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Oct 18 2011

Healthcare: It’s time for us to #arabspring this b*tch

By healthcare industry

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 pharma – and 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 …

Sep 21 2011

Digital Patient Bill of Rights: check!

By cancer, e-patients, healthcare industry, participatory medicine

A group of about 20 passionate e-patients, including e-Patient Dave his own self and yours truly, gathered around a biiiiig table on Monday in Philadelphia to talk about what an e-patient Bill of Rights might look like. I have to give a shout-out to my buddies at WEGO Health, particularly Jack Barrette, Bob Brooks, and Natalia Forsyth

e-patients imageOne conclusion: don’t call it the e-patient Bill of Rights. Since we’re talking digital healthcare, let’s call it the Digital Patients Bill of Rights. That conclusion was reached hours into the discussion, which ranged over topics from chronic conditions like diabetes, HIV/AIDS, multiple sclerosis, rheumatoid arthritis, lupus, multiple sclerosis, and fibromyalgia to acute illness like cancer.

We had about four hours to hammer out a first-principles statement, and Mark Bard of the Digital Health Coalition deserves the Cat-Herding Nobel Prize for keeping a group of vocal, passionate, diverse e-patients on task.

To lift directly from the Klick Pharma blog (Klick was one of the sponsors of the event, along with Pixels & Pills, Health Central, Care Coach, Kru Research, Radian 6, Red Nucleus, Think Brownstone, Verilogue, and a who’s who of health media sponsors):

“After an intense four hours, we were able to reach consensus on the following key messages as a foundation to a Digital Patient Bill of Rights:

  • Shared access to my data
  • Attitude of collaboration and overall respect
  • The patient is the largest stakeholder
  • Transparency and authenticity across all areas
  • Voice of the patient is a legitimate (clinical) source
  • The right to efficient communication with providers who utilize the technology that we need”

It’s a start. A damn good one. The Klick Pharma blog post also has a full list of all the e-patients who participated in the conversation. It was quite a day.

Some of my thoughts about the conversation, and the event:
  • Those dealing with chronic conditions have an even deeper need to be activist e-patients. They also have a greater level of knowledge, and can be true leaders in this on-going discussion.
  • Each healthcare consumer – formerly known as “patient” – must take action and responsibility on his/her own behalf. And not shut up until they get what they need to achieve the best health possible.
  • Having town-hall meetings across the country, inviting community members – healthy, chronic, whatever – to attend, to share, and to learn how to both be consumers of healthcare and advocates for the family members who depend on them, would be a great way to keep the ball rolling and drive wide awareness/support for empowered, engaged e-health.
  • Those of us who’ve taken a trip through the medical care car wash have a duty to share our stories, to lead, to educate, to shake up the status quo, to effect change. We get the elected representatives, and the healthcare, we deserve.

Have any thoughts on what you’d like on your Digital Patient Bill of Rights? Tell me.

It’s your health, your healthcare, your life, your choice. Exercise it.

Sep 12 2011

“Screw it, let’s do it.”

By healthcare industry

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 …

Aug 22 2011

How far would you go for medical treatment?

By healthcare industry

medical tourism imageNo, not how far you’d go in the Denzel Washington/John Q/hold-a-hospital-hostage sense. In the get-on-a-plane-toward-care sense.

Medical tourism has seen an exponential rise with patients in the US as health care costs and the number of uninsured patients have risen over the last 15 years. In a TIME magazine piece in 2006, Curtis Schroeder, CEO of Bumrungrad Hospital in Bangkok – somehow, I don’t think he’s Thai – said that in 2005 their census of US patients rose 30% (to 55,000).

That trend has continued, even with the advent of “health care reform” – health insurance reform, really – since health care costs have continued their hockey-stick rise, with no end in sight, for two decades.

50 years ago, patients from across the globe saw health care in the US as the holy grail. Now, US patients are traveling to Costa Rica, Thailand, Mexico, New Zealand, even Cuba to get access to high-quality, low-cost care.

US companies have started to explore medical tourism, and some are offering  incentives to their employees – incentives including getting to pocket some of the savings gained from traveling abroad for treatment. Not enough, however, to make medical tourism a healthy industry here in the US of A.

An August 2011 article in Workforce Management includes a story about a nurse in Louisiana (irony is our favorite thing here at Mighty Casey Media) who traveled to Costa Rica a few years ago for dental work, including oral surgery. She paid $2,700 out of pocket for what would have cost her $10,000 at home, with her employer covering $1,500 of her care expenses. Her net cost for the procedures was $1,200, plus her travel expenses – which travel was negotiated and arranged by a broker, Companion Global Health Care Inc.

I’m sure that, even after travel expenses, her savings were still solidly in the thousands of dollars.

So why aren’t more US companies encouraging their employees to take advantage of medical tourism? According to the CEO of Companion Global, David Boucher – who certainly has a dog in this fight, and who is quoted in the Workforce Management article linked above – the rising costs of health care make the health-tourism choice a no-brainer. He says that their customers are seeing a 2- or 3-to-1 return on investment for medical tourism, and patients – their customers employees – are very satisfied with the quality of their care.

However, according to Joe Marlowe, senior VP of health and productivity at the risk-management and HR consulting firm Aon Hewitt who’s also quoted in the WM story, employers are risk-averse, particularly at the idea of making themselves liable for medical care far from home that turns out badly for the patient.

What do you think? Would you travel 8,000 miles for a knee replacement, or 3,000 for chemotherapy, to save a significant amount of money and still receive high-quality care? Or would you want to be closer to your support system – family, friends – while receiving care?

I would most certainly travel to Bangkok or San Jose for a knee replacement. Not sure about oncology, since that follow-up can be so long-term.

You? I really would like to know.

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

Jul 27 2011

Data, Data, Who’s Got My Data?

By e-patients, EHR, health records, healthcare industry, medical records

 I’ll totally get one. Srsly.

I confess that I’d happily get a barcode tattooed on my neck if it meant I’d never have to fill out another ****ing health history form in a doctor’s office.

I’m totally serious.

Paper records are so … 19th century. With the advent of the current iteration of “health care reform” (which is really “health INSURANCE reform,” but that’s a blog post for another day), much has been made of the importance of Electronic Medical Record (EMR) systems in building a national Health Information Exchange (HIE).

Medicine = Acronym World. The Pentagon are pikers when it comes to fogging the battlefield with impenetrable letter-fication.

21st century health care certainly must involve a lot of easily-shared data, with health history and diagnostic information traveling literally at light speed between doctor’s offices, hospitals, and clinics. Not only does it speed care, it can ensure safety: the right record, with the right patient, makes the right care clear.

The thorny-issue part is this: whose data is it, anyway? Doctors certainly need to have full access to all the data on patients they’ve treated. Hospitals have to keep records on the people they’ve treated on their wards, in their clinics, and in their ORs. Payers (insurers, Medicare, Medicaid, et al) need data access to pay claims, track demographics, and create statistical and financial forecasts. And patients must have access to their own data, at minimum to vet it for errors, at best to own a full copy of their health history since birth to share with providers and care-givers.

I spent 8 months trying to correct an error on the report for the breast MRI I had in 2008 as preparation for my cancer surgery. The report said “family history of breast cancer.” NO. I was Patient Zero, there was NO family history of breast cancer. I fought for eight months, and I’m still only about 90% convinced the error is completely expunged. Patients need access, and we also need easy recourse to error-correction.

Back to EMRs and data exchange: access to patient data must be completely available to all concerned parties. That means doctors, healthcare facilities (hospitals, clinics, et al), and PATIENTS. However, the discussion about healthcare technology almost never includes patients. We’re considered, at best, bystanders; at worst, annoying insects.

E-Patient Dave DeBronkart – Mr. Gimme My Damn Data himself – was the 1st person I heard use the term “e-patient”. The E stands for empowered, engaged, enabled, equipped, equal – not electronic, although that’s certainly a supporting foundation for the e-patient movement. E-patients are usually placed in the “annoying insect” category by healthcare providers who don’t want to share – which can include payers, who can turn a simple record request into a Bleak-House level of bureaucracy. The most epic story in recent history, IMO at least, is Regina Holliday’s now-famous 73 Cents post (and the painting it talks about) – charging patients for access to their own data (at 73 cents a page) borders on the immoral, if not the criminal.

In the long slog through working groups, committees, implementations, and reports-to-the-board that is EMR and HIE development, don’t let the healthcare system leave us – the patients – out of the conversation.

It might be their data, too – but at root, and always, it starts with us. It’s theirs, yours … ours.

Data, Data, Who’s Got My Data?
Jun 26 2011

Geography = Health. Really.

By healthcare industry

After [readacted] years on the planet, I have the great good fortune to have a huge coterie of friends and colleagues, and a lengthened view of all manner of topics.

A convergence popped up to demonstrate that yesterday when a friend (and, full disclosure, a member of my extended family) shared this TED-MED Talk by GiS rock-star Bill Davenhall about the confluence of geography and health:

It makes perfect sense – if you have to stop and think about it, perhaps you’re cognitively impacted by the ozone in YOUR geographic location.

“The environment” is a phrase that we’re at risk of becoming deaf to, due to overuse. I challenge you to do two things:

  1. Look at the children in your life, and ask yourself if their surroundings are making it easier to grow up healthy and strong … or not.
  2. Ask your local hospital or health system if they’ve done any GiS (Geographic information System) health mapping of the areas they serve.

Add a bonus for yourself, and take a tour of the Agency for Healthcare Research & Quality to see what the impact of where you grew up, and where you live, is on your health outlook.

And start asking your doctors to add “where do you live?” to their list of diagnostic questions.

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

Nov 19 2010

The Story on Healthcare Reform…After 11/2/2010

By healthcare industry

I attended a great Disruptive Women in Health Care event last week: Health Reform After the 2010 Election – Assessing the Viability of Health Insurance in the Aftermath of the Mid-Term Elections.

A big title, but it’s a big topic.

In a series of panel discussions, a varied group of healthcare policy wonks and a smattering of journalists offered their perspectives on what the future of healthcare payment & health insurance reform is, given that control of the House is now in Republican hands, and the Senate super-majority won by the Democrats in 2008 is history.

With the economy in the tank since before the 2008 election, and little to show for the massive injection of federal money to bail out the financial markets and the auto industry (other than a continuing 9+% national unemployment rate), it still seems quixotic that the Obama administration picked healthcare reform as its first big policy project.

Dan Gerstein, a Forbes columnist and former legislative aide to Senator Joe Lieberman, said during the first panel discussion, “this was a perfect storm of bad execution on the part of the Democrats.” With the economy and jobs a much larger, and more personal, issue to most of the electorate, the 9 months it took to push the healthcare reform act through Congress took a big toll on the public’s perception of the Obama administration.

Which, in turn, took a big toll on the Democratic Party’s results on Nov. 2.

Now, whither healthcare reform? It seems that the watchword will be replace, not repeal.

Nancy Johnson, who served 24 years representing Connecticut in the US House and is now a public policy advisor at Baker Donelson, said, “people are beyond parties now. Two things have gone fundamentally wrong: endless use of credit, which has led to fiscal collapse.” That translates to an unwillingness, particularly on the part of the states, to fund healthcare reform as it currently stands.

Now that the President will have to deal with a much less amenable Congress, Jim Slattery, a six-term Congressman from Kansas and now a partner at law firm Wiley Rein, said, “the President has a tough choice to make, and only a few weeks to make it. Confrontation or cooperation?” He noted that in a democracy, “compromise is a great substitute for violence,” but I wonder how much of a figurative beating the desire for systemic healthcare reform will take in the name of compromise.

Stay tuned on that one.

The second panel discussion spoke directly about the issue of health insurance: access/availability and affordability. One of the central issues facing the health insurance market is this: if the government is mandating insurance coverage, redefining the role of insurance agents and brokers will be an interesting battleground.

David Reynolds, President & CEO of Coventry Health Care in Maryland and Delaware, thinks that those agents and brokers would be ideal navigators of the new system. But how will they be remunerated for serving as navigators, particularly on the lower end of the market?

Slattery said that moving healthcare toward a utility model, where public utilities are private companies operating under public regulation on price and access, might be the right answer. Add to that the idea of moving the healthcare delivery system from an illness-treatment to an illness-prevention model and we might see some actual bending of the cost curve.

The session wound up with a discussion of what the insurance market might look like with the new Congressional landscape. Janet Trautwein, CEO of the National Association of Health Underwriters (NAHU), which represents more than 100,000 employee benefits and health plan management professionals across the US,  echoed Reynold’s statement that agents and brokers were valuable advisors to companies working to understand the impact of the healthcare reform act. She also noted that the staggering $1Trillion-with-a-T price tag of reform was just the government share of the financial impact of healthcare reform.

Leslie V. Norwalk, who served as Acting Administrator for the Centers for Medicare & Medicaid Services (CMS) in the George W. Bush adminstration, observed that companies might elect to pay the $2,000-per-employee fine for not offering healthcare coverage to their workers, since coverage typically costs between $3,000-$8,000 per employee per year. Even if they pay the fine, and offer their workers $1,000 each toward buying their own insurance, they’d at least break even – and they might save a significant amount of money.

Think of it from the perspective of a Fortune 50 who employs more than 100,000 people – get my drift?

Did the folks drafting the legislation even think of that possibility when structuring it? Were their calculators broken?

My take-away from the morning’s discussion – which I have to say I was delighted to have been in the room for – was that both sides of the aisle believe that the healthcare payment system in the US has fallen, and it can’t get up. The issue at hand now, with the new Congressional balance of power, is how to tweak/replace/re-tool needed reform without increasing the federal debt, and while simultaneously creating a system that truly offers access to all.

I’m a believer in the consumer-driven model, with HSAs for everybody. Encourage people to be active consumers, not passive meat puppets, when it comes to their health and healthcare. Will Congress agree? Stay tuned.

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

Here’s some video of the morning’s events:

Disruptive Women Panel #1 – November 3, 2010 from Amplify Public Affairs on Vimeo.

Nov 04 2010

The Story on Healthcare IT: Creating Connections

By healthcare industry, technology

The highest and best use of IT in healthcare is to create strong, healthy connections between doctors and their patients. One of the most critical pieces of that is giving patients access – both to their health data, and to their healthcare providers – along with permission to engage.

I wear two hats in the healthcare space: patient activist/advocate, and healthcare communications/media consultant. My healthcare-focused company WellCentrix is building a reputation for understanding both the business (doctors & other providers) and the customer (that would be the patients, not the insurers) side of healthcare.

I attended the Virginia chapter of the Health Information & Management Systems Society’s annual conference last week, and posted a wrap-up report of what I heard there over two days of sessions.

If you’re a patient – and we’re all patients, even doctors are patients – you might want to get some intel on what healthcare IT leaders are doing, thinking, and planning.

Click HERE to find out!

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