Archive for healthcare

Jan
31

FDA paranoia – who knew?

Posted by: | Comments (0)

In its rigorous search for food & drug safety, the FDA added searching through the personal emails of agency employees who questioned FDA decisions.

That would be an oops – for both sides of that story.

fda titanic

(c) PBS | Frontline

Here’s the lowdown: on Sunday (Jan. 29, 2012) the Washington Post reported that the FDA was being sued by staffers – scientists and doctors charged with testing medical devices – for harassment and wrongful dismissal as a result of the agency’s surveillance of their personal email accounts. That email surveillance revealed that the FDA staffers were contacting Congressional staff with whistle-blower complaints about FDA approval of devices that the scientists and docs thought were a risk to patients.

Hue and cry! Bad FDA!

Actually, I agree that the snoopy surveilling of personal email accounts is creepy, even wrong.

However, here’s the rub: the FDA staffers were accessing their personal email using computers at work. At the FDA. Within the Federal government IT infrastructure. You know, the people that oversee other stuff like Echelon. And the Pentagon. Gee, FDA guys plotting whistle-blower campaigns on work computers – stupid much?

On the FDA side of the story, we have creepy fascist tactics deployed by an agency that should be all about making sure that no pharmaceutical, no medical device, no food product makes anyone sick. Or worse, dead.

The record there? Not so stellar. Can you say Vioxx?

On the outraged-former-employee side of the story, we have some folks who thought they were veryvery smart (scientists and MDs always think that, trust me), but who played veryvery stupid on the interwebz.

Accessing personal email on a computer that belongs to your employer is pretty dumb if you’re doing or saying anything that casts a shadow on the hand that feeds you. Yes, that means you become the bad dog, and that’s not a great role to play. Because “no-no-bad-dog!” translates to “your ass is fired” in this scenario.

Even if you’re on your own computer, and you’re using your employer’s network or VPN, you have no reasonable expectation of privacy.

It boils down to this: just like anything else on the web, don’t put anything on it/through it unless you’re willing to either have it on page 1, above the fold, of the WaPo or the New York Times. Or your boss’s desktop.

The saddest part of this story is that the FDA really does need a total tear-down. It’s become too obstructionist to what could really improve public health, and too easy-peasy for big-money players who want to make the system work for Citizen Corporate, not Mr./Ms. Every-patient.

This lawsuit could become quite the precedent-setter, if it gets past the lower courts with its plaintiffs intact.

Stay tuned for further developments. I sure will.

That’s my story, and I’m stickin’ to it …

I’ve asked this question frequently over the years, starting in the ’80s, continuing to today … and I’ll keep it up until someone realizes that it’s a failed paradigm.

What we have here, kidz, is what happens when a society decides that socialism is anathema, but doesn’t empower and educate its citizens about how to take responsibility for themselves in ways that will keep them healthy, productive community members.

Business started picking up the tab for healthcare during World War II, when stiff wage controls made it impossible for defense plants to give their employees raises. In place of more money, they started to pay for health insurance – which state and federal government were more than happy to turn into mandated employee benefits over the next 20 years.

What happened then was predictable: three generations have been out of touch with the true cost of  healthcare, and the true cost of their choices about their health. If you’re a good little American consumer, you do whatever your television tells you to do: eat this. Buy that. Otherwise the terrorists win!

Three generations of disconnection from the real costs of our medical care have delivered us an epidemic of obesity – thanks to plentiful empty calories, courtesy of agri-business, and our willingness to beach ourselves on our sofas, in our SUVs, or at our computers, the better to receive more messages about what we should buy and eat.

Health insurance costs have skyrocketed as we’ve become a nation of couch potatoes. Companies are scaling back their employee health benefits as those costs continue to rise, putting more and more people in the un-insured or under-insured bucket.

Here’s a suggestion: sell health insurance like auto, home, and life insurance are sold. Put consumers in charge of shopping for, and purchasing, their own insurance. Let business help their employees, if they choose to do so, as a true benefit rather than a mandate. Help every consumer set up a Health Savings Account for their healthcare expenses. And stop the state-by-state divvy-up that lets health insurers essentially gerrymander the health insurance marketplace.

Put consumers fully in charge of their insurance, and their care. Turn the health insurance market into a car-insurance model. People can buy minimum levels of insurance, and assume the risk of that choice. They can opt out completely, and assume all the risk for their healthcare costs. Make it a true marketplace, rather than the giant mess that we currently call health insurance.

Radical? Perhaps. Necessary? I’d say it’s essential.

Until we’re put in touch with the costs of our healthcare, we won’t be encouraged/empowered to take control of our health. As long as we’re using other people’s money to pay for healthcare, we’re stuck where we are.

Which is a very bad place to be.

That’s my story, and I’m stickin’  to it …

Healthcare providers are waking up and realizing that they need to partner with their patients to get better outcomes for their facilities and practices, and for their patients. As Accountable Care Organizations (ACOs) get more and more press, the healthcare delivery side is the entity being held accountable.

Patients must step up to the bumper on accountability, too.

Two phrases have entered the medical lexicon thanks to the Patient Protection and Affordable Care Act, a/k/a “healthcare reform.” PPACA is not actually healthcare reform, it’s health payment reform, but I digress. The two phrases are “patient-engagement,” and “patient-centeredness.” Doctors are being told that they must engage with patients, and offer care centered on their patients’ needs … but that engagement and centeredness message is not being simultaneously driven toward patients.

Therein lies an opportunity for #fail.

Patients need to take responsibility for their health, their actions, and their care. I’m not saying that we should shut up, sit down, and do what we’re told. What we must do is ask questions, work to understand the answers, and then do what is in our own best interest, health-wise.

That does not include ignoring instructions to cut down on salt or saturated fats. It most certainly does not involve living on drive-thru meals and expecting a prescription to resolve your expanding waistline or blood sugar numbers.

In this month’s HealthLeaders, Joe Cantlupe talks about how doctors are making more robust suggestions to their patients, with the goal of turning medical care into a true partnership between patients and providers.

Healthcare providers need to step up and work with their patients, turning healthcare into a team sport.

Patients MUST step up and take responsibility for their choices as well as a full share of decision-making.

That’s my story, and I’m stickin’ to it …

Comments (0)

I had the opportunity to speak at a digital pharma marketing conference – DTC Perspectives’ Marketing to the Digital Consumer – last week. “DTC” is Direct To Consumer, by the way. I was representing the patient voice, at the invitation of my friends at the health activist community WEGO Health.

It was terrific for several reasons – connecting with other healthcare social media peeps in pharma, meeting and mingling with some powerful voices in pharma leadership, learning more about the regulatory environment that pharma marketers work in – but the biggest “wow!” that day happened between my ears.

I realized that pharmaand healthcare in toto – is desperate for its own #arabspring. A complete re-alignment of the entire system, driven from the bottom up, that will benefit all players: pharma, health systems, clinicians, researchers, patients … people. All of us.

This epiphany arrived courtesy of a combination of factors.

First, I felt a little like a zoo animal, since I was the only one at the conference wearing an Official Patient sign. I found that amusing, since everyone in the room is a patient at some level, even if they’re only seeing a doc once a year for a check-up. I’m not even a pharma consumer who’s on a buffet of drugs, although I do take a fat handful of supplements every morning. Why are patients seen as exotic creatures by pharma, and by most of the healthcare industry?

Patients = people, people. Treat us like … people.

Second, since I also wear a PR/media/content-creator hat, I saw that they were making a real effort to understand how they could take advantage of social media as a direct-marketing tool. They were approaching this as an industry with a huge regulatory oversight burden, from the FDA to the US Patent & Trade Commission to the host of regulatory bodies in other countries where these companies sell pharma products to doctors or direct to consumers.

Some of the regulatory step-on they’re struggling with they brought on themselves with “me-too” drug formulation and disease-mongering (“restless leg syndrome”? Really?). In conversation with a couple of high-level folks from big pharma, I learned that they routinely hear “we’ll have to run this past sales” when they want to try a new approach to communicating with their market. Why does sales drive communication? If pharma wonders why they’re seen as a scrum of hucksters, look no further than “running it past sales” when it comes to new ideas.

That combination of being seen as an exotic because I was a patient, and recognizing that, as an industry, pharma is an inverted pyramid crushing itself under the weight of heavy regulation caused, and continued, by a run-it-by-sales communication model, led me to the idea that people (a/k/a “patients”) need to #arabspring this b*tch.

People – patients – need to examine their relationship(s) with healthcare, and pharma, and ask what value they are getting from those relationships. Tell those that help how they’re doing, and tell those that aren’t to either clean up their act or take a hike.

Don’t fall for disease-mongering.

Don’t settle for less-than-full disclosure from any of your healthcare providers – in other words, ask why your doctor is prescribing a name drug, if a generic is available.

Act as if your health is YOUR responsibility. Get off the couch, call a halt to drive-through nutrition, examine your habits and ditch what doesn’t serve you, and your health.

Engage with pharma companies who provide you or your family with drugs that work, and tell them so.

Rabble-rouse the FDA to stop standing on innovation, and to start freeing up both farm AND pharm to help us eat better, and help researchers bring new drugs that actually help to market.

Take to the the streets by visiting your local farmer’s market and buying/cooking local. Boycott processed cr*p disguised as food.

The presentation deck I used at the conference, with added narration, is linked here.

I welcome comments, arguments, suggestions.

I recommend that you read my buddy Phil Baumann’s take on “we are all patients”. (He’s right, BTW – which is why I say patients = PEOPLE, people.)

That’s my story, and I’m stickin’ to it …

Comments (1)

I had the opportunity/privilege to participate in a conversation with other health activists and e-patients about a Digital Patient Bill of Rights recently.

I’ve posted an overview of the conversation on the Cancer for Christmas blog. Give it a read, and tell me what you think. Really.

Comments (0)
Sep
12

“Screw it, let’s do it.”

Posted by: | Comments (0)

The headline on this post is the title of Richard Branson‘s business memoir. The full title: Screw It, Let’s Do It: Lessons in Life and Business. The link will take you to the book on Amazon, so you can just do it and buy the book.

I had the opportunity to literally see Branson in action on Friday, 9/9/11 at Richmond Unite’s #DSRPT11 conference right here in River City (Richmond VA), which also featured some other visionary thinkers who exhorted the crowd in attendance to get out of their business comfort zones and create some disruption.

Richard Branson has disrupted many industries: music, aviation, travel, mobile, broadband, just to name a few. He talked about his failures (Anybody here remember Virgin Cola? Yeah, me neither.), and was anxious to convey the message that his “screw it, let’s do it” rallying cry became even more important to him because of those failures. There is only do, or not do. There is no try. Thanks, Yoda.

The other big thinkers on the stage all shared the same ethos – look beyond what you perceive as your borders, whether those borders are physical, mental, geographical, or just imaginary. If you have an idea, chase it down and make it real. If you fail, get up and chase the next idea. Immobility is your only enemy.

One of the speakers, Harry Singer, said two things during his presentation that really stuck with me, and with other folks I talked to at #DSRPT11:

  • Don’t ask why, figure out how 
  • Don’t tell them what it is, tell them what it does

The first is something we should teach children from birth, and keep on teaching them and each other throughout our lives. The second is a titanium nugget if you’re in sales or marketing: what your product or service does for your customers is much more important than what it is. Communicate the doing rather than the being.

Kelly O’Keefe, a branding guru who’s also on the faculty of Virginia Commonwealth University’s Brandcenter – which is one of the top design schools in the world – spoke about the opportunities present in our current economic downturn to focus on social entrepreneurship. He talked a lot about Detroit – his home town – and the true crisis that city has been in since the Japanese started eating the lunch of Detroit’s Big 3 car makers. That crisis has deepened into a catastrophe as the global economy has imploded. Kelly said it was the outliers – the nerds, the artists, the revolutionaries – who were making a true difference in Detroit, and helping that city rise from its own ashes.

I too had the opportunity to take the stage.  I was to have eight minutes, and was invited to create a slide deck for it, which I did. My slice-o-time was to be during lunch. As will happen, the morning speakers ran long, and since Richard Branson was to take the stage at about 3:30pm, the time was to be made up during lunch come hell or high dudgeon. Each of us would have only TWO minutes, no slides. Two of the eight presenters dropped out because their presentations were so visual. The remaining four that weren’t me did what they did, some ran over.

I was always slated to be the last speaker. My topic was that patients need to seize control of healthcare, which is the only sane path to real and meaningful healthcare reform, no matter what your politics are. I knew I had to do two things: Keep it tight – I took the stage at 1:26pm, the afternoon session was starting ON TIME at 1:30pm – and, since there was a post-lunch food nap induction driven further snooze-ward by the fact that the attendees had been in their seats since 9:00am, WAKE ‘EM UP.

My attitude? Screw it, let’s do it.

Here’s a from-the-seats clip of the last :56 of my total 1:48 (I timed myself like every pro speaker must). The full version will get posted as soon as I get it from the video group who did the gavel-to-gavel coverage. Let me know what you think – I really DO want to know.

That’s my story, and I’m stickin’ to it …