Health.com Replies to RA Warrior | Rheumatoid Arthritis Warrior

Health.com Replies to RA Warrior

An editor at Health.com sent this message to me and my readers as a response to my post Three Things Not to Say about Plagiarism to a Blogger. She did not claim to speak for the writer. Please see my response below.

I’m the Health.com editor who worked on this story, and I just got off the phone with Kelly Young. I asked if she could kindly post my response, which is the essence of what I tried to communicate in our conversation.
 
We have the utmost respect for you and RAwarrior.com. What’s more, we’re profoundly grateful. Last year, you agreed to talk to one of our writers and be featured in one of our “My Story” articles. (http://www.health.com/health/condition-article/0,,20388250,00.html)
 
We’ve been humbled again and again by the people who have serious, debilitating ailments, but who are still willing to talk to us and give us permission to feature their stories on our site in an effort to help other people.
 
What’s more, we don’t view blogs as competitors. We try to direct our readers to blogs whenever possible, and we’ve linked to RAwarrior.com in the past (and would do so again). http://www.health.com/health/gallery/0,,20441914_19,00.html In fact, we’re currently working on a story about great RA blogs and resources, a format that’s worked well for patients with other conditions, like inflammatory bowel disease.
 
Another format we’ve used is “what not to say” type stories, which we’ve done for conditions such as depression. When I started to research this topic for RA, I turned to message boards, including a 2009 discussion on Daily Strength titled “what not to say.” http://www.dailystrength.org/c/Rheumatoid_Arthritis/forum/7003552-not-say

I asked writer Katherine Tweed to interview patients and experts to see if some of these and other comments really rubbed them the wrong way (and why).  A user on the Daily Strength message board had cut and paste the list from your blog, but it was on page 8 out of 10 pages of comments. I didn’t see that user’s post or your blog before assigning this story. The similarity is upsetting, but unintentional. I have no interest either professionally or ethically in using someone else’s content, particularly since I’ve had my own content appear on other people’s sites without permission or attribution.
 
That being said, I just also wanted to introduce myself and make it clear that I’m open to feedback. Have any timely, original, health-related topics you want to write about? I’m open to pitches too, and happy to assign stories to any writer I trust. My email is Theresa_tamkins[at]health.com. Thanks, Theresa

antique mirror

My advice to Health.com

  1. Health.com should credit me on their webpage as the original source of my words like the poster on Daily Strength did.
  2. Health.com should address people whose comments were deleted from their site.
  3. Writers at Health.com and elsewhere should refrain from using words without labeling a source.

I had a long conversation with Theresa when she called me the other day. There were two points which I reiterated to her:

1) Sources must be documented, whether they are blogs, discussion boards or whatever.

My website earns the right to display the Honor Code symbol, in part by documentation of sources. Realistic citing of sources is something that readers should look for wherever they read. Where is the link to the abstract? How do you know that fact? What did you read to get this information? If it’s a blog, say so. Since we agree that blogs are good sources of information, cite them as the credible sources that they are.

2) Hiring patients is a better business model

There are at least a hundred RA patients who could write an article good enough for Health.com or WebMD or their look-alike sites. Health Central has pioneered the patient-written column and it’s a good step. But I encouraged Health.com to go even farther. I challenged them to give patients the jobs that they give freelancers.

Hire patients to write stories. Become a trusted destination where readers know that real patients even edit the articles for accuracy or sensitivity. So many sites are making a killing claiming to give patients a voice. Why not just do it?

I’ve laid out this challenge a number of times. If someone eventually takes me up on it, remember you heard it here first.

Recommended reading:

Kelly O'Neill

Kelly O'Neill (formerly Kelly Young) has worked about 12 years as an advocate helping patients to be better informed and have a greater voice in their healthcare. She is the author of the best-selling book Rheumatoid Arthritis Unmasked: 10 Dangers of Rheumatoid Disease. Kelly received national acknowledgement with the 2011 WebMD Health Hero award. She is the president of the Rheumatoid Patient Foundation. Through her writing and speaking, she builds a more accurate awareness of rheumatoid disease (RD) aka rheumatoid arthritis (RA) geared toward the public and medical community; creates ways to empower patients to advocate for improved diagnosis and treatment; and brings recognition and visibility to the RA patient journey. In addition to RA Warrior, she writes periodically for newsletters, magazines, and websites. There are over 60,000 connections of her highly interactive Facebook page. You can also connect with Kelly on Twitter or YouTube, or LinkedIn. She created the hashtag: #rheum. Kelly is a mother of five, longtime home-schooler, NASA enthusiast, and NFL fan. She has lived over fourteen years with unrelenting RD. See also https:/rawarrior.com/kelly-young-press/

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31 thoughts on “Health.com Replies to RA Warrior

  • March 10, 2011 at 6:55 am
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    Kelly, your response about giving you credit was exactly what that editor’s whole conversation left out! NO where did she even say she would!!! WTH is that all about!!! Oh it’s great she offered you a chance to write something for them, (I’m not being snarky by saying that btw), but she needs to CREDIT YOU for the piece in the first place!!! I think her whole tone was condescending (my opinion though).

    And yes, getting patients to write their perspective is a GREAT idea too!!

    Keep up the great work you do for all of us Warriors!!

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  • March 10, 2011 at 9:42 am
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    I love the idea to get actual patients to write articles! Lots of people dealing with medical issues are good writers, but might not have the time or energy to run a full time blog.

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    • March 10, 2011 at 10:39 am
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      Thanks, Carly. I’ve been saying it awhile and it seems like too logical of an idea to be refused forever!

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  • March 10, 2011 at 10:13 am
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    +YEs..I read and re-read, thinking I missed the credit. I feel like my frustration has gone to another level, instead of simmering down. I love what you do Kelly, on and off the pages, you are an inspiration. It is obvious they don’t really have a good idea what this RA is, and the battle we all endure. IF they did, they would credit you. Not cause more discomfort.

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    • March 10, 2011 at 10:38 am
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      You know Rachel, that was also how I felt about the Woman’s Day editor with whom I’ve “disagreed” for the last year and a half. They really have no idea that we have come to this knowledge that we have via our suffering. This makes the information “ours” in an even more intimate way. There is so little awareness of what RA is like that this does not enter their minds.

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  • March 10, 2011 at 10:50 am
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    This is away from the plagiarism..Maybe they would like a picture story. A barrage of pictures may get the point across..as words don’t don’t penetrate their mind. I myself have over one hundred photos. I’d love to see what exercises they recommend! I’ll start with getting out of bed to go to the bathroom.

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  • March 10, 2011 at 11:02 am
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    i read through the “response” twice, and so far it’s looking like BS to me. like a dance of a bunch of words thrown together that don’t really say anything.

    if i’m the poster the editor is referring to (i posted the ’15 things’ article, then later in the thread acknowledged the ’20 things’ blog entry), i have no idea what she’s trying to say. is she saying the reference to your article was so far down the chain of posts as to not be accessible to health.com? ridiculous. the similarity is coincidence, she says? right…

    health.com did themselves no favors in their response to you kelly, as far as i can see. i have even more disrespect for the way they’ve handled this. and removing posts from their board without explanation? shameful – makes it look like they’re hiding from rightful criticism.

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  • March 10, 2011 at 11:56 am
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    Well at least you got a response. As to content, what I read is “blah, blah, blah..coincidence..blah, blah.” I’m less than impressed, but unsurprised. I mean, don’t we live in a society where damage control 101 says, “deny, deny, deny”?

    I love your idea about patient-written articles.

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  • March 10, 2011 at 12:04 pm
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    Bravo Kelly!! I am so glad they at least acknowledged wrong-doing. Of course, it is refined and dusted with a nice sugar coating, but it’s more than I expected from them. The challenge you laid before them is brilliant and so common-sense. I’m definitely going to stay tuned to see what happens next.

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  • March 10, 2011 at 12:53 pm
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    “It’s similarly upsetting”, she says when her content is used.
    NO IT ISN”T .. She is not living this. When she leaves her desk and turns off her social media sources, it’s gone. Big Whoop. She can go out to dinner and carry on. While we have to eat our toast whole because we can’t even cut it half.
    Research and compose a blog, while sick..nearly impossible.
    Then
    1) to have stolen,
    2) draw their attention to it
    3) have them justify their action?
    this is someone on our side.? ICK

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  • March 10, 2011 at 1:01 pm
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    Hmmm, I can’t find the part where she apologized to you for what they did…..

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  • March 10, 2011 at 2:02 pm
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    I have to admit, when I first saw this I was all for you Kelly, but after reading the actual article and the editors response, I have lost some respect for you. The Health.com article was much more in-depth and had specific citations. I didn’t need to read your list to know what people have said to me (Many of the things in the list) as they have been said to me personally, so I am sure that many other RA patients, experts and doctors could provide a similar list. I for one am distancing myself from this group and will now tell people to take what is said here with a grain of salt. It looks like you are more concerned with getting credit than getting the message out. Very sad.

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    • March 10, 2011 at 4:08 pm
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      I’m sorry to hear this Alfredo. I think just a one column plus comments does not make the author. Kelly has had things, entire articles simply cut copied and pasted into another person’s article. health.com is the only place that has acknowledged it. So, while you may think we and Kelly are over reacting. I don’t agree. These are able bodied people, whose magazines, weblogs. and other sponsored output have left a considerable void. Making the Ill compelled to research and post their own information. Hours of work swiped in a matter of minutes, can cause an up rising. If you feel that this is the majority of the comments and the posts on here, I’m sorry rot see you go. I will continue to get much info here…long before I see it in any other place. That is solely a tribute to Kelly. And I thank her.

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    • March 10, 2011 at 6:39 pm
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      alfredo – did two people make the same comments to you in the same order? would you consider that coincidence? you may want to re-think your stance on this issue.

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    • March 18, 2011 at 2:35 pm
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      Really?? I’m not sure how you came to these conclusions, Alfredo. I read everything myself, and I came to a much different conclusion. Of course, I’m no professional writer, but I am in college – where I have to research, and give due credit all the time. Perhaps you misread something somewhere? Maybe go back and read again?? One thing I know for sure: Kelly does an AMAZING job of keeping up on everything RA, including a bunch of scientific jargon that I can’t stomach. She has done an amazing, and I’m sure tiring, job of putting out this blog. I have read over and over and over and over again where folks credit her with creating not just a blog, but a support community. So many have said the virtually same thing I have: Kelly, after finding your site, I no longer feel alone… I know I can count on you to provide quality info, from an RA patient who knows, without trying to sell me anything, or further some other agenda.

      Alfredo, perhaps you are the one that should lose some respect?

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  • March 10, 2011 at 7:16 pm
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    Two points:
    1) This blog is moderated in the sense that I or one of my kids read every commnent to check for spam or profanity. There are hundreds of spam comments and they are dumped. However, every genuine comment is posted.

    2) I appreciate the overwhelming support that I’ve received on this issue via the first post, emails, Facebook, Twitter, and those of who commented at Health.com. I don’t want to argue with Alfredo or be distracted from the issue of empowering patients.

    Alfredo, I’m sorry you felt the need to be so cutting. What I’ve done and said stands for itself & there’s nothing I’m ashamed of. Posting about plagiarism is something I put off for almost 2 yrs as I wrote before & it’s a rampant problem w/patient blogs. I did consult w/ others including professionals outside of our community. Posting again today on this issue was not my choice, but I believed I owed it to readers and I was giving Health.com a chance to have their say here – more than they gave those whose comments were deleted.

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  • March 11, 2011 at 3:28 am
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    Der Kelly, we live in a free country where everyone gets to have there say, and like it or not ( and not in this case ) I am so proud of your stance that you have held, and you are such a lady for keeping your cool, when dealing with, not only Health.com, but also comments that to most are so harsh. I know that you would have been down heartened by Alfredo’s comments, but know that there are 7800 people that are so grateful for your hard work, with very little thanks on anyone’s part, but know that out of those 7800 people, 7800 stand beside you, and are so very grateful for all your hard work you do for US.
    Please continue to find the strength to continue on you blog, I for one need you and your blog, the people on there, and the support that is given freely from the heart….
    Your friend with RA ….. Marg.x

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  • March 11, 2011 at 7:25 am
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    Kelly, just wanted to add my two cents worth on the response from Theresa….
    At first, I thought she started off fairly well, and the tone was soothing, but one big comment was missing. A better start would have been to first issue an apology for the error in editing that occurred. That apology and a statement that she and her writers would be more careful in the future would have shown more sincerity in addressing the plagiarism. Most editors in a similar situation would have issued the apology first and then continued to say that they would welcome feedback etc.
    Also, I echo your sentiments that patients would be the best source for articles on these hard-to-understand diseases such as RA, but I also feel that Health.com should research and use reputable sources –such as your blog!– where so much feedback comes in daily from so many people who provide “real” situations. One person who writes may talk about his/her own situation, but you would be an outstanding source to talk about/write about input you receive daily from so many of us. As a reader of everything on RA, I would appreciate the wider view–and personal view as well–that you would give to the RA experience.
    Thank you, as always, for being such a special advocate for those of us who can’t do what you do!

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  • March 11, 2011 at 10:23 am
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    Kelly – you are awesome! Thank you for standing up not only for yourself but for all of us who have RA and for all of us who blog. By standing up like you do, you also hold up a standard not only for the professional websites but for the rest of us. We all need to be sure we are not using others’ works. And from blogging, myself, I know just how easy it is to read a blog, identify with what is being said, and then to say the same kinds of things, not realizing what I’m doing. I try not to do this, but I’m pretty sure I do it – unwittingly, I assure you – occasionally.

    I’m going to go back through all my posts and be sure I have attributed things I should attribute.

    Thank you for your inspiration and the standard you set for the rest of us!

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  • March 11, 2011 at 11:21 am
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    Excellent point, Kelly! I have been asked to write short articles on things like “what to say or not say.” It goes from 450 words down to 200 and then they cut some of the most meaningful parts. To editors without illness, some of these points seem insignificant or petty. To those of us with illness, they sometimes make all the difference; for example the tone of how someone says something or the kind of relationship we have with the person can make a difference in how we react even to the same words like, “You should get out more, let’s go to a movie.” It is frustrating that editors hire their in house writers to interview us and ask us to write pieces and then cut them down to hardly a side-bar. And yes, it’s also frustrating to see our exact words in print in many places. I know we who live with illness have similar feelings about things and some things can “look” like our own, even though they are not. I try to give people the benefit of the doubt. But when they are copy and pasted, punctuation and all, it can be rather obvious. Great post! These “battles” are hard to fight when you are not feeling well.

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  • March 11, 2011 at 7:37 pm
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    Hi Kelly
    While I am sure you have had someone plagiarize your content (you do have a lot of valuable information here) I don’t think this is the case this time. I probably over reacted a bit in my post, but I still believe the article at health.com was well-cited and it did quote a lot of experts. I am glad you decided to speak up and I hope that you will continue to call others on their plagarism; it’s only fair and I think you deserve credit for your work (as anyone does.) I just wish you had done it sooner with something that was more obviously original content. Hopefully, now that you have spoken up, people will think twice about stealing any content. I also found the reaction in the comments on the health.com article, most who were supporting you, to be rather vitriolic and harsh themselves; very much the mob mentality. I don’t think that was particularly helpful. It didn’t seem to me that they were blocking out comments, but then again who knows? Hopefully cooler heads will prevail and something beneficial will come out of all of this.

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    • March 12, 2011 at 12:20 pm
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      I disagree with your (1) facts, (2) conclusions, and (3) approach. If you are interested in why, please see (1) this link where I already explained why this type of copying is not more excusable; and (2) visit this link where one of the two people interviewed by Health.com comes to opposite conclusions as you and publicly rebukes them. Finally, (3) regarding “vitriol,” it’s not a word I use so I looked it up to be sure, and it seems to describe your comments toward me and my website (saying you plan to tell others I’m untrustworthy for example). I haven’t been to see any of the comments at Health.com by those who felt that they were speaking up for justice, but I believe the several people who told me that their comments were deleted. I don’t know whether they were deleted because of vitriol or harshness, but I know that yours here was not. That speaks volumes to anyone who is listening.

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  • March 12, 2011 at 12:37 pm
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    NOTE: I need to inform readers that “Alfredo” is the same person as “Joe” who picked a fight with some people by making comments that we have “small minds” for wanting to treat kids w/ JRA with medication. There has been more than a little dishonesty involved & we might not want to spend too much time arguing with whoever this really is since his or her goal is obviously not to have an honest discussion.

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  • March 12, 2011 at 1:03 pm
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    What jerk…to re read the link you posted involving comments made before by “Joe” and “Alberto” has even more meaning after yesterday’s e-patient limmerick video. I’m sure you knew that when you posted it. You are sharp chick, Kelly. We don’t need that crap to make us realize that. I feel so duped. He/ She is messing you, and us. I will never again waste my valuable time letting “his’ abuse bother me. Thanks for filling in the void! We love you Kelly!

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  • March 12, 2011 at 1:39 pm
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    There will always be people who don’t want to understand; people who love making trouble for others; people who are and want to remain ignorant; and people who are just plain mean.

    As a person who has had RA for 15.5 years, I love and appreciate Kelly and all she does; Rheumatoid Arthritis Warrior and those who are on it because they have or love someone w/RA is a fabulous contribution to humanity.

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  • March 12, 2011 at 7:39 pm
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    Bravo Kelly! As always you are my hero! You are so gracious and kind! But you ARE our Warrior #1!
    Warm Hugs,
    Trish

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  • March 14, 2011 at 1:55 am
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    Alfredo

    I was exceptionally disappointed to read your post. It leaves me wondering exactly what was your reason for reading this blog in the first place?
    I don’t believe that Health.com did give particularly good explanations and in fact the ‘explanations’ given by them, in my humble opinion, were not the problem people with RA have with those ‘coincidental’ comments.
    I just revisited Health.com to check again that my original perspective of what was written was the same – it was.

    I then note a posted response there posted 03/09/11 that seemed similar to your post above but under the pseudonym ‘Serioulsy’ ‘sic’.

    I was pleased to see my comments were still there – none of which were of a mob mentality nor vitriolic. My posts were simply speaking up publicly in support of Kelly for whom I have the utmost respect and admiration. However I recognise for ‘some’ that it is part of the human condition that makes them feel the need to vilify others to make themselves feel better.

    I sincerely hope that you ‘Alfredo’ ‘Joe’ or ‘Serioulsy’ or whoever you really are, never have to live day to day with the excruciating pain and condition that is RA. Personally, it seems that if you really understood – none of your negative posts either here or on health.com would ever have been written.

    To Kelly and my genuine fellow warriors – I have learnt far more from you than any medical practitioner to date (and I’m an RN which really says something – oh and I was a good one too before RA)
    Gentle Hugs

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  • March 15, 2011 at 1:43 pm
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    Hi! Testing my iPod and commenting. Works great! 🙂

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  • September 8, 2015 at 2:10 pm
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    Kelly:

    As a person who is a ‘doctor’ (no, not that kind of doctor), I am profoundly moved by your item today. I agree 100% that all sources regardless of type must be correctly stated. I appreciate the fact that you took this on.

    Good work,

    Lawrence ‘rick’ Phillips Ed.D.

    Reply
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