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I like blogs like yours. I like reading you and knowing you’re here in the trenches with the rest of us, not being paid to hock some product. And eSara is creepy.
I wonder if eSara is a man? Did they even hire a woman? Is she blonde? Come on.
Someone say “Well we know these FB pages are not real…” – I said, “Hey, mine is“
I know I won’t be filling out all that information just to watch one of their videos.
I assume a lot of the info will be fake. Maybe what they deserve. ?
I think this is the worst thing I have read about in a long time.
To me it sucks. Drug companies want to get their act together and listen to us the REAL patient for a change… Love your pages Kelly because we are all in it together so to speak and it’s great to be able to interact together to support each other. Not be another statistic on the balance sheet with some phoney block writing in the back ground….
Thank you so much for continuing to be such an advocate for people who live with chronic illness and rheumatoid arthritis. I personally have enjoyed reading your blog and your posts so much. you tend to write about a lot of the topics I would like to write about if only I had more time. Somehow, you always seem to sound so eloquent! Keep up the great work and thank you for pointing these kinds of things out to us. I just tweeted it and put it on Facebook to about 5000 people.
I don’t uderstand why they would need to have a fake patient when there are so many REAL patients out there who could give them REAL information. Unless they do not want REAL information, and if that is the case then they aren’t very reputable!!
I think we all know or at least think that the people in the RA drug commercials are fake patients because I know I have never met anyone with RA who feels like doing any of the stuff in the commercials nor do I. I wish I could! They need to get REAL, this is our lives our health and our emotions they are playing with!
Cindy, good points – real patients, real information. I would like to see real patients in commercials with real stories and real pain. I hate the commercials as much as you do. Did you see this yet? Click here
fPatient sites and marketing-sites-disguised-as-information-sites are exploitative and just plain creepy.
What I find here at RA Warrior is everything those sites wish they could imitate (they can’t): Honesty, solid facts, transparency, genuine caring and empathy, realistic, practical, hope, and humor.
The fPatient sites and marketing sites are not REAL. They are manufactured and sculpted to lead a reader to follow their profit-based agenda and that is just plain wrong. Why do they try to appear as something false? If they had full disclosure at the top of their opening pages (instead of buried in some hard-to-reach “about us” disclosure page), that would ruin their illusion.
Caysea, Real is always better than Fake. I like the use of real patients if they want to try to show a patient viewpoint. There are some problems for them with real patients such as liability and credibility issues. What I would like to see is more transparency from them. I know it is complicated, but the amount of information they insist upon before letting people view the site is ridiculous. The RA one took some sleuthing to figure out last year. Their new pages have the drug company name at the bottom of the front page which is better. But still it does not say why they exist to collect all this information from patients & what they are doing with it. We can only guess.
Hi Kelly
I want to respond (esp since you were sent these on Twitter, rt’ed from a tweet based on a comment I left at whydotpharma. However I’m still hooked to iv at hospital and my iPhone is not easy to for typing lengthy comments. Thought I’d be home now but not likely until after 9pm.
You know I respect your opinion. And I’m involved with the latter project mentioned. I’m dif not a fake blogger, blogger, patient,advocate, or writer. Look for more later. Btw the howifightms bloggers started our own facebook where folks can communicate with us ORany readers simply go directly to our blogs to interact. Also I always tell it like it is no matter where I write and I’ve never been censored on the sponsered site.
Hi Lisa, I look forward to hearing more from you. Just to let you know, my post had nothing to do with the whydotpharma comment which I did not see until after this blog was published today. I did reply on Phil’s blog (linked in the post) on the first or second day – April 26th – which was a couple of weeks before I was asked about this in a Tweet this week. I’ve been involved & following some discussions of the fPatient issue since then. I’ve been commenting privately & publically on the NewWayRA thing from the beginning. Like I said in the post, I’m still at the questioning stage. When you get to a more comfortable position, I hope you will read my second comment on Phil’s blog. I suggested to him a scenerio similar to the one at the MS site, which I had not yet seen. There are still some sticking points, but real people like you are hands down what is preferred by patients over the Fake Sara!
Hi Kelly,
I’m finally home. Oh boy, my comment above reads very disjointedly. Sorry for that. Lots of people have written about the eSara/MedSeek stupidity. I think I was practicing enroute to Europe when Phil/Eileen first posted. Silja asked me to comment on her post as we have a good working relationship and share ideas frequently.
I criticized MedSeek’s effort, but did mention NewWayRA and HowIFightMS within my comment. That’s where @andrewspong saw it and tweeted those urls with a ‘patient engagement’ mention. He was RT’d a number of times and then @SharingStrength asked for your opinion. Ok now.
Last year I ignored NewWayRA because it looked to be just about as phoney as the superslick, sucky inspiration, junk which several MS ‘support’ sites have. Can you tell I have not believed these ‘shows’ to be real? Well, maybe I should rethink that position.
It was only when I saw Sara Nash (who is becoming quite the celebrity apparently) was involved that I took a second look. This time around Centocor/J&J make it very clear that certain persons including Sara were compensated for travel and preparation time. That’s fair.
It’s unfortunate that they don’t clearly say that Centocor makes Remicade and Simponi (which was only approved just last April, the same month the url NewWayRA was registered by J&J). The reason is that this is a ‘unbranded’ or ‘nonbranded’ website designed to provide some sort of service to patients…..and to collect contact information for future marketing of newly-approved drugs (ie Simponi). This is ‘hidden’ in the agreement information with something like – you give Centocor permission to contact you regarding RA treatments and other stuff.”
Only because Sara was involved will I give this website a 2nd look. It was good that I read about the compensation on the website before I ever read Sara mention it. However, there wasn’t much time between the two occurrences.
Regarding HowIFightMS, when I was first contacted about a project “to inspire the MS community”, I ignored it as spammy email drivel. The PR rep didn’t give up too easily. I was quick to ask if “a pharma company who happens to have a new oral MS drug coming out in the next year” was the sponsor. I just didn’t know if it was EMD Serono or Novartis until later.
Even before getting an actual contract I had spent several hours speaking with folks from the PR company. One conversation where I was asked about many different MS-related topics by their medical personal lasted hours itself. The initial posts during several months came from topics discussed during that phone interview. Then we’ve gone beyond those topics and I’ve come up with things which the medical guy (not being an actual MS patient) had not thought to ask about. An example, the connection between menstrual cycles and MS symptoms. That video has yet to air.
Oh, and yes, we are compensated for vlogs/blogs/playlists. I’d have to dig my contract out to see if the amount is classified. (I talked about this on my blog). It seems comparable to other freelance writing I do online. We each wrote our own “about me” pages and submitted at least 5 photos to include. The only thing they didn’t include was a photo I have of Sicko crew members at my house after an interview they filmed. I didn’t want to go through the trouble of getting necessary permissions. I submitted something else instead.
The coffee stains are cute. A nice template really, but not much different then some of the cool blog skins and templates which folks often use in the blogosphere. I was surprised that they used the goofy vlog of me talking about my cat, Musette, as the first video of mine you see (free of the login). But I am proud that over time, I’ve gotten better at finding better angles and times of day to tape. And the only editing they have done of any of my pieces is to add a disclaimer to consult your physician if you want to start doing yoga or any other exercise endeavour – it made me laugh.
HowIFightMS is an unbranded site, and yes EMD Serono has submitted cladribine for approval with the FDA. Beyond them getting email addresses for MS patients, I truly hope that the website provides a useful services to other patients. I, too, am tired of people who don’t have a clue talking about our disease (or about our activities online) instead of having the patients speak for themselves.
In fact, many patients have contacted me directly after they found my blogs from my “about” page on the website. Too bad they didn’t make the links live, but I think that would have required a “leaving this site” disclaimer.
Jen, one of the bloggers, started a Facebook page for us and readers to interact. It’s not too busy because we talk so much elsewhere….and it’s not advertised at all. The same blogger has been talking with the PR company (to talk with EMD Serono) about putting many of our posts together into a book which could be freely given patients and whose proceeds would go to supporting NMSS. Don’t know if this will go anywhere.
Ironically, the only time I’ve been ‘censored’ was just this past week when I presented a series of questions to a community on a website I wrote for. The portion which was edited addressed the topic of whether it matters who the sponsor of a website/project/initiative/forum/etc is.
There is so much to be discussed surrounding the different examples you have presented here. I could go on and on…
Thanks for all the info, Lisa. I appreciate hearing your opinions on these things. We are certainly in new territory w/ new media & new relationships w/ pharma, etc. I hope the new treatment helps you.
I have never heard of the eSara campaign, but I have to admit that I am a. not surprised, but b. completely freaked out by it, especially since she shares my name and spelling of my name. That’s creepy and misleading.
I think that you and Lisa are bringing up lots of good points, and even though I am now a blogger who has partnered with a pharma company, I am also still working out a lot of my own thoughts to what it all means to be involved with a pharma company. I’m glad that people are talking about it, too, because there isn’t really a manual out there for those of us who are blogging and are interested in becoming more involved as an advocate/spokesperson- I am figuring it out as I go along, as are most of us.
One of my hesitations in doing New Way RA initially was that I wasn’t sure what the reaction would be in the blogging community- would it affect my credibility, would I be seen as ‘selling out’, etc. I suppose the verdict is still out on that one, but nothing ventured, nothing gained.
I also knew that being on the program would take up a considerable amount of my time and energy, two things I value highly, and that as a ‘real’ blogger, I was bringing a certain amount of cache (or perceived cache) to their program. I felt I should be compensated for my time and my experience, even though I knew that could potentially alter my status as a patient blogger further.
One reason I felt ok about doing the program, and ultimately decided to give this it a go, was that I don’t take any of the drugs Centicor makes. If Amgen & Wyeth had approached me about getting involved, I’m not sure that I would have said yes, even if everything else had been exactly the same. For me, knowing that I don’t personally use any of the drugs Centicor makes (or profits on) felt like a way to preserve a personal boundary. And, to reiterate, I was never asked to write anything about New Way RA, have not received any payment for anything I have chosen to write about New Way RA, nor did they have any editorial say in what I wrote (nor do they now), so my words and opinions remain exactly that.
Ultimately, I’m interested in helping get more information out there about RA and putting a non-stereotypical face on RA, and I felt like the potential for good outweighed the murky, complicated issues in this instance.
I will say I didn’t realize (and perhaps should have done better homework) that in order to see the videos for New Way RA, one would have to give as much information as you do and consent to receive emails from Centicor….though there are ways around that, which I posted in the comment thread on my blog about it. I do believe that the team I worked with on New Way RA does sincerely want to create a platform for people to learn more about RA and become better advocates for their own health. I feel good about my involvement with the program, but am definitely interested to see how these issues continue to develop, what questions arise both personally and in the greater blogosphere, etc., even though I realize there could potentially be a backlash of sorts again me or my blog.
Thanks for raising the issues in such an organized and thoughtful post. I hope more people will discuss so that these complex issues and relationships can begin to be sorted out.
Hi Sara, Thank you for posting. It’s good to hear from you. As I think I told you last year, I agree that you ought to be paid for your work. Yes, trailblazing means we figure it out as we go.
Hopefully, the fake Sara / real Sara contrast did make you laugh. There is a world of difference, of course. :heart:
I think this is terrible.And I feel really stupid – i just signed up to newwayRA and added their info to my blog. It will be deleted as soon as I finish this. I so hate the RA Medication commercials on the TV. If I could do one tenth of what they can I’d be happy. After having it for 26 years with no successful treatment I have been told by my doctor there is no point to try any new meds as all joints are totally damaged and am reduced to pain management only. I agree, there are plenty of us out here they don’t need to invent RA patients. Thank you Kelly for the info.
Hi Cindy, Don’t feel stupid. If you like the videos, I think it’s fine to put them on your site. But it is a free ad for them, so even though they would like me to do that, I’m not posting them on my site. It’s just my editorial choice – I think they should have to pay for ad space. They are much better off than I am – I work as a volunteer…
I imagine a world where all the fake patients of the world can “friend ” all the other fake patients in the world:)
Oh that’s funny. :-))
Control
It is to me at least, all about control of site content. Fpatients are packaged, every thing about them conceived by committee, and even if there is a seed of a “real” person, well it just doesn’t matter. Let that “real” person even try and write something not agreed or approved by the committee or Corporation, they would be squashed. There are not being paid to think. They are there to present the party line, and keep in step with the Corporation.
The Corporations would like to treat patients like sheep. The best way to do that is to control content of website, and do it stealthly reminds me of a political process used to control people — Propaganda.
I hear you. Hopefully, not all of them. They certainly need to better represent themselves, though.
That is just creepy, I just looked at the ESara on Facebook, why don’t they just put the real person or person’s doing that. And the poor 77 fans she has who follow that whole fake thing.. Thank you for taking the time to find out about these things and also all the helpful information that your site actually gives. Cathy
Hopefully, they realize what is going on.
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ESara kinda reminds me of the movie “The Stepford Wives”.
I love that movie – the old version. I don’t know whether it’s a political statement or whatever, but I love the point that making us all into a mold is a horror. 😛
I think that the fake eSara is deplorable. Any company who fails to disclose the WHOLE TRUTH about who they are by:
1. Lying about who they are (i.e., presenting themselves as
a “real” person who does not really exist);
2. Lying about the purpose or intent of the blog/website;
3. Being untruthful by “omission” (failure to mention or
disclose either their identity or the purpose/intent of
the website/blog or what they do with the information
you give them)
4. Doesn’t allow one to reply or comment or ask questions
is a dishonest company, and in my opinion, they forfeit their right to be trusted in ANY way, shape or form. As in any “crime,” you are a suspect of criminal activity or intent if you lie or fail to disclose information. In the same way, I would “suspect” a lying or dishonest company of either straight-out criminal acts or intent, or “immoral” or “unethical” practices. In my eyes, when people feel they have to resort to lying or being dishonest in other ways, it’s because they are “hiding” something or otherwise up to no-good.
If a company wants to host a blog or interactive website, they ought to be 100% honest and forthcoming with who they are (not “priming” by using fake people), what the intent and/or purpose of the blog/website is, and what they will do with any information provided by guests. Further, they MUST allow guests to CHOOSE what they want to answer and what they don’t (without being penalized or denied access), and MUST allow guests to leave comments and/or ask questions. Anything less is criminal (or at least should be).
P.S. – Kelly – Thank you for your website. I don’t think this site is dishonest or fraudulent in any way – and you allow people to comment and ask questions. Thank you for the time you spend on here. My RA diagnosis is fairly new – so I’m only in the beginning stages, I would imagine. But I have been trying to arm myself with information – and almost all of it has been from this site! Lately, I’ve just been praying a lot, that God would just heal me and I won’t have to go through anymore pain or suffering! And yes, I send up a prayer for all the people I read about on here, as well as you, Kelly. Again, thank you for your time and desire to share what you learn and what you go through. Your honesty and unselfishness is greatly appreciated. We need more people like you on the web ….