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