Showing posts with label neXthealth. Show all posts
Showing posts with label neXthealth. Show all posts

16.8.08

Weekend Roundup: Whereby Jen, Nexthealth Really Get Going and American Well, Hello Health Make Waves

I'm doing a lot of blog/news scrubbing lately as we ramp up for Health 2.0, just over 2 months away in San Francisco.

Fasten your seatbelts ladies and gentlemen; the lineup this show is bigger and better than ever. Companies are showing amazing features. Line up for tickets here.

Meanwhile, perennial Health 2.0 favorites continue to make headlines:

Analyzing the business models of many Health 2.0 firms, you begin to notice something in common.

Despite the astonishing size and spending power of the hospital segment, MOST have taken one look at the siloed, low-margin marketplace and run frantically in the other direction, towards market-oriented, consumer solutions that 'sell' direct to the individual (whether they charge the consumer as part of a freemium model, are VC-funded, or operate using ad-based revenue models).

Many Health 2.0 firms are helping us nibble away around the edges, building a consumer-centric system user by user, providing solutions at an individual level. There are strong exceptions, luckily, American Well is one, with a business-model oriented around the current payor market.

But there are very few, if any, adaptive, fast-moving, Health 2.0 companies providing decision-support resources for existing brick and mortar players, including hospitals.

Someone needs to connect individual and systemic solutions, and provide non-intimidating, accessible ways for hospital teams to plot a roadmap to consumer-centric care using existing needs and future wants.

And they need to do it in a way that drives viral, rapid transfusions.

Some of you are sensing some dramatic irony here. So yeah. I'll admit it. The Nexthealth folks are working on this.

As a result, I'll beg your indulgence - blog posting will be a bit light for the next 2 weeks as we work on building a killer app. and getting speakers ready...see you in Frisco.

27.5.08

Gauntlet is Thrown - Why I Believe in Consumer-Centric Care II

Blogger's Note: This lengthy post attempts to make up for time lost during last week's vacation, so if you're looking for a quick, easy read, come back tomorrow. If you've been waiting for a follow up to earlier posts dealing with consumer-centric healthcare, take a deep breath and read on. Better yet, join the conversation. When I say "healthcare consumer," I mean YOU.

The pessimist complains about the wind; the optimist expects the wind; the realist adjusts the sails — Anonymous

Recently I wrote this 'dear diary' style confessional post, which is quite a departure from my normal approach to writing for Health Management Rx. I took a big risk in revealing my patient backstory, but I believe it's paid off.

The post details (at a personal level) why I believe (at a professional level) a consumer-centric orientation is the only thing that can improve both efficiency and empathy within our healthcare system.

I paused before hitting the “publish” button on this post numerous times, but a wise blogger (thanks Drew!) told me that at some point revealing a personal anecdote contributes sufficient value to the ongoing discussion -especially when it’s coming from an e-patient.

Today’s post, then, is concerned with:

1. Continuing the conversation;

2. Formatting a response that drives readers toward further discussion; and

3. How to follow through and develop new business ideas that expand the current limited scope of the traditional 'healthcare consumer' (with actual scenarios detailing new business approaches).

Since I’ve committed a cardinal blogger's error by waiting so long to publish a follow-up post, I suggest you read the original post first, as well as the comments.

Now on to Part II of Why I Believe in Consumer Centric Care.

First, we must stop treating patients and other healthcare consumers as the "cheap gas that fuels our sector."

If you don't believe this, stop reading now.

The quote above is from the blog "Perspectives from the Pipeline," detailing the career of rising nonprofit czarina Rosetta Thurman - Rosetta, couldn't have said it better. (Congrats again on your new professorship you amazing nonprofit leader you!)

Although Rosetta was discussing the 'disposable' nature of young, idealistic nonprof employees who are used/abused until they burn out and leave 503c waters for greener corporate pastures, the quote also applies aptly to how we currently bill and treat patient encounters in the US healthcare system.

Healthcare consumers are currently (pick one):

A. The "cheap gas that fuels our sector;"

B. Passive receivers of care 'products' and service bundles;

C. Brief, disposable interludes of episodic care delivery; or

D. An illustration of how our interactions with providers are ruled by payment, pricing, and promotion of our current hierarchical structure.

E. All of the above.

If you answered all of the above, there's only one system big enough and powerful enough to connect disparate consumer segments and generate a small series of 'microquake' developments that aggregate into big change - the web.

Future web-based, consumer-directed applications, a subsector of HIT that has yet to live up to its potential, present an opportunity to do just this.

Here's my position: The entrepreneurial creation of semantic web applications is the only movement chugging along fast enough to join patients and providers before the healthcare spend bankrupts our economy.

We can't rely totally on government, advocacy groups like IHI, certification bodies like JCAHO, etc. A commerce-based, consumer-centric approach, driven by companies that pave the way using web-based tech, is the only thing that will move us quickly towards improvement. If a significant portion of the American population starts using 'killer apps' for healthcare, the rest of these organizations will jump onboard.

(Blogger's Note: If you want to hear more about how to harness the power of the semantic web to advance consumer-centric care modalities, come watch as co-author and neXthealth partner in crime Maarten den Braber and I present the concept at SWWS 08 in July - we'll be talking about how the "Semantic Web Sparks Evolution of Health 2.0" and providing "A Road Map to Consumer-Centric Healthcare").

Taking a completely understandable, traditional healthcare perspective, some readers respectfully disagree.

After reading my post and some earlier commentary on PHRs, Dr. Ian Furst, one of the most prolific medblog commentors I know, and whom I'll have the great fortune to meet at Medicine 2.0 Congress, threw down this gauntlet.

After rereading Ian's post, I find one of the only points where our opinions truly differ is that I do believe the internet concretely allows physicians (and patients) to reach out to each other with “greater richness.”

I am, however, sorry to see Ian takes exception to my assertion (and certainly not mine alone) that the web will help save healthcare – the Health 2.0, consumer-centric partyline "goes that the internet will allow you’re [sic] doctor to reach more people with greater richness than ever before. Don’t believe them – it’s bullshit."

And yet the internet is allowing us to do just this. All of our blogs allow us to do this. Ian's blog, written and richly informed by his commitment to his profession as a doctor, allows him to do just that, doesn't it?

To Ian: Do your patients read your blog? Do you tell them about it during visits? Do you invite them to comment and participate in the online conversation?

I won't argue with most of the rest of Ian's entry, as it's spot on - including the point that we're still stuck in Web 1.0 and Health 1.0. I agree wholeheartedly.

As an industry (the business of healthcare) and as an 'art', we're still largely focused on what content, sometimes on what content + community (Health 2.0) can do for primary care, when we need to be moving beyond and focusing on developing a realistic roadmap that will guide us towards efficient, empathic consumer-centric care in a wide spectrum of sectors.

And yes, this means breaking wide the 'traditional' definition of consumers in healthcare mentioned in the comments section by Dr. Wes.

First, my confessional style was not a play for anyone's pity - I don't need or want it - but rather a plea for professionalism and respect as we continue to advance the conversations between patient and provider on how to improve the system for both.

If one more person who reads it begins to think of herself as as 'healthcare consumer' then we're one step closer to improving care, one person, one patient, one provider, one caregiver at a time.

After reading responses and comments from Ian, Dr. Wes, and Drew from Our Own System, I am extremely proud to know professional physicians (and health admin students - there IS hope for the future Drew!) who are equally passionate about improving doctor-physician relationships.

So here's point 2 for the day: We obviously 'get it' here in the blogosphere, and although we differ on smaller issues (Just how much DOES a good consumer website cost, Georgia? IBM?) we're still talking to those with similar views and then patting ourselves on the proverbial backs.

We've ALL got to get out there and pay it forward.

I'm walking the walk here in Holland with a bunch of amazing folks founding neXthealth NL.

What are you doing, dear readers, to talk about consumer-centric care outside our comfort zones? Become cheerleaders for the cause? Seek out voices of dissent?

What we need in the medical and healthcare blogosphere is a classic case of "less me, more we"…How do we connect patient-centric medicine bloggers with policy wonks?

If we get that debate going we might see some real fireworks, instead of just pushing at each other with sticks to drive site traffic.

My question for today is this, dear readers:


Why would we NOT try ANY and ALL measures available to improve patient care, even if it is a PHR designed by a consumer-company or a consumer portal that costs 5.2M?

Let's answer the question above using actual business case scenarios, and detailing how future web-based developments may help expand the current healthcare consumer spectrum.

Dr. Wes detailed a dose of healthy skepticism about 'consumer centric care' in the comments section of my original post.

He implied that if I was in an ambulance on my way to an ER I wouldn't stop and check the ER's ratings on my mobile phone. Let's start with this example and examine how the semantic web might help drive us towards consumer-centric care.

First, Dr. Wes's assertion is not entirely correct. My main point with pushing the consumer-centric discussion is that if companies build these types of services, SMARTLY consumers will use them.

If a mobile, web-based app was available on my Blackberry for me to quickly and easily access ER ratings info (within the 'holy trinity'- 3 clicks to information access), I would use it - yes, even from the back of an ambulance if I was capable of doing so.

Of course, that's the big "IF"...and there's simply no way to predict if I'll be conscious and cognizant enough to use such a service. But I'm not the only consumer who would find such data valuable in this scenario. Let's flesh out the example a bit.

Scenario I using Dr. Wes's example: PATIENT AS CONSUMER (during care).
If I was in an ambulance on the way to an ER and physically/mentally able to use my mobile phone and access a web-based app that lets me check quality and safety ratings (i.e. not coding and conscious), I might indeed check to see if an ER was listed in the top 10 in my area.

If I have a rare, chronic condition for which I'm currently under treatment, I might also use this service to send an email to my treating specialist using my cell's address book, letting the office know I'm on my way to that ER. This would provide continuity of care, especially if my condition were to worsen en route or after arrival.

Scenario II using Dr. Wes's example: PATIENT AS CONSUMER (prior to care).
But most likely I wouldn’t NEED to go that far, because if I was conscious I’d be able to recall looking at a website to see top EDs BEFORE I’d need them, when I read a blog post or press release or saw a news article about this new 'killer' app (no pun intended).

And now I'll push the point even further.

Follow along carefully because here's where things really get going.

When we succeed in creating a truly consumer-centric American healthcare system, quick-thinking, fast-moving startups will create services and products for consumers outside the 'traditional' categories, like patient and provider.


Scenario III using Dr. Wes's example: AMBULANCE CREW AS CONSUMER.
In this instance, if I was on my way to an ED, my ambulance crew might use a web-based application to check wait times/availability at several area hospitals simultaneously without radioing to all separately.

This would allow them to choose a route more quickly, accept it on the mobile device, and instantaneously upload driving directions to the in-ambulance GPS unit. Meanwhile this killer 'Paramedic 911' app might also transmit arrival time and patient stats to the hospital ER prior to arrival.

In this case the paramedic crew is the 'consumer.'

Scenario IV using Dr. Wes's example: FAMILY/FRIENDS AS CONSUMER.
Also, even if I’m unconscious, if I’m in an accident or injury and a family member, friend or spouse is following the ambulance, there’s a good chance THEY would be checking on a mobile, web-based application to see if the hospital where we were headed was highly rated.

In this case the family member following my ambulance is the 'consumer.'

The scenarios above are a bit out there, but not too far out in the future - the web-based infrastructure to build these services is in place.

Now all it takes are startup teams with vision, drive, a really good developer or 20, and dollars. Health 2.0, neXthealth NL crews - who wants to take these concepts and make them a reality?

One of my main points in the original post was that current ‘consumer-centric care’ includes both the patient and physician in the care process, which may (or may not) be facilitated by technology and ‘corporations.’

One of my main points today is that a fully-realized ‘consumer-centric’ system involves many more parties than just the patient and physician. So anyone using a mobile phone to check hospital rankings then becomes a consumer (including the hospital Board member or exec who is checking to see how they rate).

And a further point of clarification. I don't seek to raise the perspective of the patient over that of the physician. To the contrary - I in no way want to unilaterally make “all” of my healthcare decisions, and I don't want the web to replace the relationship I have with my docs. I want it to augment and support that relationship.

It is this example of mobile, highly personal interaction with tech that demonstrates perfectly my deep, individual support of your main theses, Drs. Ian and Wes - that relationships between physicians and patients are intensely personal, and that ANY tool we test, including the web, MUST improve communications and care rather than clutter up the airwaves.

Tools not used are tools wasted waiting for an applied purpose.

Tools used incorrectly are a drain on systemic productivity.

But who currently defines whether or not the tools that enable us to possibly enhance care are used "incorrectly?"

In a more 'democratic' system, BOTH patients and providers, as partners in care, must co-determine which tools allow us to move towards more efficient, empathic, consumer-centric delivery.

In a more democratic healthcare system then, many segments of consumers will use tools such as the web to move towards consumer-centric care.

But first, give e-patients - empowered patients - the tools we need to communicate better with our physicians, to harness the power of personal goal setting (and attainment), and that, my physician friends, will change "our" system.

The web is just one of many tools in our arsenal to save healthcare, but it is a big honking John Deere rather than a wimpy garden spade.

My point is that nothing short of massive collaboration, continuously evolving entrepreneurial activity, and a new way to view the communications between all stakeholders in the healthcare system will save the private-public hybrid that is the current American healthcare system.

The web is ready and waiting for companies to develop applications that do just that.

The government is also getting ready though

But Dr. Wes's point in the comments section is excellent - it's absolutely going to take a he&% of a lot more than a government/industry partnership, as illustrate by this example of Philly's failed 'universal wireless' project.

Do we want to see federally funded universal care programs administered by HMOs enacted in 2010 and failing by 2015?

And us consumers?

We're tired to death of having traditional choke-hold messages forced down our captive throats in other industries - but we haven't yet risen up to protest spoon-feeding (or more aptly syringe-feeding) in healthcare.

We haven't yet seen the rise of consumer-oriented, web-based service companies that show us the light, show us how things could be. That show us we can look and want and need and buy and participate more in BOTH the art and the business of getting better.

But these firms are out there, and the scenarios I describe above are on the way - make no mistake.


The telephone, the internet, Google, neXthealth - some entrepreneur will step up and show us what being at the center of the healthcare web, literally and in tech lexicon, can look like.

And once we realize all the choices out there, we'll need help navigating the system.


Lucky for you, Dr. Wes, we're still at the point where we'll largely come to our docs for this type of assistance.

We still trust you MDs...
we don’t want to replace you with tech - let's all keep it that way by being open beta testers of innovations that could improve care -web-based or otherwise.

The mainstream media, in addition to the blogosphere, are already on the case, one prophet at a time, convincing consumers to move towards proactive wellness goalsetting.

It's happening in other industries. Let's take telecom again for example...30 percent of us now receive most or even ALL of our calls on cell phones.

As a physician, you appropriately emphasize the importance of communication. So, Dr., how are you adapting your communication style to keep up with new conversational pathways?

It's only a matter of time before consumers realize our healthcare is entrenched in methodologies as antiquated as the gramophone.

Yes, medical technologies wide and wonderful have been introduced. But the care process, the actual design of hospital and healthcare delivery, has changed little since the Roaring 20s.

We also thought we would be fine without penicillin, the x-ray, respirators, ex-fixators, chemotherapy. Of course we would - we didn't know any better until a game-changing innovation, often, gasp, a technology, modified the care process.

And, my friend, I warn you - once we know this, and our money talks, where we can't interact at will - we will walk. And you will too.

Your best hope, if you want to avoid this big-bang evolution, is to pray for federally-funded healthcare and a completely socialized system.

Plus, only 14% of 940,000 docs in the US have minimally functioning EMRs in place, so you've got 84% of market capitalization to rest your laurels upon before you have to actually implement change.

I say the semantic web will save healthcare because it will help unleash increasingly powerful market forces of supply and demand.


But it is certainly not the ONLY factor to do so - current disruptive innovations like retail clinics and "focused factory" specialty hospitals, as well as concierge care, all turn consumers minds (consumers = patients, providers, payors, physicians, pundits, etc.) to a more robust discussion of value in healthcare...


And this circles us right back around to the control issue.

What IS value in the current healthcare system? Who defines it? And why the he@% didn't anybody invite patients to the prom sooner?

Vanderbilt sets the bar higher than ever before with a “no tolerance for unprofessional behavior.” The goal? To ensure a quality patient experience. Get it? Professional behavior in the medical sector = QUALITY EXPERIENCE.

Until we start thinking, developing, and implementing tools to ensure a quality experience for ALL consumers who interact with the healthcare system, we're still sitting dead in the water. Get going. Stop waiting for someone else to throw you the oars.

13.5.08

Confession: Why I Believe in Consumer-Centric Care

From a comment posted in response to this article in the Wall Street Journal Health Blog re: Georgia's 5.2M partnership with IBM to create a consumer-friendly website:

"What in the blazes is this dopey thing going to do? I will choose a doctor based on a website? Give me a break!"

-William DeDonis, May 12, 2008

William - funny, some younger readers perusing the comments section may be thinking: "How else would I choose a doctor?"

I had a different plan for today's blog post, a very neutral academic take (read: boring but beneficial) on sustainability and long-term value creation in healthcare.

That can wait.

Instead, I have a confession to make.

I am an e-patient.

I believe, 1,000%, in the benefits of a consumer-centric system.


I am living proof that a consumer-centric orientation works, one patient at at time.

This is the reason I'm *slightly* obsessed with the evolution of Health 2.0, and defining the adolescent growth stages moving us towards fully realized consumer-centric care.

This is why I'm helping build a roadmap to get there (lots and lots of nights and weekends people, including this one).

This is why I'll keep proselytizing about the total and utter necessity of combining efficiency (quality, safety, cost, transparency) initiatives with empathic approaches (Jacqueline Fackeldey's "human-to-human hotealthcare" concept encouraging patients to become proactive partners in care).

Do I expect every patient to engage with the system at this level? Of course not. I'm part of the top 10 percent of 'superpatients' I discussed in the 10-80-10 rule here.

Emotion doesn't often rule my professional responses, but after reading Dr. Wes's post yesterday, it certainly is fueling the keyboard for this blog post.

If Happy Hospitalist can get away with this one though, I can certainly rant in a far tamer fashion here.

This is, dear readers, most definitely a rant, a tactic I usually find counterproductive and tend to avoid at all costs.


But not today.

As an e-patient, I am tired of sitting down.

I am tired of shutting up when told I shouldn't have access to the tools I need to maintain my health and improve my wellness.

I get the good doctor's sardonic tone, the irony, and his well-made point that consumer-centric care (patient-centered care) should be much more than a 5.2M website created by the great state of Georgia in partnership with IBM to help consumers compare cost, quality, safety and physician ranking data.

All in all, a good post Dr. Wes. Not your fault you picked on my personal crusade of choice, or chose to post a car accident photo in accompaniment.

No, no, it's the devaluation of HIT and the inference that the IBM/Georgia site won't be worth the money that really gets me going.

Whatever the state is spending, technology is one tool that patients and physicians use to gather, collate, combine, disseminate, share, and review information. God forbid.

So if it costs 5.2M for patients to have one-stop access to data that helps us become more involved in our care, that's a great way to blow part of a budget.

Or would you rather we spent it on subsidizing gas purchases, repaving a stretch of highway or funding our next excursion to the Middle East instead of saving healthcare by getting consumers more involved (or at least taking a baby step in the right direction)?

In terms of costs, incentives, and responsibilities for maintaining the US healthcare sysetm - 2.2 trillion is unsustainable. 47 million uninsured is unsustainable.

Don't make this like the retirement planning industry - complexity is not our friend and we are still waiting for the 'killer app' because we haven't acknowledged that no changes or innovations can succeed in a market lacking incentivization adequate to lift intermediaries, innovators, interrogators, and implementers out of a frozen, deer-in-headlights inertia-state.

Despite all of this, consumers, "patients like me," are asking for additional tools to help navigate the increasingly complex healthcare landscape.

Those of us with chronic conditions realize the cost burden is being slow-pitched our way - without the education and training needed for most to make the catch.

Consumers have plush pockets (or at least we're still spending like it's 1999), but we need insight, expert guidance - like that our docs have! Imagine that! And we've 'put out' the dollars (or at least the high-deductible catastrophic coverage insurance plans) to back us up - consumer spending hit an all-time high last year.

Too much stuff, too much food, too little savings, too little prevention.

Overconsumption is literally killing us, not to mention our friendly local ED staff, who, if they'd grown up wanting to be drug dealers, babysitters, meal-providers, or work release note writers, would have staked out a really sweet street corner or abandoned rowhouse.

While I don't have the economic chops to elegantly detail the symphony of woe that is our national negative savings rate trend, I do think we should pony up some cash to 'save' for our healthcare futures.

Bring on the tax increases, post-Bush Prez. Universal, federally funded, deficit-dictating healthcare for all!

Or at least for more than those sitting pretty on the unsustainable Medicare/Medicaid rolls or lucky enough to live in Massachusetts.

Plus, I'm sure the HMO's and lobbyists will just sit around while you effectively shut the doors on their uber-successful business models.

Maybe I should just move back to the Philly area - Rita's Water Ice wasn't enough incentive, but this story sure is...and you say the best we can hope for is improving the quality of care?

Well, WSJ, throw me in that briar patch. I'm willing to consume more than a few buzzwords for the cause. And I surely can't figure out doc rating sites or make decisions based on peer-ranked reviews - Consumer Reports and my monthly utility bill are so much easier to read...

We could always adopt the Commonwealth Fund's take on funding universal healthcare, which is really a recombinant mashup of the Dutch, Canadian, French, and New Zealand systems (did I leave any of the countries our healthcare pundits idolize out?)

But don't take my word for it.


I'm calling in the heavy artillery: some news sites, editorials, personal anecdotes, and e-patient pals - e-Patient Dave, Paul Levy at BIDMC, and Dr. Ted Eytan.

Even Johns Hopkins trusts parents to be involved, proactive partners in care...some choice quotes from a recent article referencing a program to involve parents during pediatric rounding:
  • "So it makes sense to involve her in Ali's care..."
  • "What the families said to us is, 'We hear what you're talking about anyway, so you might as well involve us,'" said Loretta Wall, a social worker who chairs the children's center's patient- and family-centered initiative."
  • "We have to no longer view them as visitors. They're our partners. They need us and we need them ... to achieve the best outcome for their child."
  • "In the old days, it was more, 'You're the doctor, you decide,'" Muething said. "Families want to be involved in decisions. It switches the control."
When will other physicians give up the sanctity of the white-coat cult and let the rest of us in?

And by the way, if you don't think the next generation will change medicine and care delivery - watch out - Guitar Hero Healthcare is on its way.

95% of 16-18 year olds use social networks.

You think these Millenials will interact MORE or LESS with their virtual networks when they get sick or tear their ACL playing soccer?! And yes, they WILL want to share screenshots of their MRI, superimposed with snarky comments like "I can haz pain pill?"

Why wouldn't you want to increase our med compliance by doing something as simple as scheduling a text message?

Oh, I forgot, that means you might actually have to TALK to us. You might get a REPLY text - shoot, you might even get an EMAIL. We might expect to have access to your office like we do to other service providers.


And if you're not paying attention to customers, you're falling behind payors yet again....Minnesota and Florida Blues now have 'unscripted,' uncensored sites gathering consumer feedback.

But don't despair - some payors might actually reimburse you for answering that email.

And that's not your only source of extra discretionary, "I decide when to practice, I decide where" income, unless you're among the last to sign up for American Well's service, which is funded via patients' insurance plans.

Do you really want to take second place to HMOs?

What do you think they'll do to a doc who is consistently mentioned on the site for medical errors and adverse outcomes?

Power to the patients...
.

As I said earlier this year - consumer-directed care is already here. If you're fighting it, you're fighting a losing battle - you're fighting ME and other hyper-engaged patients like me. I am most definitely an "unrealistic pain in the butt" (from the comments section on Dr. Wes's post).

Reading the slew of recent posts and articles detailing such basic customer service functions as 'treating patients politely' reminds me of how it feels to be a an e-patient dropped into the current system.

Folks - be prepared - sometimes it's like a group of seals have spotted a Great White. At others its like you're the last Unicorn - a mythical sad figure that no one quite knows how to save.

Why am I so utterly convinced a consumer-centric orientation can save healthcare? Because it did for me.

But as my buddy Gary Baldwin at Modern Healthcare says - take my story with a grain of salt, don't treat it as gospel - anecdotes are sometimes misread as trends.

Every once in a great while, if you have the guts to push for consumer-centric care, your docs like you and allow you to do 'crazy' things- like debate anesthesia options, for example.

This way you learn about combining general with the Ogee pain pump and voila - you have an unexpectedly grand outcome like being off narcotics 24 hours following a calcaneal osteotomy and revision w/allograft block, a talo-navicular joint 'revision' and an achilles tendon lengthening.

You also learn your anesthesiologist went to med school with your former surgeon - not until he was 28. He tells you it's never too late. You believe him.

After surgery, a belief in consumer-centric care allows you to confidently tell your doc you're down to Ibuprofen 48 hours later. He laughs. His whole office knows you by your first name, asks how PT is going.

Patient -centric care is priceless. And that's part of the problem. We don't know what we're costing, we don't know what we're worth.

The reason I am so engaged in consumer-centric care, the reason I am a healthcare consultant, journalist, and blogger, the reason I review business plans and HIT startups for peanuts (and often just the shells) is this:

For 7 years, visits to hospitals, surgeons, docs offices, and physical/aquatherapy clinics were a fact of life.

I won't often talk about my injury on this blog - my accident and recovery forms a portion of who I am, but it does not define me, my profession, or what I am capable of accomplishing.

Sometimes, though, you have to give away a bit more than you're normally comfortable giving to get the larger point across. It's a horse trade I'm willing to make here.

There is a time in every e-patient's life to reveal why the pursuit of such a strange goal - who cares about saving the healthcare system, who cares about how physicians, patients, payors, and other providers interact - becomes a passion in your life
.

The short version:

  • At 20, I fell asleep at the wheel less than a 1/4 mile from my house.
  • I drifted across two lanes of traffic on a narrow, winding country road in Southern Maryland on Memorial Day weekend.
  • It was just after 2am.
  • Without accelerating above 50mph (one of many miracles), I hit an 8 foot iron ships' anchor, nestled on a cement base, dead on. (Yes, you read that correctly).
  • The force of the impact crumpled the engine block of my red Saturn like a tuna can.
  • My right ankle and knee took the brunt of the force. For ortho docs - I had a Hawkins IV talar fracture with complete dislocation of the talar neck and body. Also a nice big chunk completely missing (somewhere on the floor of the Saturn).
  • When I regained consciousness in the car it was like looking at a fresh plate of Bloomin' Onions.
  • Every bone in my lower leg was fractured - many compound.
  • My right foot was turned almost 90 degrees to the right - and my quad and patellar tendons had been completely pulled away from the patella.
  • I'd lost a *bit* of blood, had a concussion, and a pneumothorax on my right lung.

Initial surgeries included a repair of the knee area at our local community ED. Ortho surgeons Dr. Bauk and Dr. Travis, to whom I will always be grateful, flushed out my right ankle with over 9 liters of saline. In the operative notes they recorded seeing glass, bits of jeans, leather sandal pieces, and carpet fibers washed from the site.

Not sure what to do with this high-impact injury other than amputate, they swaddled me up and shipped me to the Trauma Center at UMMC.

There I had the amazing good fortune to be cared for by Dr. Andrew Pollack, now Chief of Orthopaedic Traumatology, and associate ortho doc for the pro-football Baltimore Ravens.

Multiple surgeries and five days later, I was ready to head home and 'recover.'

But we hit a little snag when trying to get me up and around and ready for transport.

Despite all the medical advances available, the combined expertise of more than 3 teams of physicians (ortho, trauma, pain management) - no one could figure out the mobility issue - how to help me get up and around after the first 4 surgeries.

When we tried to get me up on crutches, everyone realized we'd forgotten about the knee injuries.

I couldn't move my right knee as a result of the quad and patellar tendon repairs (and no one had any idea if I'd regain anything approximating normal knee motion anyway), so I couldn't have the weight of the fixator in a dependent position.

Most people would have gone into a wheelchair at this point, but Dr. Bauk, my initial ankle surgeon, told us bluntly that if I got into one I'd never get out.

So instead, my parents rigged up a system. One pin of the ex-fixator bisected my heel laterally and connected to other portions via Tinker-Toy-type hubs. My father pulled out a shoelace and tied it to either end.

We then figured out a way to 'walk' me.

For 6 months, until I could support the weight of the fixator with my recovered knee, each time I wanted to move, someone grabbed the strings and helped me extend my right leg in front of my body at a 90 degree angle parallel to the ground.

I used a walker, and we stepped in concert. One step back for my escort, and one step forward for me and then a hop on my left leg using the walker. It was literally like walking the dog.

And this issue was solved not by some of the best medical minds in the civilized world, but invented because the patient/consumer (me) identified a specific wellness need: "If I can't move around I'll lose my &*&$_(*&^$ mind."

Those of you whom I've met this year jetting around the world know I've been blessed with an amazing recovery.

Seventeen surgical procedures later, I am doing what I'm doing today because of the combined efforts of a miraculous care team, which includes not only my physicians, but my family, my friends - and yes, my determination to be a partner in my own care.

And here's what's missing from modern medicine - a focus on the patient/consumer 'self.'


This is what consumer-centric care, Health 2.0, neXthealth, etc. is really all about - returning the patient to the center of a care system that respects and encourages choice and cooperation.

It is a care system focused on conversation rather than dictation, at least for those of us on the 'discretionary' end of the care spectrum (fully 2/3rds).


Here are a few more choice tidbits I learned about "consumer-centric care" that I could only have gathered from my own experiences and chatting with other patients in hospital cafeterias, cast areas, and waiting rooms (lots of them).

It is now my responsibility to 'pay forward' this information to the physicians who treat me.

It is now the responsibility of all e-patients to 'pay forward' the benefits we carved out through our personal investment in creating a 'consumer-centric' spectrum of care during our own treatment.


So Dr. Ted Eytan, e-patient Dave, you guys put together a conference or seminar for med-students and docs and I'm in.

For med-students reading this blog - here are some things I've learned as an e-patient, and a few tips to incorporate into your future patient interactions:

  • I learned the right way to crutch up and down stairs. You can't tell someone this enough. Don't lean on the crutches with your armpits. You'll get blisters, pinch nerves. Plus, if you do it the right way you'll get some really amazing arm muscles. Crutching is scary. Ask someone to walk down the stairs in front of you first. Ask if us we need help, how we're getting around. Ask us if we're moving forward. Yeah, that's a metaphor.
  • I learned Adidas makes some really snazzy pants that snap up the sides and are great for half-hiding those with 15 pound Helvetica ex-fixators...it's all about how NOT to look like Hell Raiser. People will stare. They will be rude. At a showing of "Unbreakable" in which Samuel L. Jackson has an ex-fixator, one man asked if I was "part of the show." Children will point, make comments, one even cried in the mall. Then I cried. Men's boxer shorts also work well for really bad days, and they come with neat designs. Ask how we're dealing with looking different, feeling different. Make jokes about our fashion sense. We like knowing we're still human, even if we don't necessarily feel that way inside our illness-husks.
  • I learned what it feels like when your body atrophies and you drop 6 dress sizes in 4 months. You are always cold. Everyone tries to feed you desserts. Ask about our appetite. Talk about how, for many of us undergoing major surgery, the taste of plain water is for some strange reason, abhorrent. Also the smell of fried chicken. And - still - lilies. Tell us to hang in there - senses like sight and smell and taste are often different than 'before.' Taste buds will sing again for most of us. Suggest diet Sprite, Clearly Canadian. Remind us to feed our bodies and spirits to heal. Don't be afraid to respond in spiritual terms. Once when I asked Dr. Pollack what else I could possibly due to encourage bone healing, he gave a one word answer: "Pray." Yeah. I did that. Doctor's orders.
  • Scars are sexy. At least mine are, but it took me quite a while to 'own' them. Now Franken-knee is a point of pride. As is the iliac crest harvest site on my left hip where I can still fit two fingers side-by-side. But, tell is if we're worried about scarring, there are things we can do after the stitches and staples come out, like apply cocoa butter, 100% Vitamin E from capsules. I did that for 2 years straight. Plus, then you smell a bit like you're going to the beach instead of back to the hospital.
  • Also, don't tell us having stitches, staples, casts, or surgical dressings removed is a breeze. That is a load of crap. Often those things are crusted on post-op bleeding like barnacles to the belly of a whale. Ask us if we need to pause and take a breath, but also let us know you'll work quickly. I actually hated stitch removal around neuropathy sites so much I asked Dr. Pollack if I could do it. I'll never forget the day he showed me how to remove sutures in the casting room at Kernan. God bless a doc who listens and lets us be involved.
  • You are not often hungry, and you are always tired. Low level pain is a constant, like a toothache, but you learn to compartmentalize, put it at the back of your mind like a sore throat - or semi-ignore it like a hangnail. You learn to not let it matter, or at least to convince yourself this is so. Ask us how we are dealing with pain, and DON'T automatically pull out the prescription pad. What we need isn't always a new narcotic. Sometimes it's an empathic ear. If you can't give me more than 15 seconds of that, tell me about an online community you read about in some journal or some other doctor's blog. Help me find community that is going through the same. Have a conversation with me. Talk is never cheap.
There's plenty more where that came from.

I leave you with this.

Young, vulnerable docs, if I have to hear a physician saying one more time that the 23.7 odd years it took him to get through med school, residency, internship, fellowship, etc. are more valuable than my 7 years of continuing surgeries and rehab, I'm going to lose my lunch.

It's not MORE valuable, it's a DIFFERENT value.

That's why someone else is the doc, educated and trained, and I'm the patient, experienced and involved.

But 7 years of going in and out of hospitals and negotiating with physicians, payors, employers, other patients has taught me one thing: patients, consumers, most definitely are at the center of the system.

We are the ONLY thing that connects disparate elements. Can't we get a little respect?

Again, I don't want drugs, I want disclosure. I want details about my care.

I want you to talk to my like I'm a business partner interested in optimizing wellness value, not a patient to be pitied, not a woman melting under the weight of living with a once-broken body.

Do I sound beaten to you?

Look, the pulsing heart of the matter is that both of us have put in our time -physicians and providers - probably shed plenty of blood, sweat, and tears to get where we are today.

Many patients, many caregivers, many consumers are looking for ways to maximize ROI and reduce the terrible costs wrought by illness and injury.

You are too. That makes us more than co-collaborators, co-conspirators, consumers and providers - that makes us partners in care.


Medicine is most definitely an art and a science and a business - and a social contract, where all parties involved have obligations.

All you have to do is shake hands, or at least play me at rock-paper-scissors to seal the deal. Then keep being a doctor. I'll keep being a person who is also, occasionally, a patient.

Both of us have experienced incredible failure and incredible success. We are not the same, you and I, but we have much in common.

And we are BOTH consumers and providers in this system of ours - we both pay into the system and buy what it is selling. At some point, you will be sick. At some point, you will be a patient.

But you are ALREADY a consumer of healthcare/wellness services, contributing to the combined healthcare foodchain.

Your lifeline, like mine, has a start point, and an end point. Birth and death are your endcaps, just as they are mine - everything in between is negotiable.

So, finally, let's sit down at the table together. I bet it'll take just 5 minutes before you stop caring that I use the term 'consumer-centric care.'

"Doctor education patient education - essentially the same" (a quote from a brilliant anonymous commenter on Dr. Wes's post here - glad someone with this perspective is teaching med students).

For every doctor story there is indeed a patient story, and this is precisely my point.

We are both consumer populations, we are both provider populations - partners in life-giving doctoring and patient-giving livelihood.

That is, if we can stop being antagonistic long enough to become logically analytical and empathically aroused by our mutual plight.

And finally, a good night and good luck quote from
e-patients:


"I forget who first coined the term "hairy audacious goals." But we need them for reforming America's health care system."

—Humphrey Taylor

And another from Dr. Vijay Goel, Health 2.0 entrepreneur:


"Hospitals seem like the worst place to start the consumerism movement– for anything outside of elective outpatient procedures, in many cases the individual is not in a position (contextually or emotionally) to learn how to shop for healthcare."

Will we prove them both right? I sure hope not...but what do I know? I'm just an e-patient.