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Category: Social Media in Medicine

Dream and Nightmare of Web-Scale Pharmacovigilance

I’m not going to tap into fear-mongering of why Microsoft is involved in the study that pulls adverse event (side effect) data from the internet, but I’m wondering what’s taken people so long to figure out the vast pool of patient experiences available online. Oh wait, those of us involved in industry know about this, only we don’t want to know about it.

There is at least one valid reason: you need to have a full picture of what is involved behind a side effect, to say with some level of confidence that your reported side effect experience came from the drug you said you took, not the other drugs you’re conveniently not saying you’re taking (especially the not-so-legal kind), or that you have a drinking habit (alcohol has major interactions with every drug under the sun), or that you’re taking 20 supplements you got from the nutritional store, and some prescription med you got off the internet by some shady doctor who asked you a few questions before writing you the Rx…

But reality check. Web-scale pharmacovigilance is here, and needs to be here, and should be leveraged conscientiously and systematically.

2013-03-10 09.16 AM74

Some years ago I gave a talk at a DTC conference in New Jersey about the patients’ voice when it comes to safety information. I am not in the business of web-based pharmacovigilance, nor did I set out to collect this information, but patients started sharing their personal experiences with an antidepressant on my mental health website. Yes, there are paroxetine/Paxil-related reports, but for the most part patients talk about bupropion/Wellbutrin, and over the span of many years there are hundreds of patient reports that are consistent in terms of their side effect experience.

This all started with one reader asking a question about a particular side effect of bupropion, and whether there were any published studies about a particular side effect. I’m sure there are scores of data from the manufacturer, but like much of drug data, these are kept “proprietary” with the ever-present “data on file” label on clinical slide presentations that the manufacturer supplies to a well-selected public (doctors).

Industry shouldn’t fear it or revile it: pharmacovigilance is critical for gathering drug information over time as part of safety monitoring, and the FDA sucks at making this an easy task for anyone with the desire to report adverse events with bureaucracy.

Read NYT’s take on web-scale adverse event reporting and drug safety monitoring.

Patient Hot Buttons in Pharma — Series with Casey Quinlan

Introduction: I met Casey Quinlan in October 2011 when we both presented at a Digital Pharma industry conference hosted by DTC Perspectives. Casey describes herself as a “rabble rouser”, and of course, I cannot resist. This is a series of conversations with Casey on various “Patient Hot Buttons in Pharma” that we will be relay-blogging.

Casey

Jane

Segments of this Series:

Absurd Advertising

Lack of Transparency

Behind the scenes manipulation we sense but can’t see

Lack of Presence

Cost

Pharma Companies that Can’t Handle Comments Should Get Off Facebook, Good Riddance!

Jonathan at Dose of Digital talks about pharma’s fear of Facebook pages centering around 2 issues that pharma thinks require 24/7 monitoring: Adverse Events and negative publicity.

I hear the same excuse on why pharma companies are so scared to look at patient comments on blogs: adverse events.

I’m sorry, but adverse events are happening whether pharma companies are monitoring or not, and this is different from monitoring whether someone’s posting something “bad” about your company (newsflash: not everyone’s going to like you, better to expect it and have rules to address it than bury your head in the sand).


Adverse events are crucial for patient adherence and avoiding Facebook comments for fear of posts on AE is a missed opportunity for pharma to engage with patients in an issue that they all care about.

Patients expect drugs to work — rarely will patients want to get on a pharma page to thank the company for making a product that works. You may have a cancer patient who will do this if the company has gone above and beyond the call of duty to help the patient gain access to the drug that the patient otherwise cannot afford. But for the most part, patients have a “love-hate” relationship with pharma companies that is more “hate” than “love”, and I can’t blame patients for feeling this way.

What patients gripe about, and fear, and dread, are the adverse events.

Adverse events chip away a patient’s hope of getting better.

Adverse events erode a patient’s quality of life.

Adverse events make patients wonder, “would I rather stay ill, or deal with this horrible side effect?”

Then they look at companies avoiding discussion about something that is so key to their treatment experience, they naturally assume “profits before patients”. Never mind the realities of bureaucracy in adverse event reporting, I know it’s a bitch… the FDA knows it too.

That’s how pharma companies come across in their being so scared about Facebook.

Funny… I rarely recall pharma companies coming across scared when some of their sales and marketing teams find creative ways to fly under the radar to promote off-label. Somehow these companies are fine with breaking the law to “expand” usage of their drugs, but now they’re claiming they can’t deal with lack of guidance where Facebook pages are concerned.

Better companies pull their pages off Facebook if they are hard-headed about not allowing comments. Leave those who are more enlightened to get those patients’ eyeballs and possibly gain some goodwill.

Companies who want to control the message and behave hypocritically are doing the right thing by leaving Facebook: they aren’t adding value on the social network anyway.

Pharma and Social Media: It’s Not About Controlling the Conversation, but Finding the Right Venues for Engagement

Now that Facebook Pages is to Marketing what LinkedIn Profiles is to Job Seeking – pharma companies are in pickle: Facebook is going to open up comments no matter what.

This means pharma companies can no longer restrict people from commenting on their Facebook pages.

Er…. DUH! Why is this big news? People get on Facebook to socialize – and not just to socialize – but to socialize in a mildly (or very) uninhibited manner. Facebook is MySpace done artfully and profitably, where we aren’t subjected to blinking starry page backgrounds or annoying music on auto-loop.

But remember why Facebook was created, and why Facebook has taken off with businesses – it is because when people are less inhibited, they are more suggestive, and more likely to click on links that businesses want them to click to buy stuff!

If businesses want stuffy and formal – there’s already a Facebook for that – it’s called LinkedIn.

I realize that it makes good sense for pharma to get its brands and company names out there. The problem is that when the public engages pharma, if they don’t ask about products, what would they want to engage pharma about?

[Assuming they aren’t interested in engaging pharma companies to ask, “why are you charging such high prices for drugs I need to save my life?”]

It’s akin to expecting a customer who drives a Toyota Corolla here in the U.S. not to engage the company Toyota to ask about the Corolla he drives. Unless that customer happens to work in an area that involves some business process, thereby predisposing the customer to want to ask about how Toyota “the company” works, customers often equate the company with the brands they use.

I understand that pharma industry supporters, including myself, would love if pharma can once again establish credibility with consumers by focusing on their support of disease state research and advancement.

Only another party’s already settled in that domain: they’re called physicians.

Physicians are typically seen as providers of support to patients in disease areas, from the consumer perspective. Let’s say I experience the symptoms of clinical depression – I’d naturally think, “I need to seek info from the doctors (once I learn more about this on the web)”.

I am not thinking, “I wonder what information GSK or Pfizer is providing in treating depression.” I’m not even thinking, “I wonder how Forest Laboratories or AstraZeneca are supporting R&D in depression relapse.”

But I may think in drug names, like, “I wonder if I should ask my doctor about Abilify, or Zoloft.”

[note: this would be an off-label use of Abilify, since Abilify is not approved for first-line use in treating depression, only as an adjunct to a first-line treatment if that treatment isn’t working as well as it should; it’s like a “boost”. But I use Abilify because I’ve been seeing so many ads on TV for it, and I honestly haven’t seen that Zoloft bouncy little ball in ages on TV.]

Thus there is first a cognitive hurdle that will not be easily passed. It is that diploma on the wall that garners the physician ‘credibility’, just as it is the commercial/business status that garners the pharma industry ‘lack of credibility’ when it comes to its participation as providers of information on the disease state, no matter how objective pharma tries to be.

In fact, even a recent survey of U.S. physicians had shown that they don’t want to pay for their own CMEs, yet they also won’t trust the CME content that is supported by pharma thereby making CME affordable (“free”) for them!

Logistically, the speed of Facebook and Twitter is exactly why Pharma should must hesitate.

People don’t go on FB/TW expecting a support-ticket time-frame (“slow”) response. They are on these platforms for just in time/immediate responses (“fast” “NOW!”). Otherwise, why bother? There are already online forums or patient info phone numbers for support-ticket speed “communication”.

It is not just about the platform, but the patient expectation that comes with the platform.

If you had ever engaged in a hashtag-driven Twitter chat, then you’d know how it’s next to impossible to follow every single conversation that comes at you in firehose fashion. Imagine then if there’s one or two patient complaints or problems amid the 20 other divergent discussions.

That’s what trying to retain “form” around a topical discussion may look like when Facebook comments are opened up for pharma.

[Lest any of us had forgotten – remember the “Motrin Mom” event, where a twitter indignation went viral and before the end of the weekend, the U.S. VP of Marketing at McNeil had to take that YouTube ad down? Try controlling THAT hashtag outbreak; I was there and saw how quickly it amplified.]

I’m 100% for increasing dialog between industry and consumers/public. Yet I think we can’t equate social media platforms the same, just as we can’t equate popular venues the same for medical education.

There are some social media platforms that are akin to a quiet, business like conference room.

Then there are social media platforms where people go for happy hour and unwind and engage in more personal conversations than business.

Then there are social media platforms where people go in expecting a brawl and in fact that’s why they showed up in the first place.

Pharma needs to identify these types of platforms and, rather than forcing or imposing artificial constraints by making everyone show up to a bar in a business suit.

The question Pharma needs to ask is, “is the purpose we intend to serve by showing up here feasibly achievable by the expectations of the crowd who will also show up?”

FDA Has to Slow Down to Keep Up with Drug Companies

Steve Woodruff is hopping mad with the apparent gross inefficiency and indecision of the “guidance process” for pharma company promotional practices when it comes to social media, and I can’t blame him!

But I’m on the FDA’s side this time.

Let me say up front that I never liked how the FDA remains vague and slow in the past, it sucked when I was a pharma employee trying to figure out just what the FDA “wants”, but the FDA had long acted like a tripped out lover who has something in mind but we’re supposed to guess or better yet – read his mind.

But today I am much more forgiving of the FDA than I am of pharma company management.

I was looking at a recent run down of 2010′s lawsuits settled by drug companies and to say that I’m disappointed with industry’s continual hypocrisy is a gross understatement.

It’s one thing when you can say that you’re working toward implementation of compliance practices. It’s another when you take one step forward and 3 steps back as an industry in something as “common sense” as “don’t mislead the public” (in every which way that can be done via old media/new media).

For so many years whether as employee or consultant, I have heard company management say “Patients are our #1 concern! People are our greatest asset! We want to do the right thing!” in public forums and company meetings. Then I look at the actions that are motivated by incentives and hidden rules at companies.

I’m not surprised why the government keeps ramping up its prosecution arm. I get that pharma changes are slow, but this looks almost as if pharma wants to test how slow it can change.

I’m not surprised the FDA has to “slow down to keep up”.

I have read some of the recent untitled warning letters sent to pharmacos, and the violative actions from pharmacos. HAVE YOU READ THESE? Look at the list growing from year to year. And how the SAME CITATIONS KEEP COMING UP, AGAIN AND AGAIN.

If I had to cull through the sheer amount of garbage that pharmacos continue to churn out as sales aid, my resources would come up short as well.

It’s like, pharma companies can’t learn!

It makes me want to say, “come on pharmaco people, you guys come armed with MBAs and doctorate degrees, you have teams of lawyers…. SERIOUSLY? THIS TYPE OF VIOLATION – STILL?”

Or more accurately, maybe they just don’t want to learn.

Maybe it’s still a game to see how much money you can make when you push the envelope and offset the profits with FDA imposed penalties and fines.

Even when you slapped with a huge lawsuit costing you hundreds of millions of dollars, well you can act like this is the stock market and say if you earned more revenue than lose it as a liability of “market fluctuation or market conditions” you’ll still come out on top.

Meanwhile, patients lose, healthcare loses, and pharma employees who actually want to do the right thing when earning their keep lose.

Big Pharma Shilling and WebMD.com MayoClinic.com Smack-Down

New York Times Online is likening WebMD’s “information” as “using the meretricious voice of a pharmaceutical rep”.

I don’t know… I never found WebMD’s interface “apparently attractive” but I suppose some people like all the flashy stuff. I mean, I find the ads on NakedMedicine.com mildly annoying, but these only go toward keeping the site alive and paying for the internet connection. If I had to start paying staff writers and “physician experts”, I can see how I may need to squeeze ads onto every available white space on a website.

The few times when I did look at WebMD there are so many different ads for so many different things (often unrelated to the topic on the page) that it’s no wonder WebMD brings in over $500M revenues a year. The only time I recall seeing an ad-free page on WebMD is on their “CME” topics… and I do wonder who is paying for those (and for how much!) to keep those pages ad-free. Someone’s paying for these.

But I personally like MayoClinic.com if only for the ease of getting at the information I was looking for without having to block a gazillion ads.

I think Ms. Heffernan is seeing more of the truth in the relationships between the members of the American Medical Association and the drug industry through what she sees on WebMD.com . Maybe in the doctors’ offices we get to see a sprinkling of drug “detail pieces” and miss the piles that are thrown away or hidden (I’ve always wondered why drug companies don’t just stop leaving these behind because they’re the biggest waste of trees). The real goodies are often hidden away – in the form of shadowy monetary compensation that the feds have caught up on.

After all, when you get a world famous oncologist bragging about how many thousands of dollars he can get drug companies to pay him “per patient” in a clinical study, what’s a drug company to do?

Top 10 healthcare social media predictions

3 of my predictions appeared here:

Industry consultant and entrepreneur Jane Chin (@janechin) goes even further, alleging that next year PhRMA will appoint its first ever ‘Chief Tweeting Officer.’

Jane Chin (@janechin) thinks social media will spur new approaches to customer care and technology, as cutting edge pharma …companies will experiment with a blend of continuing medical education and cloud-based user-generated content for CME 2.0.

Jane Chin (@janechin) emphasizes sound strategic judgment and an eye on the needs of a targeted audience for specific, relevant content by warning that pharma will realize, once again too late, that data dumping fails both in real life and in social media. [Thanks @skypen!]

Pharma Industry’s Job is NOT Disease Prevention. THAT’S YOUR JOB.

I’ve heard the argument, so have you.

“Those evil pharma companies aren’t interested in prevention! They want people to get sick and stay sick because that’s how they make their money! On the drugs!”

Recently I had railed against the pharma companies that are capitalizing on increasing trends of people using certain prescription drugs as “lifestyle drugs” – not to mention appearing on the Wall Street Journal this past Friday to rail against pharma companies that abuse the role of medical science liaisons, so I have my own pet peeves and criticisms with pharma. What irks me is when a criticism about any industry is not based on a fundamental flaw in that industry, but is simply born of politicking sensationalizing this-is-how-I-get-more-readers/viewers tactic.

Most of these people have taken a basic science class at some point in their lives and learned about a phenomenon called “entropy”. How things in a system tend to go toward disorder, and to halt this “natural” occurrence from occurring, you have to add in a great deal of energy, and even that won’t ultimately stop the inevitable.

Kind of like the idea of life and death, which is relevant to the assessment of this dimension of our hostility towards the pharmaceutical industry.

Obviously, pharma companies want you to stay alive, preferably as long as possible. This is not so they can capitalize on you dying (a dead person is no longer a customer)! The pharmaceutical industry is a business that capitalizes on your DESIRE to PROLONG YOUR LIFE AND MINIMIZE PHYSICAL PAIN AND SUFFERING. If you aren’t interested in prolonging life and minimizing physical pain and suffering, the pharma industry ain’t gonna benefit from YOU since you’re not a customer to begin with!

Let’s say you are sick from complications of heart disease.

Pharma companies that are in the heart disease business is not responsible for PREVENTING YOU from getting heart disease. YOU ARE RESPONSIBLE for making sure you do what you’re supposed to do to reduce your risk of getting heart disease, unless somehow you have signed the claim to your physical existence over to another person who is legally responsible for your physical survival and health.

Your family doctor may have a responsibility to educate you on mitigating the risks of getting heart disease, so those who want to rant about prevention may want to point their antennae to the medical profession, but ultimately YOU are STILL RESPONSIBLE for the behaviors and actions YOU TAKE that lead to the result of heart disease or no-heart disease. Your doctors can be the best doctors they can be and even give you a diet and exercise regimen that will lower your cholesterol, reduce your blood pressure, and take down your diabetes risk factors a few notches – but if you DON’T DO WHAT YOU’RE SUPPOSED TO, then you will end up with the health consequences. Actually, this is EXACTLY what happens in many obesity and heart disease cases today. Doctors themselves will admit that many of their patients won’t heed their advice, and most will lack the discipline required to stick with a rigorous healthy lifestyle to make a lifesaving change.

Are we saying that it’s the pharma industry’s job to PREVENT us from assuming behaviors that will put our health at risk? If there’s a pill for stopping us from risky behaviors, and pharma makes it commercially available, then we’ll simply turn around and say “now pharma wants to control our thoughts and actions!” (I think we already have those kind of pills, and there are activists and lawyers jumping on that bandwagon.)

Seriously, if you take care of your body, do everything healthy like you’re inundated by all media outlets to do (don’t drink, don’t smoke, don’t go out in the sun without wearing sunscreen, eat more fruits and vegetables, exercise at least 30 minutes a day, etc…), then you’re probably not going to need all those pharmaceuticals until the inevitable process of aging occurs, where your cells can’t care less what you’ve done because they’re all getting old and breaking down as a natural part of the decline of “life” in your physical human existence.

Female Sexual Dysfunction: Pharma’s Next Lifestyle Market

I’m posting this from one of Steve Woodruff’s blog posts that I shared via my Facebook profile, which turned into a full blown debate between me, Dmitriy Kruglyak, and Yvette – one of my FB friends.

Jane Chin
I’m pro-pharma, but I’m NOT happy w/ female sexual dysfunction disease mongering I expect to see from pharmacos! http://ow.ly/4xQH

Dmitriy Kruglyak at 8:18am April 30
Where do you draw the line between “disease mongering” and “disease awareness”?

Jane Chin at 8:21am April 30
When the ‘awareness” generated makes patients who otherwise are not candidates for the drug pressure docs to write the Rx.

Dmitriy Kruglyak at 8:23am April 30
Ah, but who gets to decide “who are the candidates” and what qualifies as “pressure”? Especially if we are talking DTC, rather than Rx. Are there hard and fast rules?

Jane Chin at 8:25am April 30
that’s why I don’t think DTC is responsible for niche diseases. Pressure=if you don’t write it, I’ll go to another doctor who will.

Dmitriy Kruglyak at 8:27am April 30
Hmmm, seems to me “if you don’t write it, I’ll go to another doctor who will” can come from any kind of patient empowerment, not just driven by Rx advertising.

Jane Chin at 8:28am April 30
Yes it can, but true patient empowerment IS NOT “take this pill, fix your problem” when the problem is not always solved by “a” pill.

Dmitriy Kruglyak at 8:47am April 30
Patients just want to do what they want to do. People have, are and will always look for quick fixes. That’s human nature.

Jane Chin at 8:51am April 30
I know this is human nature, and one capitalized by advertising. But where health and human life are concerned, the ethical standards should be higher.

Dmitriy Kruglyak at 8:53am April 30
Seems to me advertising is simply fulfilling demand

Jane Chin at 9:02am April 30
No, advertising is meant to CREATE demand. Even better when advertising increases the market from perception-based v. needs-based demand. (more…)

How to See Through Pharma Ad BS?

Like all marketing campaigns, the aim of any pharma advertisement is to get you to think that you need a certain product or a service. I understand that all pharma companies will say that they want to educate patients on the condition first and foremost, but I guarantee that when pharma companies are forking over multimillion dollar checks to ad agencies, they’re looking for more product sales as a return on investment (ROI).

This is not a “bad” thing – this is business. Let’s say you’re an inventor and you created a program that would improve the amount of sassing teenagers give to their parents. Would you pay an agency half of your annual paycheck so that parents can be educated about the prevalence of sassing by teenagers? NO! You want parents to buy your program so you can make back at least the money you spent on the ad, plus more so you can pay your mortgage and keep your family fed!

Well, pharma’s like that. I know for some it is incredible to believe, but pharma companies are not alive in themselves, as if there is a force called “the pharma company” making decisions. Pharma companies are made up of hundreds of thousands of people who have to feed themselves and their families and put a roof over their heads. (Many of them are parents and most of them probably wish that you did invent a program that improves teen sassing of parents.)

So the key is not to spend your energy hating companies and talking trash about how misleading some commercials are or how annoying you find that a computer graphic bee is selling you asthma medication or how a group of red-towel clad women looking like they think they’re better than you want to sell you a hormone replacement drug.

As consumers, the key is to see through BS!

And the best way to see through any “BS” – whether it is from pharma or any other industry – is to know the difference between:

– what you NEED

– what you WANT

– what you are led to THINK you NEED

This last item – what you are led to think you need – is the crux of how ads work. Ads lead you think you need something, and usually tap into our animal instincts, or tap into our more “evolved” desires like convenience.

Example:

– buy this car and you’ll attract sexy partners (taps into animal instinct)

– take this pill (taps into convenience in some cases where diet, exercise, life style change is much harder)

Therefore, a question consumers can ask themselves whenever they are confronted with an agent of influence is,

“Is this what I REALLY need? Or is this what I want? Or is this what I am tempted to think I need?”

You can apply these questions to 99% of the junk ads you see on television these days, aside from pharma ads.

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