you are, most people reveal far more on an internet forum than they think they do. Publicly posting the specifics about when you'll be where (like trips to a cancer center, meetups, your email, etc.) are never smart...but stumbling on this abstract reminded me that you never really know who's reading these posts...or why...or where that information will end up...or how it will be used.

So - glad that researchers are studying the human coping part of cancer.
A little unsettled that if they're studying the internet, they might be studying right now.

[horizon]

Very interesting post. Thanks for sharing. I make it a point to be a little vague with my details. They've probably already pinpointed me anyway.

[Lee]

I agree, interesting! I'm with horizon, they probably got me pegged also.

thanks for sharing this.

Lee

[hannahw]

One of the thing I sometimes find concerning is when people turn to other posters for advice they should probably be seeking from their doctor. That, to me, suggests the doctor isn't doing a good job of listening, answering questions, making sure that expectations are managed, etc.

I've noticed with my Dad's docs there is a spectrum of what I'd call proactive involvement in patient well being. Some docs don't wait for the patient to express concern, they ask questions that ellicit responses. Sometimes it seems like patients and family members keep quiet because they're embarassed or uncertain whether expressing their emotional concerns to their doctor is appropriate. By asking, docs remove that hurdle.

[RixInPhx]

Very interesting post. Thanks for sharing. I make it a point to be a little vague with my details. They've probably already pinpointed me anyway.

The black helicopters are circling your home even now.

[Laurettas]

Whew, I'm safe. I didn't join until at least April!

For me, the thing I appreciated the most was reading everyone's experiences and, from that, putting the statistics into perspective. From reading the stats, I would have assumed that my husband would be dead by now since his cancer is one that is said to have "a much worse prognosis than average for colon cancer". Everyone's stories gave me the hope that I needed to be willing to endure all that chemo life entails. I was pretty negative about the whole thing at first, if you want to know the truth.

As far as asking advice that should come from a doctor, I probably do that because the onc we have is a really nice guy but I don't think he is as up on things as those in the major cancer centers. So, since my husband chose this path for now, I want to know all that I can about everything to pass the info on to my husband to help him make good decisions and push for things that I believe would be in his best interests. As a caregiver, we can only go along with what the patient decides and work with things as best as we can.

[disco nap]

Interesting! It probably is this forum, and then the CSN forums, that they studied.

I'm surprised they state a mean age of 49 though. I would have thought younger.

Does this mean I can add "participated in cancer research" to my health resume?

[vancouver eve]

Very interesting post.

[Dori]

If I had known, when I first signed up for this forum, what I know now I would not have used my real first name. Especially since Dori is not a common name. Although, I have to say that privacy issues were not at the top of my priority list at that time.

Several months ago, an old friend I had not seen in 25 years (!) learned of my cancer by Googling my name and finding some of my posts. He ended up contacting me on FB, and he was relieved I was doing well. It was really not a big deal, but I found the whole episode disconcerting, mostly because a potential employer (or anyone) could find out about my cancer the same way.

Live and learn, I guess.

Dori

[Gaelen]

Interesting! It probably is this forum, and then the CSN forums, that they studied.
I'm surprised they state a mean age of 49 though. I would have thought younger.
Does this mean I can add "participated in cancer research" to my health resume?

I was kinda thinking the same two sources, Disco Nap...the forums studied would have had to be relatively open, have minimal registration requirements, run on a commonly used software platform that's easy to mine for data. The CSN forums and this one both fit that description. MyCRCconnections and FightCRC's Team Inspire forums don't (haven't been around long enough, not run on common software, don't have enough active members or posts.)

Mean age of 49 doesn't surprise me, actually...there are more active posters who are over 50 than who are under 30.

In ways you probably don't know you've likely already "participated" in cancer research. If you cruise through the 850+ studies reported at the GI Cancers Symposium JUST for CRC, you'd be surprised at how many of them were studies of "all of the patients who have been treated at our hospital since (fill in the date)" or "all patients given X drug regimen in (pick a date range.)"

If you're treated at a teaching hospital or practice, you've likely at some point in time signed something that asks you to grant permission to have your records included in a specific study and/or any and all upcoming relevant studies. And of course, once you're dx'd in the US, you're part of an enormous database record of everyone ever dx'd with cancer, and that data is used, studied, re-measured, and referenced all the time. And yeah, for the doubters out there, that ginormous database of information IS updated with new information about the status of your case every year. Some stats really aren't quite so old and out of date as people would like to believe.

[hannahw]

Several months ago, an old friend I had not seen in 25 years (!) learned of my cancer by Googling my name and finding some of my posts. He ended up contacting me on FB, and he was relieved I was doing well. It was really not a big deal, but I found the whole episode disconcerting, mostly because a potential employer (or anyone) could find out about my cancer the same way.

That is crazy. Definitely not something I would have considered at the time of signing up. But I'll sure be thinking of it now. It's funny what we think about in terms of privacy because there are a lot of things that I'm very careful about regarding privacy and the internet, but it would not have occured to me that screen name could come up in a google search, let alone attahche to personal info like cancer status. It sounds like this turned out ok for you, but you could see how it could easily be very bad, especially with the way some employers now use internet searching to check up on job candidates (and employees - no pics of you passed out drunk when you were "working from home.")

I would be interested to know if there was a way for doctors to leverage web forums like this one to their advantage. Most of my Dad's docs are not fans of what Mr. Google brings into their clinic, but many of them have decided to get ahead of it by offering patient specific sites that they know provide accurate information. Many of my Dad's docs have also put at least some of their communication online so it is easier for patients to get quick answers to simply questions. No longer do you have to wait for an appointment or a call back, you can just submit your question via a secure portal and then someone, either PA, nurse, or doc can get back to you quickly.

Anyway, since so many patients and families don't seem to get all the support they desire from their face-to-face options, it might be helpful if docs could offer resources to new patients, like web forum suggestions. It seems like many people find Colon Club by accident. Some people here give their docs the Colon Club calendar, so it's not hard for Colon Club to be known to docs. As much as docs may not love some of the things the internet has to offer, it's not like patient/caregiver use of the internet is going away so smart partnering might benefit everyone.

There's another big forum, I think it's called "Patients Like Me," that offers a way for people to connect on a variety of diseases. I don't think they have a sub-forum for Colon Cancer, but I remember reading that due to some data that was collected via the fibromyalgia forum, a drug trial was actually started. I don't remember all the details but several docs were doing off-lable prescriptions and the trend was caught by one of the users of the forum. It appeared that many docs were independently doing the same off-label prescription with good results. If not for the forum, it might have taken much longer for the connection to be made and a trial to be started.

[Gaelen]

Several months ago, an old friend I had not seen in 25 years (!) learned of my cancer by Googling my name and finding some of my posts. He ended up contacting me on FB, and he was relieved I was doing well. It was really not a big deal, but I found the whole episode disconcerting, mostly because a potential employer (or anyone) could find out about my cancer the same way.

That is crazy. Definitely not something I would have considered at the time of signing up. But I'll sure be thinking of it now. It's funny what we think about in terms of privacy because there are a lot of things that I'm very careful about regarding privacy and the internet, but it would not have occured to me that screen name could come up in a google search, let alone attahche to personal info like cancer status.

I didn't want to focus on the "what if's" of the situation, but what Dori describes has happened to a couple of friends of mine, and it IS unsettling to realize how exposed people can leave themselves.

I purposely set up the @ sign as a forbidden character in registrations for forums and yahoo groups I admin. That way, people who aren't thinking about the future can't use their email address as their screen name. On private forums (must be a member to read), I send new registrants who sign up with a full name an email prior to approving their registration. I point out that they might want to consider registering with first name or a screen name instead. If they've been specific about their location, I suggest making it less specific. I'm one of the few people registered on a certain camping forum as Gaelen, rather than my first and last name. After I pointed out to the forum owner that a single woman who camps alone would be an idiot to register with her full real name, several of the guys backed me up. And where ever I register, my avatar usually isn't my actual photo.

20 years ago, nobody except people into obscure celtic myth had ever heard the name Gaelen. There was a mountain climber named Galen Rowell, and later a romance novelist whose pseudonym is Gaelen Foley. Now, it's apparently getting popular as a name for kids...and there's a golden retriever named Gaelen with her own YouTube channel. I discovered all of that when I started registering websites and googled my screen name for the first time. I set up a Google alert on "Gaelen," and it's a rare day that it doesn't get at least one hit - that isn't me and has nothing to do with me. My 20yo screen name has gone from unique to almost commonplace in the last four years. And it's the only "screen name" that I use.

As an aside to the employers doing web searches to check up on job applicants - one of my friends has actually changed her Facebook "handle" slightly so that her FB profile isn't the first thing that will come up in a Google search of her name. She wants her FB profile to be for friends and family and not a sourcebook for employers. There's nothing even remotely risque in her FB profile - but I agree with her...I wouldn't want to lose a job opportunity in this work climate because some prospective employer discovered that I'd "liked" an article about the wrong political candidate or cause.

So yeah - one of the newest recommendations in internet security is that you google your own name, and your screen name(s) if you use them. Set up a google alert on your name, and you might be surprised what turns up. You don't have to be paranoid, but forewarned is prepared.

[RixInPhx]

If you google your screen name here and the word cancer, you'll get nearly every post you ever replied to.

[SkiFletch]

I like how when I google my screen name the "SkiFletch 3.0 Online" thread comes up

[PGLGreg]

I'm surprised they state a mean age of 49 though. I would have thought younger.

Does this mean I can add "participated in cancer research" to my health resume?

No, because your age isn't given in your signature. And you're probably not mean, anyhow.