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Has the health industry co-opted patient engagement?

Has the health industry co-opted patient engagement?

Picture of Carolyn Thomas

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:*

“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 what 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 the Linked In site 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?

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 in 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 PatientsLikeMe, a popular, for-profit, online patient community. PatientsLikeMe 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 research 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 social media pages (DiscussDiabetes from drug giant Sanofi Aventis has 4,000 Facebook fans and 4,000 Twitter followers, and diabetes juggernaut Novo Nordisk sponsors IndyCar driver Charlie Kimball in exchange for his Tweets@racewithinsulin – including when he injects with their products.

Trouble is, the FDA has not yet written the rules about how pharmaceuticals are allowed to engage with potential customers and patients on these industry-sponsored sites.

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 revenue costs the global pharmaceutical industry an estimated $30 billion per year.

So the 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:**

 “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.” 

This same paper advised on just how drug companies can combat this non-compliance. For example, patient compliance program approaches that have been successfully tried (each of which sounds like patient engagement strategy) are:

  • patient education
  • cost-related approaches
  • direct-to-consumer advertising
  • packaging
  • delivery options and dosing regimens
  • call-center support
  • Short Messaging Services (SMS)

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. 

Now consider the marketing practice of astroturfing, best exemplified, I believe, by a company called Lifestyle Lift that ordered its employees 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  – oops, too late! - I have to sadly wonder if there are any last bastions of genuine safety and trust out there for patients who sincerely want to be actively involved in untainted health care practice.

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

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

Carolyn Thomas writes The Ethical Nag; Marketing Ethics for the Easily Swayed blog.

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Photo credit: Liz West via Flickr


Picture of

Thanks so much Barbara for cross-posting my article here for your readers. Loved the image you chose, by the way! Where did you find that? :-)


Picture of Barbara Feder Ostrov

Hi, Carolyn, thanks again for the great post! Here's the link to the image, which I found on Flickr:   It's striking, isn't it?



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