Patients-included Pharma? Disingenuous, and busted.

Patients Included badge with question markProlog by e-Patient Dave:

Patients Included” was created by Lucien Engelen in the Netherlands for his initiative to have patients speak at all medical events. We in the patient community are taking it everywhere we can.

But sometimes – as in this story – someone misuses the concept, acting patient centered but with covert motives. We Do Not Like That. So, with Lucien’s permission, for this story we add a “?” to the badge.

This drives me nuts. The best of pharma saved my life! But time after time the industry sticks itself in the eye with a stupid, unnecessary action that gives the whole industry a bad name, and nobody ever says “HEY, KNOCK IT OFF! You’re making life difficult for your colleagues!”

This guest post, by SPM member Sara Riggare @SaraRiggare, a Parkinson patient in Sweden, tells of another dumb, unnecessary black mark on the industry’s name – and how they got busted. (My term, not Sara’s.) 

I have friends in pharma. Hey, guys: every time you run into a regulatory problem or lack of consumer trust, it’s because of stuff like this! Police yourselves! Set professional standards, and enforce them! How about a CEPM credential – Certified Ethical Pharma Marketer – which you can strip off someone when they do something like this.

Here’s Sara’s post. Note that Sweden has part of what we need, but it still didn’t matter until an e-patient knew about the rules and looked into it.

Being a maybe extremely engaged patient (e-Patient Dave once called me “super-empowered” and it made me very proud), I am a member of a number of organizations, one of which is the Swedish Parkinson Disease Association.

A few weeks before Christmas, I got an email with a survey from them, allegedly wanting to investigate how patients with Parkinson are being cared for in different parts of the country and how long it can take between referrals, investigations and possible change of treatments in healthcare. I started taking the survey, but something about the questions and the listed responses made me wonder. 

I checked the open database maintained by trade association LIF, listing all collaboration projects between pharma and patient organizations. (This is an important self-regulation mechanism that normally works well.)  Aha: this survey was funded up to 249,000 Swedish crowns (SEK) (US$38,000) by pharma company X. There are rules on openness and transparency for this type of collaboration – but nowhere in the survey was the funder mentioned.

As I completed the survey, I went from surprise to astonishment; how can they claim to want to investigate the situation in different parts of the country when there is no question on where you live? And what was the patient organization getting out of this survey?

It turns out that “Pharma company X” supplies Duodopa, one of the three advanced treatments for Parkinson available in Sweden (and one of the treatments mentioned in the study, along with its competition).

Now, don’t get me wrong, I am all for improved treatments for difficult and serious diseases. But they come at a price: in this case 400,000 SEK per year (about US$61,000), compared to my 15 pills a day, which cost the Swedish taxpayers 90% less. (Healthcare and prescription drugs are practically free in Sweden. I pay no more than US$400/year, for everything.)

What really stuck out in the survey was that although it was distributed by the patient organization, and claimed to study treatment variation by region, it didn’t ask where I lived, and didn’t sound like how Parkinson patients think, and didn’t talk about what what we actually do. It focused solely on three advanced treatments, and completely lacked any questions about what people do most: oral medications, selfcare aspects, patient activation/empowerment or the benefits of physical activity.

It felt almost as if the survey had been designed to make the respondents start asking their physicians for the advanced treatments as soon as possible.

What do you think of these questions (translated from Swedish):

Have you heard of the following treatments?

  • Infusion treatment with Apomorphine pump
  • Infusion treatment with Duodopa pump
  • DBS/brain surgery

What kind of treatment are you receiving?

  •  Infusion treatment with Apomorphine pump
  • Infusion treatment with Duodopa pump
  • DBS/brain surgery
  • None of the above

How satisfied are you with your current medication?

  • Very satisfied
  • Satisfied
  • Neutral
  • Dissatisfied
  • Very dissatisfied

What is your view on being investigated for any of these treatments?

  • Interested but have not raised it with my physician
  • Interested but have been refused by my physician
  • Not interested
  • Do not need them

My concern about this survey made me contact LIF and I was advised to send in any information I had to their “compliance officer”. He chose to refer the complaint to “The Swedish Pharmaceutical Industry Information Examiner” (IGM), a scientifically qualified doctor, working independently to examine information and other marketing activities for pharmaceuticals from the industry.

A few weeks ago there was an article in the medical newspaper in Sweden reporting the decision of the IGM in this matter ( In Swedish). IGM found the company guilty of serious misconduct on two accounts; neglecting to clearly inform who was funding the survey and “attempting to induce a demand for a specific treatment from the patients”.

IGM also writes: “The choice of treatment is not usually done by answering questions from the patient organization, but is a matter to be discussed by the treating neurologist together with the patient.” LIF charged pharma company X 140 000 SEK (about US$21,000) for the incident.

What can we as e-patients learn from this?

Well, I must say that I am happy to see that the system for pharma self-regulation seems to work satisfactorily in Sweden. Also, that we have to be aware that pharma first and foremost are working for their shareholders and not for patients. And that does not have to be a bad thing, to be able to develop new effective drugs, of course they need lots of money.

But they also have to comply with the rules that apply in the specific country in question when interacting with patients. And in my view, we as e-patients have a responsibility to do our best to bring out the patient perspective everywhere we go, but it needs to be the well-informed patient perspective for us to be included as an equal stakeholder in the discussions. We just have to acknowledge that pharma cannot be patient-centered if the don’t involve patients FOR REAL!

Sara Riggare is an engineer by training who experienced her first symptoms of Parkinson’s disease around 1984, at age 13 but wasn’t diagnosed until nearly 20 years later, in 2003. In 2010 she decided that she wanted to combine her patient experiences with her engineering skills to try to improve things for herself and others with chronic diseases so she started studying at a masters program in health informatics at the Karolinska Institutet in Stockholm, Sweden. Since March 2012, Sara is a doctoral student at Karolinska and the topic of her research is “Personal observations as a tool for improvement in chronic disease”. She has a blog: ”Sara – Not patient but im-patient” at


Posted in: policy issues




11 Responses to “Patients-included Pharma? Disingenuous, and busted.”

  1. Excellent post, Sara – and yet another reminder to all patients to read the fine print (if it even exists) and to always trust that niggling little gut feeling that something smells fishy. Good work following up on that niggle.

    To fulfil their corporate responsibilities to their shareholders, drug and medical device companies use whatever means they can get away with to increase sales including but not limited to exploiting patients to do so. You’ll find them running patient support communities, funding continuing medical “education” about their products, or paying illegal kickbacks to doctors/hospitals (even though such payments cost the industry billions in criminal fraud fines each year). I wrote about this in “Has Industry Co-Opted Patient Engagement?”

    The ‘Pharma Company X’ survey that you describe here is merely a clever way to sidestep laws banning “Ask your doctor” Direct-To-Consumer drug ads (legal in only two countries – the U.S. and New Zealand).

    Clever marketing ploy – but slimy nonetheless.

    • Carolyn, I want to be clear that while this was a foolish move on the company’s part, I personally know there are lots of good people in the industry. I encourage them to stomp the fools who keep giving the industry a bad reputation … those people DEPEND on never being smacked by their colleagues.

      • Dave, I’m not saying that are not “good people” in Pharma (as can be correctly claimed for any industry). But I’m not making this stuff up: the drug/medical device industries are indeed engaged in what’s now called “marketing-based medicine” and the evidence for this is simply overwhelming. Sara’s survey is but one tiny example of such marketing strategies – these include selective outcome reporting, tainted medical research, medical ghostwriting, publication bias, deliberately hiding negative trial results, data mining – the list is truly endless.

        If this industry hasn’t learned from paying multi-billion dollar criminal fraud fines for illegal kickbacks and worse, then it’s naive to assume that being “stomped” by their nice colleagues is going to put even the smallest dent in their reality.

        This isn’t the work of a tiny group of “fools. It’s simply how business is done.

    • Sara Riggare says:

      Thank you Carolyn, I was actually a bit surprised that the IGM (“Industry Information Examiner”) saw the event as serious, because I will confess to have been a bit worried that I would be dismissed as just another troublemaking patient. I am glad that I still went through with it.

    • Sara Riggare says:

      I just heard that the patient association in question will use the results from this survey as planned and have not made any mention of this incident in any communication to the members… Money talks…

      • Thanks for that update, Sara. So discouraging…

        What? WHAT?!?!? Even after “IGM found the company guilty of serious misconduct on two accounts; neglecting to clearly inform who was funding the survey and “attempting to induce a demand for a specific treatment from the patients” – the patient association is going ahead with the survey results as if none of your objections or the IGM findings even happened?!?!?

        PS There you go, Dave – yet another compelling example of, as Sara correctly observes, “money talks”.

        • e-Patient Dave says:

          I’m going to say something very carefully, with a hundred “Do Not Leap To Conclusions And Overgeneralize” cautions, because what I’m going to say is simple but important to understand but DOES NOT MEAN MONEY ALWAYS BRINGS CORRUPTION OR UNDUE INFLUENCE.

          Having said that:

          I have observed, and many have told me, that once an organization has bills to pay (rent, salaries, etc), it necessarily puts them in a position of needing to fund those expenses. In SOME CASES that can lead the top priority to be “Pay the bills.”

          There are various ways to pay the bills. A classic extreme example, often decried by breast cancer patients, is the Susan G. Komen foundation, who, activated patients often say, is MOSTLY about *promoting* the disease (and thus raising money for itself), and is driven far too little by what patients want.

          I have no way of knowing whether that’s at all a factor in this case.

          People have different views about this. In the board and executive committee discussions of our own Society for Participatory Medicine (whose volunteers produce this blog) it’s often been said by some officers “No money, no mission,” meaning until we get funding we can’t run programs. I personally disagree vehemently with that – my view expressed on those calls is “No PASSION, no mission,” and I’ve been out trying to stir things up for years without any funding from SPM etc.

          Anyway, you and I have no way of knowing what was in the minds of the people who made those decisions after that study. It seems to me that the only remedy immediately available is to spread the word as best we can – through social media and conventional media if they’re interested.

          I would welcome a blog post or publishable email from the people in the organization who decided to do this even after the judgment was handed down.

  2. FWIW, I invite you to listen to this interview conducted by Paul Tunnah (@pharmaphorum)back in 2012, during with I talk about many of these issues.

    Toward the end I talk about problems with demonizing Big Pharma but also suggest how industry leaders might engage with epatients with more integrity.

    And here we are, nearly two years later and the same issues persist. So much work to be done!

    • Meredith, thanks for posting a link to your interview with Paul. Great stuff and well worth a listen!

      Loved your observation: “The more pain I’m in, the more I’m going to be cracking jokes” which I’ve observed may be more common that others realize. It reminded me of a recent review about the women’s heart health presentations that I do: “part cardiology bootcamp – and part stand-up comedy”.

      Maybe we laugh because if we didn’t, we’d be crying . . .

      • Decades before my own cancer (and the ensuing book Laugh, Sing, and Eat Like a Pig), when I was involved in a very difficult family medical crisis, even in the worst of it we’d crack jokes and say “Ya gotta have a sense of humor.” No question about it.

        And why not?? If jokes arise from all other aspects of life, why not here too? It’s a sign that you’re dealing with it.

        I don’t know if Oscar WIlde actually said, on his deathbed, “Either this wallpaper goes, or I do,” but I sure hope I can come up with something that nifty on the way out. :)

    • OMG Meredith! I just now listened, for the first time, to your phenomenal PharmaForum interview (in your comment above). Gonna blog it!

      Is there a transcript, to make it searchable?

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