Overwhelmed in Oz: How ‘Healthy’ Is Social Media?

Blogging and tweetchats and spam, oh my!

Warning: Before reading any further, you might want to grab a cup of coffee and put your feet up.

There’s no doubt that the explosion of health-related social media has opened up tremendous possibilities for communication by, about, and among cancer patients. It’s also underscored some tremendous ironies. For example, it’s not unusual to find yourself having a hard time getting your own doctor to return your calls or to listen to you during an office visit, while over on Twitter, you can find yourself chatting up a storm with physicians from all over the world.

Meanwhile, I’m sitting here at my kitchen table, waiting for UPS to show up. Because I wrote a blog post about buying myself a Concept2 rower, and because I emailed the link to Concept2, they not only tweeted my post, but sent me several kind emails and informed me that they are sending me a small gift, which UPS is due to deliver any minute now. I can state categorically that, beyond making a very fine rowing ergometer that I’ve liked for years, Concept2 had nothing whatsoever to do with my writing a post about it. And when I sent them my post link, I sent it only as a sincere thank-you, with no expectation of any sort of quid pro quo. Yes, I feel rather warm and fuzzy about them right now. But this blog ain’t chopped liver, and my post provided them with some free PR, so it’s good PR on their part to make nice in return.

But where and how do we draw the line these days? How can we tell the difference between online connections that are sincere and helpful, and those that are exploiting us?

Take blogging, for example. When I first started this blog on New Year’s Day, 2009, I figured out early on that, if I wanted anyone to read it, it seemed like a good idea to join a few blog networks, like BlogHer, for instance. From that, I learned that the point of these was to encourage you to read and visit and comment on other people’s blogs, the authors of which might then turn around and read, visit, and comment on yours. That’s still a cardinal rule of blogging. Then somewhere in there, I joined Facebook, and a few more blog networks, and then figured out how to make and use widgets. And finally, I started getting the hang of tags and categories and having my webhost submit the blog to search engines periodically. Somewhere along the line, I joined the Twitter-verse, and gave the blog its own Facebook page. And pretty soon other cancer and healthcare and niche networks were sending me emails and asking me to join them, so I did. Not all of them, mind, but some of them.

It didn’t take long before I encountered the phenomenon of blog awards and badges. These have run the gamut, from the friendly and sometimes whimsical conferring of appreciation by a few loyal readers who are bloggers themselves, to out-of-the-blue awards given by aggregate resource sites like Healthline.com. I think my favorite was the one organized by Katherine of ihatebreastcancer, who asked readers to nominate those of us who were deemed ‘disruptive breast cancer bloggers.’ I was proud to share the distinct honor of receiving one of the first-ever MAAM of the Year Awards (for the Mammogramatically Challenged And/Or Also Metsters) with five other worthy sisters.

In the best circumstance, these sorts of awards can serve as a kind of uber-networking, and let’s face it, it’s always nice to be appreciated. By anybody. But a lot of them occupy a gray area. Some of the early ones I encountered worked more like chain letters or even pyramid schemes of a sort, where your acceptance of an award was contingent on your passing the award to ten others, who then had to pass it on, etc., ad infinitum. Others aren’t so much awards as they are symbols of belonging to some aggregate network, like the badges conferred by NavigatingCancer.com, where you submit your blog for review, and if it is deemed apt, you’re allowed to display their badge. Then there are those that are more complicated, also set up by aggregate sites, with categories and some sort of formal nominating process and voting and such. An example of awards that occupy this latter category are those conferred by WEGO Health.

“Toto, I’ve a feeling we’re not in Kansas anymore.”

It’s very flattering to be nominated for anything, but I do try to vet these things as best I can, especially when they come from aggregate sites. Take my Healthline.com award, for example. I was notified by email that I’d received the award, having never heard of them before. So, I checked out the site first. On their site, it’s easy to find out what their mission is, what their advertising policy is, and who their company sponsors are. I might have been put off by some on this list if it weren’t for the diversity of it and their transparency in making it readily accessible. The sponsors list includes “Aetna, Comcast Ventures, GE, Investor Growth Capital, Kaiser Permanente Ventures, Reed Elsevier Ventures, US News & World Report, and VantagePoint Capital Partners.” I don’t begrudge an aggregate site having sponsors to stay in business, as long as their policies and sponsors are clearly listed. More importantly, on this site, their editorial staff and medical advisors are also clearly listed, and they display the HONcode badge on their site.

HONcode badges are conferred after an application process conducted by the Health On the Net Foundation, an international, non-profit oversight group, accredited by the Economic and Social Council of the United Nations. HON reviews healthcare sites of all sorts, by which it “promotes and guides the deployment of useful and reliable online health information, and its appropriate and efficient use […and] offers a multi-stakeholder consensus on standards to protect citizens from misleading health information.” One of these days, I may get around to applying for their badge myself. When you find the HONcode badge on a site, you can feel some assurance that the site’s content and accuracy have been reviewed by an international team of experts. You can read more about them here.

When I received an email from WEGO Health, notifying me that my blog had been nominated for a health activist blog award, I tried to repeat the above vetting process. And ran into some frustration, akin to those circular voicemail menus we all run into when we’re trying to call our insurance companies. Let me just say in the first place that WEGO does not display an HONcode badge. On their ‘About’ page is this statement: “Full-disclosure: WEGO Health funds its support for our network through transparent, community-vetted advertising and sponsorships from health companies: research, content development, education, events, conferences, distribution programs, ad networks, and more. We believe a solid business model helps us to provide an enduring, self-sustaining home for our members.” But when you try to find out who exactly these advertisers and sponsors are, you can’t, at least not easily. There is no search box on their home page and no sitemap. When you click on ‘Sponsorship,’ you only find general statements. When you click on ‘Why We Have Sponsored Content,’ they merely elaborate on the above statement by adding “We believe a solid business model helps us to provide an enduring, self-sustaining home for Health Activists. Every Health Activist participant in a sponsored program is made fully aware of who they are working with and how they can use their experience with WEGO Health to empower their communities. Every sponsor program or ad is clearly marked and all sponsored content (including ads, videos, and landing pages) will always be identified. Everything else is opinions and original work from our Health Activists, our editorial team, or WEGO Health.” Fine and dandy, but can’t you just tell me who these sponsors and advertisers are? Finally, after endless scrolling and clicking, I discovered that if I hovered over ‘Community Education’ and clicked on individual “sharing hubs” topics, I could see on the individual project links that a few pharma companies showed up, like Novartis and Sanofi. A list would have been much easier.

“Pay no attention to that man behind the curtain.”

I don’t think it’s too much to ask that if you declare your transparency, visitors should be able to click on one link to find out who funds your projects, pays your bills, and provides expert oversight on your content. And by oversight, I don’t mean your staff list. I mean your advisors. You’re either transparent, or you’re not. Making people hunt all over the place for a sponsors list is not transparency in my book. Big fail, WEGO. Time to redesign your site.

So, I tried a little seach engine digging. That wasn’t extraordinarily transparent either. What I did find, however, were several links about FDA hearings that took place in 2009 about whether or not marketers for healthcare companies and big pharma should participate in online social media, and how their presence should or should not be regulated. Basically, WEGO, which made a presentation at the hearings, was in favor of healthcare companies’ and pharma’s participation, in order to promote communication between companies and the end-users of their products. Also weighing in at these hearings was Ogilvy, a large marketing and social media specialty firm, and WebMD, who, like WEGO, has sponsored content on their site. Unlike WEGO, WebMD displays an HONcode badge, and clearly identifies content sponsored by their advertisers on their home page. I couldn’t find a list of their advertisers and sponsors either, but they do have a sitemap with links to their ad/sponsor policies.

Somewhere or other, I did manage to find out that WEGO itself serves as a corporate sponsor of DigitalHealthCoalition.org, which in turn partners with and/or is sponsored by pharma companies such as Roche, Sanofi, and Novartis, as well as JUICE Pharma Worldwide, a pharma marketing company. It was also interesting to note that in WEGO’s slide presentation to the FDA, they made several statements regarding agreement among ‘health activists’ on the assertions they made, but the activists polled were all WEGO health activists.

Oy. And you thought you were going to read a simple ol’ blog post, didn’t you? As far as those FDA hearings were concerned, apparently, the FDA ended up dropping social media from its resulting guidance agenda. In a way, I can’t say that I blame them. The whole thing has given me a large headache.

“Put the patients at the center and ask them what they want to do.”
~ Gilles Frydman, founder of the Association of Online Cancer Resources

By the way, that last bit of info on the FDA was reported on the Pharma Marketing Blog, which is written by John Mack, who is an independent writer and podcaster, and who is careful to assert that he is not a paid consultant to pharma. When I was trying to sort through all the above, I came upon another one of his posts, which includes an interview with Gilles Frydman, perhaps one of the most influential patient-centered social media pioneers you’ve never heard of. Mack writes, “In 1995, soon after Gilles’ wife, Monica, discovered that she had breast cancer, Gilles created ACOR [Association of Online Cancer Resources] and the world of Internet resources for cancer patients has never quite been the same since. ACOR’s 159 listservs deliver over 1.5 million email messages per week, none of which you can find on Google.” The reason you can’t find ACOR on Google is that Mr. Frydman had to remove its exposure to search engines to protect his list-users’ privacy, after an incident he describes in his interview with Mack, which you can listen to here.

Mr. Frydman is one of the social media patient advocates who does not think that pharma marketers should have direct access to patients via social media. He opined that the FDA hearings were something of a sham, in that the participants did not, in fact, represent patients at all, but their own agendas. In the above post about Gilles Frydman, Mack goes on to say, “There are many people out there who CLAIM to speak for patients but who are actually running businesses that aggregate patients in order to serve them up to marketers. Gilles suggested that the industry BYPASS these middlemen and go directly to the patients who use social media.”

Hmmm. What’s the take-away from all this? Well, for me, part of it is to underscore something I already knew. Which is that, like everything else, accepting blog award nominations from aggregate sites requires a lot of caveat emptor. In the meantime, I have to admit that I haven’t been entirely comfortable with this latest WEGO nomination process from the get-go. As requested, I put the nomination badge on my sidebar the other day, and on the blog’s Facebook page, and it’s been heartening to have it endorsed by my readers. But you know what? I don’t need an award to know what you think. That’s the thing with blogs — readers can comment on them directly. And whether I get awards, badges or what-have-you doesn’t make a blind bit of difference with regard to my motivation to write in the first place.

Another great thing about blogs and sidebar badges? Select/right-click/delete.
*


If you can possibly stand it, here are a few more interesting links about patients, pharma and social media:
(1) From Medical Marketing & Media, Between patients and pharma online: a disconnect
(2) And from Pew, the results of an in-depth survey on the Social Life of Health Information


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This entry was written by Kathi, posted on Wednesday, December 12, 2012 at 04:12 am, filed under Health & Healthcare, Making A Difference, Money, Insurance, Access, Research and tagged , , , , , , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

35 Responses to “Overwhelmed in Oz: How ‘Healthy’ Is Social Media?”

  1. Your columns/blog entries are the perfect antidote to grading a batch of student papers. Always thoughtful, well-researched, well-written, informative. Thank you, KAK!

  2. Thank you, Jeanne. Happy to help. 🙂

  3. Ack! Call me cynical, but first thing I do when sisters get excited over a website that culls information in seeming benevolence is to scroll down and see if it has a pharma sponsor…sure, these drugs are keeping me alive, but I still have a sour taste for the manufacturers.

    Sorry your awesome nomination thing turned out to be somewhat a wolf in non-transparent sheep’s clothing.

    {hearts}

  4. Shel, it was much more fun for me to grab the reins on this and take it for a good gallop than it was to stick a badge on my sidebar. I hate this sort of bat excrement. I live to write posts like this. 😉

  5. I’ve had several emails from people wanting to promote also Kathi and to be honest I delete them.. My blog is a diary mixed with questions .. nothing more!
    Hope ur ok .. xxx

  6. dear kathi,

    holy shit! i KNEW there were lots of reasons i wasn’t cut out to be a blogger at this point in time; chemo brain time, post tx for ST IV mets BC. just thinking about writing in retrospective mode about the last year’s gig in big C’ville, made my brain ache. still…i love to write, and i do feel i have a lot to offer…and i am not giving up – but for now, i think i have a lot to learn. i am completely in awe of your execution of this post. your writing style is so compelling, and your tenacity to dig deep, find the truth, and then share it with such clarity and passion excites and inspires me, to say nothing about how much it thrills me to know that entities who say they are transparent when they are not are exposed. sneaky bastards.

    love, XXOO.

    karen, TC

  7. Hi Kathi,
    Thanks for this informative post. I’ll have to read it again. And again. I’m with you on being a bit cautious/skeptical about these blog award nominations & such. If truth be told, I didn’t put up my little endorsement badge on my FB page until I saw you had done so! I figured if it was okay with Kathi, it was okay with me. I always hesitate to put up badges anywhere because who’s really benefiting, right? Having said that, it is nice to get recognition… My favorite part of this post, (on first read through) is that yes, the only recognition that really matters is the recognition that comes from readers when they comment directly whenever they choose to do so. Readers matter to bloggers more than awards and badges. So thank you readers! And thank you, Kathi, for this post.

  8. Really fascinating post, Kathi. And I quite like the point you make about this being a social medium – we don’t need awards to know our readers like the blogs/tweets/posts, etc. The beauty of online is the immediacy. And honestly, every time I get a comment on my Bumpyboobs, I feel like I’ve won an award. That’s corny sounding, but true. Having an exchange is really the best reward.

  9. Thanks, everyone. You’re here, so I rest my case! LOL

    Catherine, nice to see you. And no, it doesn’t sound corny to me. At all. We’ve all had that experience of someone letting us know how much it has helped them to read something we wrote, too, which is the best of all.

    Well, Nancy, now you know why I removed the badge…!

    And Karen, anyone can be a blogger. First and foremost, it’s for you, a place to express yourself, sort things out. A blog is really anything you want to make it. Writing can really help us wade through the morass. So, go ahead and do it. A lot of us have learned to write — and learned to write better! — by blogging. Every voice is valuable and adds so much to our conversation. It’s especially important, too, that we hear from women with mets. I know you would have a lot to offer. xoxo

  10. Hi Kathi. Great post. As I am navigating my way with blogging. I also put my WEGO nomination up when I saw Nancy’s. I agree with you though that it is a bit confusing. At the same time, I was so excited…it’s nice to be recognized. There is one badge though that went nowhere. It’s called the Inspirational Blog Nomination. Someone nominated me for it and if you google it…you’ll find a pretty graphic and it asks you to nominate 15 other people but that’s about it. Thank you for sharing all the info about blogging and reminding us of what’s most important!

  11. “I’d like to thank my piano teacher, and all the little people who helped me while I clawed my way to the top…” Oh, sorry, that’s my Oscar acceptance speech practice reply.

    Most important point here (in your original post and comments) is “the only recognition that really matters is the recognition that comes from readers when they comment directly whenever they choose to do so. Readers matter to bloggers more than awards and badges.” So, so true – a thoughtful comment can make my day!

    For me, too, being notified of an unanticipated blogging award leads to a long search to find out who the heck are these people? I too was awarded by Healthline.com this year (“Top 10 Online Influencers: Heart Disease”) and I too had never before even heard of Healthline. Their judging criteria suggested over 40 criteria (mostly numerics based on how busy we are, tweeting, answering comments, posting new articles, adding subscribers/followers/friends apparently. I have to say it: I was really flattered, especially to see my fellow nominees, all heavy-hitters in the Wonderful World Of Cardiology. Except for one puzzling award-winner: Deepak Chopra, who I think made this list purely because he’s world-famous, albeit not even remotely among heart health circles.

    In fact, I’m thinking of starting up my own awards committee (membership of one). I’ll have to give it a catchy name (“World’s Best…” sounds pretty good, I think). Then I’ll tweet nominee announcements like crazy (as WEGO is now doing) which I hope will drive traffic to my site, possibly adding even more subscribers/followers/friends. And you know what THAT means? More future awards for ME!!! 😉

  12. LOL, Carolyn. BTW, nice to see you here. I send people and patients to your blogs all the time. Your myheartsisters.org blog has been especially helpful to me personally and to my cardiac patients. And how can anyone like me not love a blog called The Ethical Nag?? Yes, the Healthline thing was done rather ably, I thought, and I was quite impressed that the editors actually had researched and read our blogs, and no silly, fake nominating/voting process was required. And I think you’ve nailed the real motives behind WEGO’s nonsense: more site traffic and more potential fodder for the pharma marketers riding their coattails. Can we say ‘unvarnished exploitation?’

  13. I am so glad that you posted this. A bummer about WEGO, but in that end it’s all good.

    I think, for me, the real joy of these nominations is that people who read my blog have nominated me. The daily comments, the Twitter responses, and the people who write to say “thank you, you put into words what I cannot.”

    It’s not the “award” that is important at all, it’s that my peers saw fit to elevate those comments into something tangible. That means the world–nay, universe–to me.

  14. Thanks, Scorchy. It is a bummer, but the lack of clarity about the mechanics of the ‘endorsing’ process and the overkill with the emails, postings, and all those award categories bothered me from the start. Plus, why couldn’t they have provided easy access to a list of those who were already nominated, something we could just click on and add to? And what’s with nomination badges anyway? Initially, these appeared to be failures of poor technical design. But when tech details don’t work, and an entity seems to toot its own horn too loudly, I start to wonder if I’m getting scammed. And I remembered catching a bad vibe about WEGO from when I first encountered them a few years ago. So, I started to turn over a few rocks…and now I feel like we’ve all been had.

    It’s our readers and friends who matter, and their appreciation means everything. And we won’t keep it if we don’t protect our own integrity and credibility.

  15. Glad I saw this! I recently endorsed someone on WEGO, not knowing anything about them. I was a little suspicious about all the prodding of tweeting my endorsement, etc. but a week later, I receive a tweet from WEGO informing me that someone has nominated MY blog! I’m truly flattered … except for the fact that I DON’T HAVE ONE! I knew there was something fishy …

  16. OMG, Blonde!! That is priceless, getting nominated for something that doesn’t exist! Really, WEGO has turned itself into a spammer in ‘health activists’ clothing. What urks me, though, is wondering how many of their activists are trying to operate in good faith, without feeling beholdin’ to the corporate marketers who sponsor their projects. A slippery slope…

  17. Kathi, I’m the CEO of WEGO Health, and your post has me looking hard at our web site and our communications with the Health Activists we serve. You make good points – our sponsorship section needs to be clearer, and I’m going to ask for your help with that (along with the entire transparency issue).

    While you don’t know us yet, you will discover that WEGO Health is not beholden to or influenced by our sponsors or advertisers. In fact, we see sponsors as a means to fund our mission of empowering Health Activists – and we’re glad to be diverting funds from misguided TV advertising (for example) to the Health Activist community.

    Our first priority is the support and empowerment of Health Activists like you. I’m proud of our 2009 testimony to the FDA, one of the only to bring the voice of patients to that proceeding. I’m proud of our Press Corps that allows Health Activists to report on conferences, I’m proud of our Speakers Bureau that always invites them to “tell pharma what they need to do better,” and I’m very proud of our community-driven Awards.

    We are on your side, we are not selling anyone out, and both our members and our very small and dedicated team deserve to be engaged directly to see what we’re really all about.

    We make mistakes, no doubt. I’m ready to hear how we can fix them, and I’m going to make every effort to contact you directly to do that.

  18. Thanks for responding, Jack. Clarity in web design and navigation is key when any organization is running a health-related site. Especially with what WEGO is trying to do, you must look at your site as a new visitor, as a patient, and a hard-nosed consumer, and anticipate the questions your visitors might have. Poor site design, lack of clarity in mission statements, etc., all of these comprise one of my pet peeves in general. And I realize it also takes a lot of work. But when a visitor can’t find something easily, it makes an organization look, at best, like they are lacking in professionalism, and at worst, like they’ve got something to hide.

    As I said in the body of this post, I don’t begrudge an aggregate site having sponsors and advertisers, even pharma. We all depend on medications to survive cancer and other life-threatening health conditions. But it’s naive not to appreciate that many of us feel that pharma has a lot to answer for, and that there are many instances when pharma appears to push an agenda that may not be in our best interests. In an age when we are bombarded with TV ads for drugs, the names of which the average person cannot even pronounce; when so many after-market drug research studies are funded by pharma and have been found to have a bias in favor of the drugs that are studied; when doctors prescribe these drugs without providing patients with a full discussion of even the listed side effects and do not monitor them thoroughly; when Zeneca Group, now known as AstraZeneca, makers of several cancer drugs, sponsored the launch of Breast Cancer Awareness Month; you have to forgive many of us for suspecting that pharma’s motives are less than altruistic. And WEGO ought to anticipate our suspicions and address them.

    There are a lot of opportunities for pharma to provide better and easier portals for individual patients themselves — not just their doctors, and not interested third parties — to report problems with drug administration and side effects. Some of them do provide ways to communicate these issues, but they are not easy to access. If WEGO is truly concerned about improving communication between pharma and patients, then this might be something you could work on, by encouraging pharma to simplify individual patient access to reporting avenues and even to include links and contact information for patients on your own site, clearly and visibly. That would be activism. That is something we would all welcome.

  19. Blonde Ambition’s comment takes the cake:)

    Let’s run a poll: who HASN”T received a WEGO nomination? Bingo.

    Great work, Kathi. I heard about the ACOR site when I first joined Twitter and have had mixed success with their lists – the most active one is on melnoma. Fantastic resources and an incredibly informed subscribers.

    Old world or new digital world: snake oil is still snake oil.

    Jody

  20. Kathi, ouch – but fair; we deserve the ding on web design, and we’re going to work on changes immediately to anything we feel might be misleading the community. I am hoping you’ll help us make that better by critiquing some ideas very soon.

    We know we’re inviting scrutiny by putting Health Activists together with sponsor companies – but we’re betting you would rather have a chance to meet these companies and to change what they’re doing directly. We spend a lot of time educating companies about transparency, working with Health Activists before “seeding” a community, and getting real and personal despite regulations.

    I’ll be in touch.

  21. Jack, if it makes you feel any better, it’s not just WEGO’s site that I think needs a retool. My own professional organization, the American Physical Therapy Association, had an utterly ghastly website for years. I’ve noticed lately that they have cleaned it up considerably. Maybe this should be my next career, to educate myself more fully on web design & help health organizations make their sites more user-friendly. Hmm.

    In general, healthcare in the U.S. is at a crossroads in cyberspace. The push toward electronic medical records on servers that still can’t ‘talk’ to each other, the increase in the use of the internet by patients to educate themselves, the high saturation of sites that attempt to provide health & medical information, all of these have left massive bumps and potholes in the road. And we are all challenged to repave this cyber-highway, my own blog included. But the potential to improve healthcare delivery — and maybe even bring down healthcare costs — is huge, so it’s worth the considerable effort it will take for all of us to join the road crew.

  22. Jack,

    And some of us are not as savvy as Kathi when it comes to spotting possible pitfalls to the naive and exhausted patient. I sincerely hope that this was not banked upon when your designers did their designing, and your planners did their planning. Your end game must be clear and easily seen as sincere.

  23. Well said, Shelli. Thank you.

  24. Kathi
    I am at least one of the people who nominated you and every other person here. I did so with earnest care and sincere belief in your work. As for the nomination of Blonde Ambition, that was my mistake! I wanted to honor your involvement in activism, but obviously used the wrong category!
    As for WEGO health, I have nothing but good to say about my experience with them. They have invited me to sit on three panels–Johnson&Johnson, Genentech, and ePharma Summit, and I was encouraged to let ’em have it, ie be completely honest about their credibility gap with the health activist community. It was such a thrill to speak to a room of executives and tell them that we don’t trust them and why, and that one reason our followers trust us is that we are not paid for our work; at least, I am not paid, and I don’t know of activists who are.
    That’s not all I had to say, but it was certainly included in my presentations!
    So, I apologize for any confusion I might have caused with my nominations, but please know that they were sincere!
    Jamie

  25. Thanks for the comment, and the nomination, Jamie, and the vote of appreciation it represents. I appreciate your sincerity, and my thanks are also sincere. Personally, I don’t think that the responsibility for any confusion that resulted from your nominations rests with you. I found the nomination process very confusing myself and, because of that, shied away from it, even before I researched this post. I think your experience underscores the need to simplify & clarify the process.

    Good to hear about the discussion panels with pharma, Jamie. Would love to hear more about them. When did they take place? What was the agenda? The outcome? The follow-up? Are they ongoing? Jack, here’s something to make known and available on your site, especially in light of your community projects’ funding sources. It seems like you’re walking a fine line here, and if I’ve gotten the wrong impression about how WEGO interacts with pharma, then so have others.

  26. Glad that WEGO contacted you and there is a dialogue that is happening. That’s a good thing. I’m happy to see it. Happy to help along the way if user testing or outside opinions are needed.

  27. Kathi – this is an excellent, well-researched post as always. Keep up the great work.

  28. Wowee! Can I nominate this post for the best blog post of 2012.. sponsored by JBBC 😉 (no pharma input!) Kathi, I have so much to say … where to start?

    I haven’t displayed my own nominee badge (yes, I was nominated too), not because I have anything against WEGO.. for the record, I am an admirer of their community building, and while your post was an eye opener for me.. to be honest, it hasn’t changed my mind about the commendable work they do in bringing diverse health bloggers together. It was good to see the CEO join the debate here and I do believe your concerns have been taken on board. I am happy to see bloggers getting recognition, so I support these awards and WEGO health. Now having said that, I am in awe of your detective work (I couldn’t help but think of Rachel when I read how deeply you delved) and I encourage all who read this post to stop and think about the matters you raise.

  29. Thank you, Marie!! Any comparisons with Rachel are especially meaningful to me. She set the bar high for us all, and I often feel her spirit at my shoulder when I am ‘on a tear.’ During one of our last Skype chats, she pressed me to keep digging into things, with that passionate urgency that Rach could muster like noone else.

    Thank you, Deanna and Scorchy, too. I actually haven’t stopped researching since I wrote this, and finding a lot more tangents to explore. More questions and food for thought to come.

  30. […] Accidental Amazon is challenging us all to think more carefully about online awards and her in-depth research made […]

  31. As far as I can tell, WEGO Health is a for profit marketing company, which has cloaked its core commercial mission through its use of organic terms such as patient advocates, patient leaders, patient social media, and so on rather than being up front that its goals are marketing for pharmaceutical companies.

    Do real pateint advocates/group leaders consume these WEGO materials? I doubt they would even notice these until the point when WEGO comes around to solicit privately to patient contact names they have mined off of pre-existing patient websites or forums. True grassroots patient leaders and the groups that they lead are getting their education from professional sources such as journal articles or conferences.

  32. What I think, too, Allie.

  33. Hi, I have a cartoon blog about my experience with advanced colon cancer. I received this email today and can’t figure out whether WEGO will help me communicate my opinions and frustrations to health policy makers and health providers, or whether it’s a data mining operation that can use my opinion, and even my voice, for commercial or political purposes.
    It’s tempting, but I’m suspicious that WEGO executives are not cited as participants in public advocacy. I didn’t see them listed, for example, as aligning with the Affordable Care Act, or providing guidance about state insurance exchanges.
    AMY

  34. I think my comments were abbreviated. I’m trying to find out more about WEGO. Have they advocated for Affordable Care Act, or published information about the insurance exchanges? Or are they data miners, ready to sell my information, even my voice replies to their surveys? I write a cartoon blog about my experience with advanced colon cancer, and sometimes I draw politically inspired rants. My readers are global, but I doubt my community is empowered by my drawings, other than emotionally.

    thanks again
    AMY MARASH
    @cancerISsoFUNNY

  35. […] enough, the last time I used The Wizard of Oz metaphorically was in another post about the risks of exploitation by social media. But, however much I may let the fur fly here, I do try not to be unnecessarily rude to […]

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