What really goes on in your friendly online patient group

~ Carolyn Thomas

by Carolyn Thomas  ♥ @HeartSisters ♥  3rd in a 3-part series:

It turns out that online patient discussion forums may not all be the noble grassroots support groups that I once believed them to be. For example, unless they are small independent online sites, or have secure academic, government or clinical funding  (like Virtual Hospice, which operates its active end-of-life care community thanks to ongoing financial support from the Winnipeg Regional Health Authority and Cancer Care Manitoba), the site owners of most major online patient support groups are figuring out how to “monetize” their work. That’s how biz developers talk . . .

Make no mistake, my heart sisters: few online site owners (except for individual patients hosting those smaller private forums) are running a feel-good charity for us patients purely out of the goodness of their hearts. 

Many large sites accept paid advertising to generate income, like Wellsphere or Weight Loss Surgery Boards. The latter is a company that runs a number of big online patient communities for those who have undergone bariatric procedures, including LapBandTalk. Their sites offer advertisers a target market of over 200,000 members, promising what they call: “The most targeted weight loss surgery advertising in the world!”, selling banner and text advertising, “premium” surgeon profiles, corporate sponsorship of newsletters, mass emails, and both entire communities or specific forum topics.

Some sites actively solicit member donations, or sell “premium” memberships with certain perks (ironically, these sometimes include  benefits like exclusive access to “no ad” pages).

Patrick O’Keefe has been developing and managing online forums since the year 2000. He’s also the author of the book Monetizing Online Forums: A Practical Guide To Generating Revenue From Forums – The Right Way. In it, O’Keefe lays out the basics of how to make money from an online community by getting advertisers to pay to reach patients like you and me online:

1. Ad space sponsorship for a fixed time period at a flat rate (often referred to as “tenancy” on forums with a niche audience; advertisers who want to target patients with a certain condition pay to place ads directly on a forum populated with people like you living with your condition). With over a million page views so far, my blog, Heart Sisters, is regularly approached by advertisers to run these kinds of ads here. My answer is always the same: NO!  (In fact, I pay WordPress – my website host – an annual fee to prevent those annoying third-party Google ads from appearing here). My disclaimer page clearly states:  “This website does not permit any paid advertising, banners, commercial content, sponsorship, undue influence or receipt of personal favours, and is entirely self-funded. I am not selling (or buying) anything, and have no conflicts of interest to report.” If you too independently publish a blog or moderate a non-sponsored patient forum, do you have the same type of conflict of interest disclaimer clearly available to your readers?

2.  Text monetization. This is popular with online discussion forums because it pays very well, typically charging advertisers a cost per click fee of over $2 a pop. Every time you spot a double underline under a word or phrase in an online article you’re reading, it’s a visual cue to let you know which links are paid ads and which are not. But O’Keefe also warns site owners about link density – the number of links that are monetized per page. Too many paid ad links junking up a web page tend to alienate members of the online community.

3.  Advertorials. Paid advertising on an online community doesn’t even have to look like an ad. A discussion topic or “thread” can itself be a paid ad, but may look just like part of a discussion board started by the site’s real members.  The advantage for marketers is what they call “deeper integration with the community”.  O’Keefe warns that these threads should still be clearly marked in some fashion (with the words “sponsored content” or “advertisement”, for example) so that all site members can tell that this is a paid ad, and not a genuine conversation – but are they clearly marked as such? Be suspicious if a group member goes into way too much detail including product prices, ordering instructions, etc.

4.  Brand integration” – in which some of the other people you’ll be discussing health topics with on an online patient forum may not be patients at all, but paid employees of an advertiser. See also “Sock Puppetry, Astroturfing and the Marketing Shill Game”.

Patrick O’Keefe explains to site owners why marketing brand integration is so profitable:

“Bringing an advertiser’s brand into a forum is the best way to truly drive value to the business in both profit and engagement.

“You may have an opportunity to integrate them more deeply by creating a specific area on your forums within which a brand can host a dialogue on the questions users have, ask for feedback, and perhaps share interesting updates, as opposed to just broadcasting corporate press releases.
“Creative brand integrations move beyond traditional ads to offer more customized experiences that allow companies to interact with your member base.”

Still other online patient communities are in fact thinly veiled subsidiaries of drug or medical device companies.  For example, the drug company Sanofi (maker of diabetes drugs and insulin injection devices) jumped into social media to reach patients directly with a Facebook and Twitter presence, and patient engagement platforms such as Discuss Diabetes and TheDx.

Jeff Chester, executive director of the Washington, D.C.-based Center for Digital Democracy, adds:

“Pharmaceutical companies are using stealth marketing tactics by eavesdropping on patients’ discussions on social networks and tracking patients’ ‘digital footprints’ online to target them for advertising.”

But drug and device companies must tread carefully here, as a July 2012 study called “The Trust Factor” reported.  This survey of American adults found that 84% of respondents felt that pharmaceutical brands needed to prove themselves trustworthy before we would want to interact directly with them or other information sources online.

Trust may be a scarce commodity around Big Pharma these days. Consider the industry’s past forays into sponsored patient engagement, such as:

  • Johnson & Johnson financed The Fatigue Coalition – a patient-advocacy group that promoted off-label (unapproved) uses of the J&J drug Procrit for cancer patients, despite studies concluding: “These agents raise serious concerns about safety data and adverse outcomes. The review concludes that these agents SHOULD NOT BE USED for the treatment of fatigue in patients with cancer.”(1)
  • Mark Westlock, a former Pfizer drug rep from 1991-2007, revealed (in the ultimately successful whistleblower lawsuit that resulted in record-breaking $2.3 billion criminal fines) that the world’s biggest drug company among other Big Pharma partners had funded the “grassroots” advocacy group, National Alliance on Mental Illness, “in order to turn the nonprofit into a ‘Trojan Horse’ that would promote the antipsychotic drug Geodon for non-approved use in children.” The number of antipsychotic drug prescriptions written for children thus doubled to 4.4 million between 2003 and 2006.(2)

In fact, the pharmaceutical marketing website Dose of Digital now lists more than 350 examples of online health forums and social media sites run by drug or medical device companies.  See also: Has Industry Co-opted Patient Engagement?

The potential payoffs on benefits like brand loyalty and being able to directly engage patients on an industry-funded online patient community can loom large. For example, as Direct To Consumer health care marketer Richard Meyer suggests to his Big Pharma clients:

“A great example would be people with Irritable Bowel Syndrome (IBS).  People online who are living with IBS are actually coaching others on how to live with the health condition along with do’s and don’ts.  

“Wouldn’t it be beneficial to have that information shared on a branded website for an IBS drug?”

Wouldn’t it be “beneficial” indeed? At least, to Big Pharma.

Consider also sites such as Patients Like Me, a popular for-profit online patient community. Patients Like Me makes its money by selling health data gathered from its patient members (with certain identifying information removed) to their “partners” (providers of drugs, devices, equipment, insurance, medical services) for scientific or marketing research purposes. The biopharma company UCB (manufacturer of epilepsy drugs Vimpat and Keppra) already sponsors the site’s epilepsy forums.

But the concern with this type of site, as described in The New York Times:

“While PatientsLikeMe is transparent about how they market patient data, patients have to be aware of the balance between sharing their experiences with other patients and being used for profit. 

“Unlike television viewers, who can immediately spot direct-to-consumer drug ads, consumers on some health sites may not fully understand that they could be subject to marketing or marketing research, even if they have read the site’s privacy policy.”

“Some people share their health information for the sake of the greater good. Yet they typically have no way of knowing whether their health profiles contribute directly to the development of more effective treatments — or are simply mined to create more effective drug marketing.”

The online patient/support organization Inspire.com is another for-profit company which, according to a Washington Post interview with founder and chief executive Brian Loew, has over one million patient-members so far (that number is increasing by 1,000 per day, 78 percent of  members are women). Inspire’s revenue (about $10 million per year) also comes from advertising and from companies looking for patients to participate in clinical drug trials or in their market research campaigns for its “partners”.  It’s free for patients to join any of their 200 condition- specific support communities, but their paying clients include the top 10 pharmaceutical companies in the world, as well as most of the top 25, who are eager to pay for what Inspire.com pitches as “industry solutions” like “market research and promotional services.”  As the Post explained:

“Many of the research contracts come from pharmaceutical giants to carry out drug trials or marketing studies on everything from psoriasis (one of the most common ailments among members) to cancer. The contracts pay Inspire.com anywhere from $50,000 to $750,000, Loew said. It usually amounts to about $1,000 per patient for market research and up to $10,000 per patient for clinical trials.”

By the way, online patient groups are not the only ones selling information about us to third parties, as reported by the Pulitzer-prize winning non-profit online newsroom called ProPublica earlier this year.

Consumer companies called data brokers can capture information about your “interests” in certain health conditions based on what you share and search for online. For example, they may collect personal information on lists of people classified as “allergy sufferers” or “dieters.” They can sell data on whether you have an “online search propensity” for a certain “ailment or prescription”, or even to evaluate whether you’re making healthy choices.

One health insurance company, for example, recently bought personal data about more than three million people’s consumer purchases in order to flag health-related actions like purchasing plus-sized clothing, as the Wall Street Journal reported.

Most of us, according to ProPublica, have no idea that data brokers even exist.

And just last week, the British Medical Journal published a study warning users of 43 popular health and fitness phone apps that they should not assume that any of their data is private or protected, according to a report by the Privacy Rights Clearinghouse, a California non-profit group. This warning also includes personal information about diet, daily exercise routines, medical and mental health conditions, online searches for disease or drug info, and details shared with friends through an app, a website, or through social media sites such as Facebook.(3)

The WomenHeart online patient community promises this pitch to the company’s potential paying partners through its website:

“Industry can access these engaged patient populations in a variety of ways, including market research, clinical trial recruitment, issues analysis, opinion surveys and promotion of brand awareness.”

But does the strategy that online patient groups use to make money really matter to the patients who become members of these groups? Shouldn’t entrepreneurs who launch these for-profit patient sites earn a living like the rest of us?

And does anybody besides me care about being used to increase industry “brand awareness” or any of this?

When I first discovered the WomenHeart site shortly after surviving a heart attack and being discharged from the CCU – and while in a profound state of shock over what had just happened to me – I simply felt relieved to find this community of other female heart patients.

I was new. I’d never joined any type of online group ever before – what did I know?

I was desperate. I didn’t read any of the fine print explaining Inspire’s online patient communities.

I was ignorant. It never even occurred to me to research their privacy policies.

And I was naïve.  I had no clue such sites make money by selling my patient data to third parties.

My advice to other patients sharing information online is now this: 

  • Be cautious.
  • Be anonymous.
  • Read the fine print so you clearly understand any online patient group’s privacy policy, and what will happen to the information about yourself that you so freely share to your online support group friends.

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1)  Minton O, Richardson A, Sharpe M, et al: Drug therapy for the management of cancer-related fatigue. Cochrane Database Syst Rev 7: CD006704, 2010.

(2)  Jim Edwards: “Pfizer Turned NAMI Into “Trojan Horse” to Push Geodon Off-Label to Kids, Suit Claims,” BNET, 16 Sept. 2009.

(3) Michael McCarthy et al: “Experts warn on data security in health and fitness apps”. BMJ 2013;347:f5600 doi: 13 September 2013

NOTE FROM CAROLYN:   I wrote much more about how women seek out patient support in my book, A Woman’s Guide to Living with Heart Disease. You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use the code HTWN to save 20% off the list price).

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♥  This is the third of a 3-part series of blog articles on online patient support groups. The other posts in the series are:

See also:

Why Big Pharma Wants Your E-Mail Address

Has Industry Co-opted Patient Engagement?

“Seeking Social Solace”: why aren’t heart patients online?

Health information online: how to tell the trash from the truth

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Published by Carolyn Thomas

33 thoughts on “What really goes on in your friendly online patient group”

  1. Pingback: GSK : Licence To (K)ill

  2. Great post Carolyn, and a timely one! More on that later when I have more to report. As we look for ways to broaden the reach of Symple, we are learning so much about marketing in the health space. Suffice it to say, all is not as it seems!!

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  3. Great series, Carolyn. And good to see other friends here from the blogosphere.

    I tried Google Ads briefly & fairly unobtrusively on my blog sidebar. It wasn’t bad. The ads were well related to the individual post content for the most part, and when they weren’t, the results were comically benign. But I decided fairly quickly that I just didn’t feel comfortable with it. I’ve been supporting my creative output for years now by having a mainstream day job (in healthcare, as it happens) so frankly, making a few extra pennies this way to support the blog didn’t make any difference to my wallet. I’d rather pay my webhost every month & have more control. The whole badge/blog award thing is another can of worms. Caveat emptor all around. Bloggers beware.

    I found a great deal of solace & some long-term friends on a peer forum when I was diagnosed with breast cancer. It was a great experience for the most part, but the flamers and near-flamers ultimately drove me to leave.

    It’s understandable that one would run into people in a highly emotional & even volatile state. After all, we’re usually dealing with life-altering and life-threatening diseases on forums. But the attacks on others, the inconsistently applied rules by site admins, and the spamming that began to creep in, made me nuts.

    Eventually, I found that the more sane of my forum friends began transferring to Facebook, especially as we began to move past initial acute treatment. Not that Facebook is immune from flamers & spammers, heaven knows. But there’s always the ‘unfriend’ option & ramping up our privacy settings. Twitter is a whole other animal, and so far, I can only hack it in limited doses.

    Good tip on putting that disclaimer language on the blog. Thanks, as always, for your excellent efforts.
    Kathi

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    1. Hello Kathi – thank you for your comments here. Interesting to note the shift towards smaller Facebook forums for your ‘more sane’ online friends – that ‘unfriend’ option isn’t available on major online patient forums (I don’t think!) Indeed, as in my own experience with a male troll’s inappropriate behaviour on the WomenHeart online support group, members who complain may well be the ones sanctioned by a site’s administrators – not the troll.

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      1. I had a friend on a particular forum thread who was booted off by the admins twice after she herself was attacked by another hysterical forum user. Some of us messaged the admins in protest, to no avail. She opened a new account under a different ID & the admins found her & booted her off again. She finally gave up & went to another, smaller, forum. I left not long after that. Craziness.

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          1. Yikes…. I too once had my online comment removed (as I wrote about here) because I had invited a (male) troll who had been repeatedly combative, insulting and disruptive to leave our group after he had raged: “I am sick of hearing the down trodden women were (sic) heart problems are concerned!” (He says this on the WomenHeart site, a forum completely devoted to the subject of women’s heart disease!) But the WomenHeart site admin ended up removing MY post, not his, insisting that telling a member to go was against their policies. My reaction: “OMG, the trolls are winning!” But a happy ending: after several other women apparently joined me in inviting him to go, his posts were removed.

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  4. Es raro encontrar a blogers con conocimientos sobre este mundillo, pero creo que sabes de lo que estás comentando. Gracias compartir un articulo como este.

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  5. What a great article, and a great service to patients looking for help online. On our non-profit patient education website, A-Fib.com and in our book, we publish online resources and include this warning:
    Word of Caution: Some web sites for A-Fib patients may be biased toward a particular technique or approach, often because of financial, political, or other ties to medical devices manufacturers, pharmaceutical companies, hospitals, doctors, or other organizations. When searching the Internet for info on A-Fib, ask yourself, “Who is paying for this website, and what is their agenda?”

    Patti and Steve Ryan
    Atrial Fibrillation: Resources for Patients

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    1. I love your website, Patti and Steve! An excellent resource for anybody seeking credible science on atrial fibrillation plus compelling real-life stories from others living with A-Fib. Congratulations – thanks for sharing it here, and for reminding us of the important question we should all be asking when we go online: “Who is paying for this website, and what is their agenda?”

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  6. Hi Carolyn,
    Thank you for this in-depth examination of some things to be on the lookout for. This is part of the reason I mostly avoid forums and also shy away from the various badges offered for this and that.

    I find that generally such things are mostly self-promotional. It’s always good to be wary. I couldn’t help but take notice of your words about Google ads. I just started accepting them on my site as a sort of experiment. I don’t know if this will be a big turn off for my readers. I hope not. It’s not like I’m making much at all with them, but these days the pennies add up and for me and my family they matter.

    What I find really annoying are all those attempts from so many out there to get free this and that via my little old blog. Almost every day I hear from someone wanting something. Drives me crazy when it seems some don’t even know what exactly I’m blogging about. Regardless, everyone definitely needs to be mindful of all that lurks out there. Much of it is shady and self-serving, but luckily there is much that is good as well.

    Thanks again for this thought-provoking write-up. And your advice to be cautious and to read the fine print is spot on!

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    1. Hi Nancy! Re paid ads: I don’t mean to cast any dispersions about small ads on personal blogs run by patients (as opposed to a big online forum with thousands of patient/members). By the way, speaking of your blog, I love the fact that yours, Nancy’s Point, is called that because you have a ‘point’ to share, but also that you live on a ‘point’ of a little lake in Wisconsin.

      I know what you mean about others online who want something from your “little old blog”. I’m sure most commercial endeavors don’t give a flying fig what you are writing about – likely just a giant spam-generator in the ether spewing out this mass junk mail. I also get pitches from industry wanting me to publish their ‘guest posts’ on my site on irrelevant topics like mortgage insurance or picking a good college (?!?) No wonder bloggers consider accepting ads – we’re volunteers, and nobody’s paying us for the time it takes to deal with these annoyances.

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  7. Whether it be patient support groups, well established diabetes organisations or even public health there is enormous potential for conflicts of interest. It is up to individuals to use discernment and their intelligence.

    I was involved with running the first online patient support group in Australia (I retired from an official role some years ago), we had a few thousand members. After holding out against any formal sponsorship we relented and allowed very clearly labelled advertising in our newsletter and we ensured that we had advertising from as many pump companies and meter companies as possible to avoid any claims of bias. We established the group as a charity and those of us who put in untold hours of volunteer never got a cent.

    On the other hand, Australia’s national charities for diabetes pay huge salaries to 100s of staff and they make profits out of selling meters, diabetes products & paraphernalia, books etc and at one stage, one of them was the national distributor for a pump (talk about a conflict of interest in commenting on treatments). I suspect Australia isn’t the only country where the established d organisations have these conflicts of interest.

    I know I benefited enormously from my involvement with online support and I know others have too. By all means be aware of potential downsides but please don’t throw the baby out with the bathwater.

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    1. Thanks very much for sharing your perspective here, and especially for all your hard work in running your online site for those living with diabetes. The educational and support benefits of such groups for patient/members are well-known; it’s hardly “throwing the baby out with the bathwater” to remind all patients who go online for help that they should – and must! – be aware of the financial realities going on behind the scenes.

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  8. Thanks so much for your astute review of ALL of these deceptive practices!

    I have been vaguely aware of them when visiting sites, but never thought much about the many implications. I am lucky to have fallen into a truly grass roots online support community that doesn’t accept a penny from anyone and is universally frustrated by the smatterings of marketing tweets that are timed to interfere with our weekly twitterchat meeting.

    Marketers, it seems, will stop at nothing to make a buck!

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    1. Thank you for sharing your unique perspective, Lori. Marketers are pretty savvy, increasingly so in a competitive marketplace. Patients are seen as a resource ripe for the picking. This is not necessarily a “deceptive practice” – simply an effective business strategy to make money. As Patrick O’Keefe writes in his book Monetizing Online Forums: A Practical Guide To Generating Revenue From Forums – The Right Way: “Creative brand integrations move beyond traditional ads to offer more customized experiences that allow companies to interact with your member base.” And what better and more profitable “member base” than patients who are eager to share even the most personal revelations online?

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    1. Thank you, Dr. S for raising such an important point on transparency. It’s not that online support groups do not provide good information and reassurance to patients (they do!), but that many of us patients are clueless about what’s being done with our shared information which, as Dr. Deborah Lupton writes (below), becomes “digital intellectual property” that’s no longer even owned by patients themselves, and can then be sold for profit.

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  11. You continue to inspire and inform me Carolyn – I confess to still being naive when it comes to certain aspects of social media and online forums so I am always grateful for the eye-openers I get through you!

    I too have been approached by companies wanting to advertise on my blog and I have no hesitation in saying no — however, I forgot about those annoying ads that pop up on WordPress from time to time – so you have reminded me that I really need to pay the extra to eliminate them.

    Thanks again for another illuminating and thought-provoking piece.

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    1. Thanks so much for your kind comments, Marie. I’m happy to pay WordPress each year to stop those Google ads because I find them SO annoying when I visit other websites. After you sign up for the WP ‘no-ad’ feature, why don’t you include that decision in a disclaimer page on your blog, too? I think we can encourage our readers to start looking for conflict of interest disclosures to help raise awareness that there are many of us out here who are not so ‘conflicted’. What do you think?

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  12. Hi, is this an on-line patient group or a blog? Are they one and the same? I’ve never been involved in one so I don’t know.

    I’m suffering with microvascular coronary disorder and I was looking for others like me; for support. After reading this posting, I’m scared to put anything out there! I didn’t realize all the production going on behind the scenes. I guess I have to pull back for security sake.

    If anyone out there wants to talk about having MCD I’m open to talk. Sounds like you can find my e-mail address. Thank you.

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    1. Hello BES – Heart Sisters is a blog. My readers do reply to articles here and thus we often have what you might consider group discussions by reading/reacting to what others share here. These are tiny, however, compared to the hundreds of thousands of registered group members on patient community sites like Inspire or PatientsLikeMe. I think you can find valuable support on these sites from others in the same boat – but you’re right, it’s very important to be informed about what goes on behind the scenes, and what’s being done with any information you share. Be anonymous, be careful – there is still much to be gained in online support groups.

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    1. Thanks for this link to an important article. I’m a big fan of your writing, and as you know have quoted your work when writing about digital health topics. I was struck by this statement in your article about the data patients share so generously in online communities:

      “Data have become treated as another form of digital intellectual property, owned not by the patients themselves but by the companies that encourage patients to upload their experiences that accumulate in the data archives they own and over which they have control.”

      Frightening…

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  14. Important post, Carolyn. It is a real problem that there are scant resources available to support truly independent patient voices. We are no different from the clinicians who enjoy the largesse of the pharmaceutical industry: in their case, despite their denial, there is considerable evidence that the influence of their funders is robustly demonstrated in their prescribing patterns. Correspondingly, we are probably unaware of how pharmaceutical funders’ biases affect our comments, our recommendations to peers, our choices.

    It seems to me that if, indeed our perspectives are as valuable as the health policy rhetoric currently claims they are, online patient sites that are free of the conflicts and biases inherent in commercial sponsorship should be supported by philanthropy and the government.

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    1. Such good points, Jessie – thank you for weighing in here. I suspect that the difference between industry influence on physicians/clinicians and online patient communities is that a doctor knows when he/she is taking money/gifts/travel from a drug company, while most patients have no clue which online patient support groups they belong to are taking money from the same companies.

      When I posted a link to the Yale Heart Study on Inspire’s WomenHeart patient group inviting members there to participate in this important study on ‘treatment-seeking delay behaviour’ during heart attack, for example, my post was removed by the site administrator (due to a ‘rule’ against recruiting for clinical trials).

      Yet just this week, Inspire distributed info to WomenHeart patient group members on behalf of a pharmaceutical company recruiting for a drug trial that it’s funding.

      That’s where the real “conflict and bias” lies here: group members’ posts about independent research are considered inappropriate and thus refused publication, while publicizing research funded by a site’s Big Pharma financial partners’ is allowed.

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  15. Carolyn!!! How thankful I am for this series that illustrates your amazing gift of digging into the realities of on-line support groups and keeping us informed!

    Just like you, in the beginning I was brand new, desperate, naive, & ignorant. I was also frightened, uninformed, and seeking answers that my doctors didn’t seem to have.

    I am so appreciative of the hard work you do that produces these stellar posts!

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