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.
“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.
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).
♥ This is the third of a 3-part series of blog articles on online patient support groups. The other posts in the series are:
- 1. Discover. Join. Leave. The Life Cycle of Online Patient Groups
- 2. Online Patient Groups: Why So Under-Used?