Paper by researchers at CMU & Pitt about this site

Options
squid6
squid6 Member Posts: 4
edited October 2014 in Comments, Suggestions, Feature Requests

Some researchers at Carnegie Mellon University and University of Pittsburgh have published a paper about this site. They don't name the site, but they quote discussions here, so a search for any of the quotes turns up the site right away.  The paper is here:

http://kraut.hciresearch.org/sites/kraut.hciresear...

They had crowd workers on Amazon Mechanical Turk read posts from this site (without the poster's identifying info) and rate them for things like whether the poster was requesting information or support, whether the poster seemed satisfied with the responses, etc.  Their main conclusion is that people who have information questions are less satisfied if they get emotional support responses, but people who ask for emotional support are pleased with both informational and emotional support responses.  That's a rough summary--see the paper for details if you're curious.

I have two different questions:

1) How do you feel about the ethics of their studying this site?

2) Do you agree with the conclusions they came to?

I am both a researcher in this field and a current patient. I am not affiliated with the authors. I was sent a copy of the paper and am wondering how everyone here feels about it.

· Share on FacebookShare on Twitter

Comments

  • 208sandy
    208sandy Member Posts: 2,610
    edited October 2014

    Haven't read the paper yet but question the lack of ethics - btw what on earth good would this study do and who the heck is paying for this - seriously hope this wasn't funded by pink $$$$$.

    · Share on FacebookShare on Twitter
  • Meow13
    Meow13 Member Posts: 4,859
    edited October 2014

    I get more info here than from my doctor

    · Share on FacebookShare on Twitter
  • Moderators
    Moderators Member Posts: 25,912
    edited October 2014

    We are very interested in your feedback on this issue. We had not known about their research until it was completed, but were told some time later. Please continue to share your thoughts here. 

    Thanks!

    The Mods

    • edited to add that the funding was not from breast cancer fund raising. 

    · Share on FacebookShare on Twitter
  • squid6
    squid6 Member Posts: 4
    edited October 2014

    To answer Sandy's question, the research was funded by the National Science Foundation, with money intended for computer science research (specific grant info is in the paper). So no pink $ were used. :)

    · Share on FacebookShare on Twitter
  • 208sandy
    208sandy Member Posts: 2,610
    edited October 2014

    To the Mods - if they let you know after their research was complete did you not feel that perhaps you should have let everyone on site know?  I am very careful about what I post but I have seen personal phone numbers and full names, etc. all over the site - perhaps it's time to give the "security lecture" once again.

    · Share on FacebookShare on Twitter
  • Tomboy
    Tomboy Member Posts: 3,945
    edited October 2014

    I came to BCO through a web search when I was terrified of chemo. And the wonderful warm women here got me through it, and educated me in a way my doctors refuse. My onc's PA actually warned me to stay away from "online support groups" because of misinformation. But I find an excellent cohort of diagnosed women, and a high level of intelligence and caring. I have encouraged all health providers I come in contact with, about this site, and encourage them to check it out, for its valuable information. I am pretty sure they don't, although a few have admitted knowledge about it.

    The thing is, is that before computers, there were a couple of drunks who got together and created alcoholics anonymous, and it became a great social experiment, and the first support group ever, and many other support groups have modeled themselves after AA.  Because it worked. I am pretty sure that if it was just being formed now on computers, it would be equally as effective.

    My feelings ain't hurt! I am going to read the paper now, check back in later.  I just think that it would be very valuable to researchers, to find out how we really feel, and what we think, because eventually, just as it has done over the years (no more halstead, YAY!!) treatment will get more refined, with less collateral damage!

    And that our doctors will find out that it really is ok to answer ALL of our questions about treatment and after effects.

    · Share on FacebookShare on Twitter
  • squid6
    squid6 Member Posts: 4
    edited October 2014

    I guess I have a related question for the mods: 

    Why is content on this site available to search engines?  I'm guessing you made that decision to try to drive traffic to the site? I personally would never post on such an open site.  If you make it accessible only after log-in, then anyone wanting to use the content is subject to the terms of service, and you can kick them off if they violate those terms. With it open like this, the researchers can use it as they wish and the community has no recourse....

    · Share on FacebookShare on Twitter
  • Tomboy
    Tomboy Member Posts: 3,945
    edited October 2014

    Squid, thanks for that link, but are YOU for real? You have only 3 posts, and you don't even say what your diagnosis is.  Whats up with that? Are you being here to just stir the pot?  Do you have a face book account, since you are worried about privacy?  I don't do facebook, but I am betting YOU do. I wouldn't have found this site, if I hadn't googled some questions, and BCO kept being at the top, and for that I am grateful. So, do you have a dx, or are you just doing research yourself? Or are you a sock puppet?

    · Share on FacebookShare on Twitter
  • squid6
    squid6 Member Posts: 4
    edited October 2014

    kathec, legit questions. I am totally for real--yes I have a diagnosis of breast cancer. As I mentioned above, I am not comfortable discussing personal medical details on a non-password-protected site.  I have a password-protected CaringBridge site for my family and friends.

    I'm glad folks find support here--that's great. And there are different sites with different levels of privacy for people who have different comfort levels. It's interesting that this site does seem to be more active and have more comprehensive information than some of the password protected ones--I guess that speaks to why they made this design choice.

    I'd be curious to hear what you think of the paper. My own conclusions about both the paper and the method agree 100% with kayb's response above.

    · Share on FacebookShare on Twitter
  • ruthbru
    ruthbru Member Posts: 57,235
    edited October 2014

    Of course they want traffic 'driven' to this site! This has been the very best source of information & support for me and for many, many others who, only through good fortune, happened upon BCO ourselves in the course of our research, or were told about it by others  through word of mouth. I wish every single person diagnosed with breast cancer could be 'driven' here. And, if you don't want any of your information/thoughts etc. seen by anyone at all ever, you certainly should never post anything anywhere online, do anything that might get you in the newspaper, be on a panel, write anything down on paper, or say anything out loud either!

    · Share on FacebookShare on Twitter
  • Tomboy
    Tomboy Member Posts: 3,945
    edited October 2014

    Anybody else?

    · Share on FacebookShare on Twitter
  • Blessings2011
    Blessings2011 Member Posts: 4,276
    edited October 2014

    A few thoughts:

    1. Are the Mods responsible for letting us know each time a research study gleans information from our posts? Are they even AWARE that this is happening, and is it too much to expect of them?

    2. I know this is a public forum, and while I have shared some personal experiences, I don't think I am totally personally identifiable through my posts. I have an innate distrust of all things Internet, and figure if I wouldn't want it posted on a billboard, I wouldn't post it online.

    3. My MO is a brilliant researcher, a compassionate physician, and the Manager of a huge number of physicians at the hospital. She also is funny, has the biggest heart I know, and specializes in removing fear from cancer patients. The first thing she told me when I was dx'd was "STAY AWAY FROM THE INTERNET!!!! I MEAN IT!!! Unless you go to BreastCancer.org. That's the only site I'll let you go to. They are the only ones with legitimate, up-to-date information, a supportive membership, and no hidden agenda."

    · Share on FacebookShare on Twitter
  • coraleliz
    coraleliz Member Posts: 1,523
    edited October 2014

    Ok, I quit reading half way thru the 2nd page. As far as I'm concerned they are trying to measure something that is un-measurable. I put little weight in such studies(I'm being polite here). Not sure I can get thru 8 more pages, ugh!! You either find what you're looking for or leave this site. I seem to come & go.

    · Share on FacebookShare on Twitter
  • ruthbru
    ruthbru Member Posts: 57,235
    edited October 2014

    Hi coraleliz!!!

    · Share on FacebookShare on Twitter
  • exbrnxgrl
    exbrnxgrl Member Posts: 12,424
    edited October 2014

    When you join bco, you are aware of the public nature of this site and you should be aware of all that implies. With that in mind, you choose to post/not post and, if you do post, you decide how much personal info to reveal. 

    · Share on FacebookShare on Twitter
  • coraleliz
    coraleliz Member Posts: 1,523
    edited October 2014

    Hi Ruth

    From previous reading I've done, you're more likely to disclose information on the internet if you are younger. People in their 20 & 30s are more likely disclose info than some of us who are a little older. People 70+ are the least likely. I don't like to disclose much because I live in a smallish community & wouldn't be that hard to find

    · Share on FacebookShare on Twitter
  • LilacBlue
    LilacBlue Member Posts: 1,636
    edited October 2014

    squid6, thank you for bringing this to our attention and offering a shortened summary.  I don't have an issue with research being done on a open, public site.  Possessed full knowledge when I signed on to BCO the exposure it has and of having no control over how or where any of our posts may wind up.  The findings do seem unimportant.

    · Share on FacebookShare on Twitter
  • Tomboy
    Tomboy Member Posts: 3,945
    edited October 2014

    ....they could of just asked us! I finished reading it, and basically they were trying to find out if online "support" was supportive! Dopes! The study was done by the Human Computer Interactions Institute and Language Technologies Institute at Carnigie Mellon, and I don't think they really cared about what we said ourselves here, per se, but how the person who read the post perceived it to be.  Maybe it was for someones' thesis.

    · Share on FacebookShare on Twitter
  • riverhorse
    riverhorse Member Posts: 126
    edited October 2014

    As a very occasional poster but an avid lurker I think the researchers reached accurate conclusions regarding this ste.  Some users are interested in information, others seek relationships with others who share a common bond.  Of course the structure of the site lends itself to segmentation by diagnosis and results in various cohorts with a common bond.   It is not surprising that those seeking and receiving information are more satisfied, as information can be actionable and could lead to improved outcomes.  Emotional support among members of the site may be satisfying on some level, but it does not hold the promise of an improved outcome.  I guess I do wonder why it took some sort of study to figure this out.   I am surprised that more researchers don't look to BCO for data.  There seems to be a wealth of information in the aggregate about SEs, outliers and unexpected positive outcomes.  

    · Share on FacebookShare on Twitter
  • edwards750
    edwards750 Member Posts: 3,761
    edited October 2014

    My patient advocate recommended this website when I was first diagnosed. It was a godsend and my lifeline and still is but  for different reasons. Initially it was information only but now it has become a place where a group of us can chat about anything and everything. We all have BC but it doesn't define us. Several of the ladies have already met which I think is really cool and amazing. 

    Frankly I have never thought about the fact this is a public forum because none of us have revealed anything traceable. We all chat fairly often and I have to admit I do feel like I have known these ladies forever and I enjoy hearing about their daily lives. Just so you know I do have a life with a husband, children and even grandchildren. 

    I for one don't know how I would have gotten through those months following my DX without the help and support from the ladies on this website. One of our group died not that long ago and we all sent cards. Never met her. That speaks volumes. 

    Diane 

    · Share on FacebookShare on Twitter

Categories