Here at Ethical Nag World Headquarters, I just figured out that it’s entirely possible I might have the concept of patient engagement all wrong.  Until recently, I accepted this basic definition, courtesy of the Center for Advancing Health:(1)

“Patient engagement: actions individuals must take to obtain the greatest benefit from the health care services available to them.”

Sounds good, right? As a heart attack survivor with ongoing cardiac issues, I really liked the idea that a whole bunch of us seem keenly interested in doing whatever it takes to obtain the greatest benefit from our health care services. In fact, many folks far above my pay grade maintain that engaged patients may just represent the future game changers of health care. Health IT strategy consultant Leonard Kish, for example, wrote in August that if patient engagement were a drug, it would be “the blockbuster drug of the century – and malpractice not to use it.”

So I was pleasantly surprised when I was noodling around on Linked In one day and noticed that they have a few member groups discussing patient engagement there, too.

Hey! I consider myself an engaged patient – maybe I should drop in on one of these groups and see what other engaged patients are up to?  Contemplating issues like doctor-patient communication, improved health outcomes and shared decision-making, likely.

It was only then that I found out: these groups don’t have patients in them.

What they do seem to have: corporate suits talking to other suits (and more importantly, to potential clients) about their companies’ role in taking financial advantage of this whole engaged patient movement. Consider some of the online statements from member companies in Linked In’s Patient Engagement groups:

• “(Our company) helps your hospital reach patients at the right time!  By connecting your hospital directly with appointment-ready patients who are actively searching for a provider, you can reach patients right before they select a doctor or hospital.”

• “(Our company website) visitors are internet-enabled, commercially insured, profitable to hospitals and ready to take action once they’ve found information on our site:
  • 73% have commercial insurance!
  • 95% of those who make an appointment do so within a week!
  • 38% of those who make an appointment do so on the same day!”

• “Designed to showcase your physicians and highlight clinical achievements, our solution connects you with patients who are looking for a health care provider within your community.
  • Reach Patients at the Right Time!
  • Increase Market Share in Your Local Community!
  • Connect to Patients about Health Needs!
  • Build Your Brand!”

Well, you get my drift. These companies are basically data mining, sniffing out those they hope might be most beneficial in supporting what’s really important here – their bottom line – by cashing in on engaged patients’ online search activities in order to drive new traffic through the doors of their companies’ provider-clients. Brilliant!

According to the U.K.-based Centre for Patient Leadership, the biggest asset health care has – the very people who live with health problems and use services – remains largely untapped.

“Instead, patients are a problem to be solved. Meanwhile, patient engagement has been co-opted by institutional interests as a buffer against change, rather than as a co-production engine for it.

“Despite the rhetoric of ‘nothing about me without me’, organisational approaches to involve people seldom move beyond tokenistic consultations, questionnaires, one-off projects or overly-bureaucratic structures with a seat for a lay representative. The engagement industry may gather data about patient views but seldom uses it to inform decisions.

“At the decision-making table, the role of the patient representative is not clear and there are too few training opportunities. Lazy organisations get a few representatives to cover a dozen different committees so they can tick the patient engagement box.”

Online patient discussion forums may not be the noble grassroots support groups that I once believed them to be, either.

Consider for example the site called Patients Like Me, a popular, for-profit, online patient community. Patients Like Me makes its money by selling health data gathered from its patient member profiles (with certain identifying information removed) to their “partners” (providers of drugs, devices, equipment, insurance, medical services) for scientific or marketing purposes.

The issue 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.”

In some unbranded “disease awareness” online communities, drug companies may pay people to moderate patient forums or pay celebrities to give testimonials, but might not prominently display that kind of financial relationship to patient/participants.

Other websites collect consumer health data to help companies target marketing to specific kinds of consumers.

And because many patient forums don’t have unbiased physician moderation, they may also be vulnerable to influence from corporate partners, drug company marketers, or those pushing unproven therapies. We’re already seeing this in industry-sponsored sites including:

• TheDx diabetes site from drug giant Sanofi-Aventis has over 7,000 Facebook fans and 7,000 Twitter follower

• diabetes juggernaut Novo Nordisk sponsors IndyCar driver Charlie Kimball in exchange for his Tweets – @racewithinsulin – including whenever he injects with their products

• Johnson & Johnson financed The Fatigue Coalition – a patient-advocacy group that promotes off-label (unapproved) uses of the J&J drug Procrit to treat fatigue in cancer patients, despite studies(2) concluding: “These agents  are effective in the management of cancer-related fatigue but also raise serious concerns about safety data and adverse outcomes associated with these agents. The review concludes that these agents SHOULD NOT BE USED for the treatment of fatigue in patients with cancer.”

• Mark R. Westlock, a former Pfizer drug rep from 1991-2007, revealed (in the ultimately successful whistleblower lawsuit that resulted in record-breaking $3.2 billion criminal fines) that the world’s biggest drug company had funded the advocacy group, National Alliance on Mental Health, “in order to turn the non-profit 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 doubled to 4.4 million between 2003 and 2006.(3) 

• The new startup site MyHeartDiseaseTeam (inaccurately described on its site as“…the only social network where you can truly connect, make real friendships, and share daily ups and downs in a judgment-free place” which is of course untrue – there are many such online sites). The site does warn potential members: “On occasion, we will partner with a pharmaceutical company if we believe it will benefit our members”, begging the question for heart patients: how do their financial relationships with Big Pharma or other industry partners benefit anybody but themselves?

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UPDATE February 10, 2016:  Journalism watchdogs at Health News Review report that the pharmaceutical industry is now turning to an old tried-and-true ploy: the fake or “Astroturf” patient-advocacy group in order “to improve its reputation with lawmakers as it lobbies against any effort to rein in prescription costs.”  The report specifically looked at one such group, Patients Rising, along with its partner organization Patients Rising Now, co-founded by a California PR guy named Jonathan Wilcox. But Patients Rising’s website provides no indication of who is paying for the group’s considerable activities, as HNR reporter Trudy Lieberman explained:

“Astroturfers gather ordinary citizens from the grassroots to advocate for various causes while in reality shilling for the trade associations, PR firms, corporations, and political organizations that set them up.

“Like most Astroturf groups, its purpose [‘to fight for access to vital therapies and services for patients with life-threatening diseases] seems noble enough and its goals lofty. But in reality, the group’s main goal is to push against the developing meme of unaffordable drugs. And, like other Astroturf groups (such as Even the Score, which in 2015 successfully persuaded federal regulators that not approving the drug flibanserin for the treatment of ‘female hypoactive sexual desire disorder‘ somehow represented gender inequity), Patients Rising does this under the guise of being a grassroots patient organization.”

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Trouble is, the FDA has not yet written the rule about how pharmaceutical companies specifically are allowed to engage with potential customers and patients through these types of industry-sponsored sites and organizations.

In the same New York Times article mentioned above, Jeff Chester, director of the Center for Digital Democracy (a nonprofit group that works to safeguard user privacy) had this warning about online patient engagement communities:

“We are talking about a digital pharma stealth economy that is emerging.

“You don’t know who is being paid to moderate. You don’t know who’s listening in to your conversation. You don’t know what exactly they are focused on and what they are doing with the information.”

Dr. Catherine Dwyer is an associate professor at Pace University who has studied how advertisers market to consumers based on their online behavior. She told the New York Times: 

“I’ve been really, really shocked at the blatant manipulative language that some sites use to describe their corporate services to industry – versus how they describe themselves to consumers.”

Drug companies have a lot to gain by the trend towards patient engagement, but not for the reasons you might think.  A major headache for Big Pharma is the patient who won’t take the drugs that doctors have prescribed. This reality represents a significant financial loss for pharmaceutical companies that have spent millions to get those initial prescriptions into the bathroom medicine cabinets of the world.

For example, about 50% of patients with chronic conditions stop taking their prescribed medications, and one-third of all prescriptions are never filled in the first place. This lost sales opportunity costs the pharmaceutical industry an estimated $30 billion per year.

That often-used number might in fact be a gross underestimation. A new report has found that the U.S. revenue loss is a whopping $188 billion – and extrapolated to the global market, that’s $564 billion in lost revenues worldwide.

So the drug industry worries about how to improve “compliance” (a word that so many of us patients hate) or the slightly less patronizing “adherence”. No wonder drug companies have started launching patient engagement programs to address non-compliance.

And as one 2008 industry trade paper warned:(4)

“Any drug compliance program implemented must be able to provide improved compliance with the brand, as well as improved bottom-line profit for the brand.”

Speaking of drug companies, when Charlotte McKines, a woman with the impressive title of Global Vice President of Marketing Communications and Channel Strategies at Merck, delivered her presentation called “How Digital is Transforming the Pharmaceutical Marketing Model” at an ePharma Summit in New York City last February, she warned her colleagues:

“About 86% of our customers use the web to gather information, but more importantly they use the non-pharmaceutical sites to get information about our products. They really don’t have a lot of trust and value right now in pharmaceutical sites. 

“So we really struggle in life sciences to become a primary trusted source.  We have got to get there because finding the right place and being in the right destination for our customers really does give us the competitive advantage.”

Well, cheer up Big Pharma!

If you can’t get your customers to place “a lot of trust and value” in your own sites, you can always co-opt patient engagement resources to get your marketing messages out there – without us even knowing that you are the messenger.

For example, the website called Script Your Future appears at first blush to be a useful campaign targeted at patients designed simply to “help you take back your future by helping you take your medicine as directed.”  But what visitors who sign the site’s I Will Take My Meds pledge may not know upfront is that the campaign’s funders include drug companies Boehringer Ingelheim Pharmaceuticals, Inc., Astra Zeneca, Eli Lilly, GlaxoSmithKline, Merck, Pfizer, Proctor & Gamble and Sanofi-Aventis. And by signing the pledge (and ticking off the too-small-to-read “I have read. . .” box), you’ve just identified yourself as a patient and handed over your personal contact information to Big Pharma for future marketing campaigns.

Remember that marketing practice I mentioned earlier called astroturfing?  It’s perhaps best exemplified by a company called Lifestyle Lift that ordered its employees in 32 centres to post fake positive reviews online about its $5,000 quickie facelift procedure. Everything was going along just fine with the fake review strategy until New York Attorney General Andrew Cuomo got wind of it and launched an investigation into the practice, resulting in a $300,000 fine.   (See also: Sock Puppetry, Astroturfing, and the Marketing ‘Shill’ Game)

At the risk of seeming cynical  – ooops, too late! – I have to wonder, sadly, if there are any last bastions of genuine safety and trust out there for patients who sincerely want to be actively involved in untainted patient engagement.

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(1) Center for Advancing Health. 2010. White paper: “A New Definition of Patient Engagement: What is Engagement and Why is it Important?”

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

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

(4) Dr. Andree K. Bates. DTC Perspectives. March 2008. “Patient Compliance Programs: How to Ensure They Are Not Doomed to Fail”

• This article was simultaneously published on Reporting On Health today.

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See also:

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Q:  How do you figure out who to trust for online health information?