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#HCSM Review 36: Exploring healthcare costs, access, e-patients as experts

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Welcome to the MightyCasey–hosted edition of the HealthWorksCollective #HCSM Review, a peer-reviewed compendium of timely, on-topic writing about healthcare from across the web.

Last Friday, I put out a call for posts about healthcare costs and/or health insurance innovation for the HCSM community. Here’s the brain candy that flew over the MightyCaseyMedia transom:

First up: an examination of STD occurrence alongside STD testing costs in the New York metro area from ClearHealthCosts.com (@chcosts), written by Sherry Mazzocchi. This is a deep dive into the incidence of STDs across New York City, with snapshots of what consumers actually pay for STD testing at a number of facilities across the region. Runs from $0 (for members of a subscription medical practice) to $600 for women who visit a Westchester County practice. Like Uwe Reinhardt has said for years, healthcare pricing is chaos behind a veil of secrecy.

For patients looking to pierce that veil and direct-pay for their care, ClearHealthCosts’ founder Jeanne Pinder offers up this post – New ways of paying: Cutting out the middleman. Seems like everybody’s looking for a better way to hold down health costs. In a number of cases, that means patient and provider are getting together directly, without the middleman (the insurance company). You could start asking, “How much is that?” and acting on the answer.

With Oct. 1 and the dawn of the ACA’s new health insurance marketplaces, Jeanne Pinder shares What it means to you: Oct. 1 and buying health insurance. Maybe you avoid the topic of health insurance, but you can’t any longer. If you’re not covered by employer insurance, Medicare or Medicaid, you will need to know things about buying insurance (or choosing not to buy it). Her post offers some actionable advice on how to figure out what the marketplace means to you.

From one of my favorite places, Costs of Care (@CostsofCare), comes a post by David Marcovitz titled “A Routine Denial,” about how it feels to have an expensive test declined by your insurer after it’s been done. If you’ve ever been on the receiving end of one of these notices, you know that it feels anything but routine. After the appeals process. David discovered just how chaotic healthcare pricing is. A great read.

Like David, Brave Bosom founder Andrea Downing (@BraveBosom) discovered that she had a genetic predisposition to a disease. In her case, it was BRCA, the genetic mutation that increases risk for breast cancer. Andrea is a leader in the young “previvor” community, and offers up this post on what healthcare reform means for her, for her community, and for other people who have potential destructive dynamite in their DNA. Genetic testing and counseling is a terrific resource; worrying how it might impact your insurance coverage shouldn’t have to be a consideration when you’re making a decision about your health.

ePatient Dave deBronkart (@ePatientDave) is a world-famous (really) patient activist. He’s written two books, and spoken at conferences across the globe. His post “Ratty boxers: what it means to really, truly have no money” resonated powerfully for me, since all e-patient experts face the same challenge: patients aren’t yet seen as experts worthy of remuneration by the healthcare industry. Dave has helped move the needle on that – here’s hoping that his message spreads into the hearts and minds of organizations who are still expecting patients to pay for the privilege of speaking to audiences who need to know what we know: how to make healthcare more human-friendly.

Alan Brewington (@abrewi3010) blogs at PainTalks.com – he’s a guy with chronic arthritis from some rather epic sports injuries. He sent along a post on the pending health insurance exchanges from the front lines in a Red State: Idaho. Titled “Health Insurance Exchange, Idaho, Arthritis, and Me,” Alan’s post walks the reader through an exploration of the new health insurance exchange marketplace, figuring out what kind of coverage is available at what premium cost. As a chronic pain patient, Alan knows more about the ins and outs of health insurance than the average guy his age, and makes some good observations about what it will take for healthcare reform to work.

Closing our cavalcade of #HCSM awesome, here’s a post from Carolyn Thomas at MyHeartSisters.com (@HeartSisters) on how online communities help patients cope, and give them the power to move on. “Discover. Join. Leave.” is a great journey through the life cycle of online patient groups. Some come and stay, others arrive looking for specific help, all make a contribution when they can. Peer-to-peer healthcare is a web, just like … the web. Carolyn tells a great troll-taming story, too – another terrific read.

If you’d like to participate in the HealthWorksCollective #HCSM Review – click this link to look at the schedule, and find out how to get on the list. Thanks for reading, and I’d love to hear your thoughts in the comments!

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

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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 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 …