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

"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.


Drew said...

Thanks for the personal share. The rant can be a very powerful tool when necessary. The more I study, the more I read, the more I examine, the more I begin to think that the position we find ourselves in is because too many people sat down for too long. I've enjoyed reading your standing up. Keep up the fight.

DrWes said...

Nice post. As a non-anonymous blogging physician, I share your enthusiasm for transparency, improved patient empowerment through information gained on the web, and web-based patient-physician interaction (access). But my post was directed, not to these important aspects of our new healthcare environment, but rather corporations intervening between the doctor-patient relationship. In health care policy circles, the term "consumer" is usually used in reference to the large purchasers of healthcare (insurers, corporations, etc) - it rarely refers to patients directly: hence my dislike of the term "consumer-driven healthcare." Who's doing the "driving" for patients? Should all patients be expected to make unilaterally and without expert guidance, all of their healthcare decisions? I fear patients are paying higher and higher portions of their healthcare bills while receiving less time with their doctors.

While you advocate "ponying up some cash to 'save' for our healthcare futures," how much does that little website from IBM cost the "system": $5.2 million. Now I don't know about you, but what kind of website costs that kind of money? What will the patients get in return? Would you have consulted the web on the way to the ER to see if that the hospital's ER was ranked in the top 10 in your area or had the best quality rankings? Of course not.

From a patient's perspective, many of your points are spot on (but I remain skeptical that the ever-escalating costs inherent to our healthcare system will be brought under control by more government bureaucracy). But the reliance on corporate America (or even the US government) to cure what ails the system will leave you and me (the patients) left to bankroll excessive and wasteful healthcare initiatives that do not actually provide care. Further, no corporate body will ever advocate for your health like your doctors will, for doctors assume the ethical and legal liabilities to do so through the threatened doctor-patient relationship.

So keep on with your fight, and yes, some day I'd enjoy sharing a beer over this topic...

Sophie said...

Hi Jen, I read this when you posted it last week but there was just too much to take in in one go...

I worked in IT for a long time before moving into nutrition. Before I changed career I had a longish stint doing physical rehab too. I really hope that what I learnt through then informs how I deal with people in my work now. I'm a firm believer that all healthcare professionals need to properly experience being a patient, I just can't think of an ethical way to do it ;-)

I have mixed feelings about massive spending in this area. I'm very much in favour of Health 2.0, but in the UK it's upsetting to see the new NHS electronic patients record system four years behind already and massively over budget when there are other really basic (non-electronic) aspects of supporting consumer-centric healthcare still chronically underfunded. But that's an age old problem and the present isn't about to be fixed by not investing in the future.

e-Patient Dave said...

Holy effing crap, Jen. Now that I've just met you, nearly a year later, I'm stunned.

When you wrote this I had just been in the e-patient game for ten weeks. A total innocent.

This is the most astounding, breathtaking piece of writing I've ever seen on this subject, and perhaps on any subject.

You convey such power, such a sense of overcoming all odds. Wow.

Gaelen said...

Jen, words fail me. O.M.G.
I am also an epatient, for different reasons, but you've reminded me that I need to do more as an advocate beyond simply educating other patients.
Very well ranted.a

Meredith Gould said...

Found your post via the wonderful #hcsm community on Twitter. Bravo and your authenticity takes it out of "rant" domain, IMRHO.

And how fortuitous to read your post today for reasons both personal and professional I'm a fierce advocate of patient-centric care and just recently beginning to talk openly about my delightful chronic illness of 25+ years. Like you, I do not want to be defined by what knocks me down and out at times.

Why? Because I'm discovering that revealing reasons why I happen to know so darn much about my body, treatments, holistic health, medications, traditional healthcare, and healthcare delivery is starting to have some cred...thanks, in large part, to electronic media.

Again and again, thanks for writing this important post.