1. Consumer-Driven Healthcare-- crock or crusade?
2. Doctor and hospital ratings-- fad or phenomenon?
3. John & Jane Doe-- patients or consumers?
I'm starting, then they'll counter, then I get a rebuttal, and so forth. Hopefully, it'll be entertaining and informative. Feel free to join in and make your thoughts known (I don't mind being handed my fanny once in a while.)
Unfortunately, I have to go first, so here goes...
Pete and Matt are right. E-health is all about the patient. Really it is.
After all, the Goliaths of Business tell us so.
You know them: Google, Microsoft, Walmart, Walgreens, IBM, Aetna, UnitedHealth, MedCo, Blue Cross, Quest Diagnostics and many, many many others. All told, as of 20 May 2008, the valuation of these companies alone exceeds $953 billion (yes, that’s right, nearly one trillion) dollars: a sum that is half the entire domestic product of all of China and a formidable sum to even begin to comprehend.
You the Consumer
With that purchasing power, we are now only too happy to hear that they are all about health, too. No doubt some of this corporate response is driven by the need to simplify an abysmally complex healthcare delivery system and Byzantine medical billing systems. But just as probably because the nation’s healthcare tab exceeds $2.3 trillion dollars and represents a rich cornucopia of new revenue streams. So, like knights with really shiny armor, each is ready to swoop down to rescue the healthcare system and its "consumers" with nothing but pure beneficence as their goal. Yes, dear patients, they’re all about you, the "consumer" and your "wellness."
After all, you are entitled to any healthcare you want. You deserve the best, the newest, the shiniest, the most plush accommodations. Anytime, anywhere, 24/7. You, dear consumer, can have it all. Oh, it might cost you a bit, sure. But our ever-friendly insurers are here to help with that. Just please, keep “consuming,” for when you consume healthcare services, you feed the beast that feeds our new economy. Our business partners will be sure to provide the information about your choices for hospitals and doctors and testing facilities for “screenings” and “prevention” right at your fingertips. And because they know that each state has different rules and different insurance policies, they’ll even allow you to filter the choices by where you live!
But that’s not all. Many will also provide you with the “best” hospitals and rehab facilities for your care, complete with rankings, too. No doubt they’ll steer you to the plan that suits you and your budget, dear consumer, the best. Have fun choosing. (Just be sure to make the right choice, will you, lest you be stuck paying a $105,000 cover charge for your cancer treatment.)
So they make websites. Quite expensive websites. Unfortunately, these websites might not save costs to our healthcare system, but heck, who cares? It's all about you, the healthcare consumer computer-surfer, remember? After all, they won't be built with the Goliath's money, mind you, but yours. Personal Health Records and informational sites. Tons and tons of them. Some better organized than others – some with pleasing color schemes and most with lots of smiling faces. And each of these sites will promise to house healthcare needs (and portions of your medical record) under one roof, provided you give your “permission.” For some, you can even grant other pharmacy, laboratory and hospital services to upload your medication, laboratory, and procedural information, too – all neatly organized. What's not to like?
But God help you if you make a typographical error or your name is a common one like John Smith (he'll need his Social Security Number and date of birth to differentiate himself from the other John Smiths out there – while providing yet another exposure for identity theft – but, hey, the information will just be used for healthcare – and maybe a bit of advertising). You see, unique identifiers are a challenge to healthcare databases. It’s tough to know you’ve got the right “John Smith” when databases are shared. The wrong “merge” and voila, you got a whole new set of preexisting conditions that the insurers can use to crank your premiums. Who will help rectify the situation? What about the other “John Smith’s” privacy? Oops.
True, Personal Health Records and informational websites can have answers to your questions. They have forums. They have information on your doctors and hospitals – like credentials and rankings. But these rankings are created by many, many sources: the government, marketing firms, and advertisers. Each of these ranking systems have significant limitations and use criteria that are non-uniform and only intermittently updated and almost never verified. (That, my friends, would take innumerable man-hours to maintain.) But they all claim they are the best at helping you choose your doctor or hospital with no proof as to their effectiveness. * Sigh *
Now is there a ranking that identifies the quality doctors based on the time they take with you, or if they answer your questions, or act as your advocate or evaluates your actual treatment outcomes? No. Instead, we are told that "quality doctors" are the ones that give aspirin 100% of the time after a heart attack, or prescribe beta blockers for heart failure. THAT, my friends, is just two of the ever-expanding 119 major measures that we should strive for! And these same rankings are often used for marketing of healthcare facilities. Heck, some hospitals with carefully collected quality assurance measures even pay to have their doctors “ranked” since their data always looks so good! All to help you, dear consumer, to make the right choice. After all, it is much easier (and politically correct) to implement e-health initiatives that hire more bureaucrats than to simplify the bureaucracy and redundancy by cutting unnecessary jobs!
Oh, and yes, they own all of the data. Your healthcare data.
That’s right, not you. Them.
And the Goliaths carry nary a liability concern regarding its accuracy – you saw that disclaimer, didn’t you? And don't forget, all of this data is no longer officially protected by the Health Insurance Portability and Accountability Act. Bits and bytes galore, all whirring this way and that for any number of eyes to see. All without any recourse or tracking capability and all at the speed of light. Because you, my friend, have authorized "sharing." But that’s not all. On some sights you’ll be targeted with advertisements to "empower" your healthcare choices. For many companies, this is the business model for their survival. So just how “secure” is your healthcare information if keywords you’ve entered are triggering the ads placed on your webpage? And although the Goliaths want to compare the security of banking transactions to healthcare transactions, are not the issues of identity theft real for both types of transactions? Correcting your widely disseminated “personal record” after it's been compromised is nearly impossible once the imprint of a preexisting conditions exists on your record. Good luck contacting Google to straighten that out.
The Goliaths, my friends, may soon become the Great and Powerful Oz of Healthcare, conveniently hiding their liability (and profit motives) behind a great electronic curtain called the Internet.
The PMR is not the EMR
But we mustn’t be too harsh. There are really good aspects to the personal health record and informational websites. Where else is there universal ability to transport your healthcare information between disparate institutions? Where else can you get a relatively unbiased search of information? Where else can you empower yourself with an avalanche of mostly reliable information and share experiences with total strangers who may have endured your same ordeal. But we mustn’t confuse the Personal Health Record, editable by all, as an Electronic Medical Record (EMR). The EMR contains the official transcript of your healthcare received. The EMR is the ultimate arbiter of healthcare delivery that is the undisputed king of records used in liability proceedings. As such, there is little incentive for physicians to maintain two sets of records. The Personal Health Record is just that: personal. It is NOT a health record. Sorry.
And if you want to have a Personal Health Record, you’d better not be too sick. If you can’t type or see, Personal Health Records and computer-driven healthcare might not be in your best interest, but there certainly might be a place for a caregiver to follow your healthcare delivery. Personal health sites leave a huge gap for services since they assume all "patient-consumers" use or have access to computers and will shop for “healthcare” like the latest dress or are physically and emotionally capable to use the sites as intended.
And what does this Goliathian healthcare look like on the ground? I'm just not sure yet. One only needs to look at the recent unfortunate recent circumstances of Senator Ted Kennedy to begin to comprehend the issues.
Imagine. Senator Kennedy comes into the ER with confusion, obtundation, and maybe not moving his right side very well. Did the doctors rush to Google and type in his symptoms? Oh, they could have. And they would have been met with a differential diagnosis of 870 different entries with AIDS, Creutzfeldt-Jakob disease, and inflammatory disease of the brain as the first three results after only 0.35-0.48 seconds. Hardly an accurate assessment, as we’ve seen.
And what about those hospital rankings to choose a hospital? Did the Kennedy's have a choice where he went first? Not really. He was appropriately taken to the closest facility. But more importantly as WhiteCoat has already pointed out, the family opted not to stay at that “Top 100” hospital, but rather elected to transfer him to an unranked hospital: Massachusetts General Hospital. So given all the different ranking systems out there, which ranking mechanism will you, dear “consumer,” use to make your choice of healthcare facility? Could it be that these marketing gimmicks called “rankings” might not have your best interests in mind?
And how about his diagnosis? Did a website help drill the hole in his skull and pass the biopsy needle in to his brain? Oh sure, I bet you could find pictures of how it’s done on the internet, but when it came to performing the procedure and delivering the care, where were Google, IBM, and Microsoft on this one?
Finally, when it came time to break the news of the diagnosis to Senator Kennedy and his family, were these corporate Goliaths in the room hold hands and lend support and nurturance? Hardly. Did the family consult the wellness bureaucrats to plan the next steps when anxiety was high and trust and respect are critical?
No, it was the Davids of healthcare – the doctors and their patients – that did the dirty, yet critically important, work together. It is the Davids that form the cellular basis of the healthcare system – the cornerstone upon which the entire dysfunctional system rests - not a computer, or a website, or a hospital, or an insurer.
And disease happens. It happens while doctors are filling out the 119 items on the EMR to keep their ranking. It happens while patients are typing in their website that redirects money and attention away from the front-line care. The doctor-patient relationship is threatened like never before. With fewer primary care physicians and more and more “physician” extenders, the word “doctor” has now been replaced with “provider.” Should we spend millions on information technology infrastructure while ignoring the resources required for the than the hands-on, “mano-a-mano,” aspects of healthcare that are so critically needed today? I guess the philosophical discussion comes down to what medicine is all about. Is it about the money? Or is it about the care of the patient?
Unfortunately, it’s probably about both, for if we run out of money, we can no longer care for patients. I acknowledge the Goliaths' potential to impose dramatic market forces to control costs if they could generate healthcare price transparency. But will the hospitals and insurers ever end their little profitable healthcare pricing collusion schemes and make their closely held data available for all to see?
But when I get sick, it’s going to be all about me. And I admit, when I get sick, I might turn to Google to show me some possible diagnoses, or to list side-effects or drug interactions that might occur with my medications, or to keep that list up to date, as long as my fingers will be able to pound on a keyboard. But despite how much information gets pumped to me, I will still need a doctor with experience to help guide me toward the best course of treatment for me – one who can cull through the morass and has seen and touched someone with my condition before. Knowledge, judgement, and experience trump mere information and marketing every time in healthcare.
While some information is important, websites won’t fill the patient care void in healthcare that exists today. Certainly, they'll fill a few gaps that exist. And perhaps our goal should be to strive for "concierge medicine at Wal-Mart prices" (h/t KevinMD). Will PMR's and EMR's and home monitoring services permit this? Where's the profit in that for all those Goliaths?
E-health initiatives, therefore, are one just one more tool for the patients, the doctors, and the marketers. And while Electronic Medical Records do improve efficiencies on many levels: data retrieval, billing and coding compliance, accounts receivable, etc., but they do not treat patients nor always have their best interests at heart. Does this Great and Powerful Oz really provide something that will save us? Or does he provide bells and whistles while medicine becomes less and less humanistic? For instance, do we really need daily complete blood counts and electrolyte measurements in our default admission order sets? Certainly the hospitals benefit with higher revenues. Or might less frequent labs suffice? How much has this single default order set cost our patients? How much has it saved in terms of earlier detection of infections? No one knows.
But we do know that a doctor sifting through pages and pages of Personal Medical Record information will have less time at the bedside. We do know that there will be legal exposures if that data presented is incomplete or incorrect. So the debate goes on. But one thing is for sure, before we spend millions and millions on websites that are still unproven to reduce costs or improve care, we better be damned sure that we’re spending our limited healthcare resources wisely in the name of “Computer-Driven Healthcare.”
Addendum: 11:30 AM CST 23 May 2008 - Matt's rebuttal is up. What'dya think?
Fabulous posot, and I look forward to the conversation.
My take is that wherever there is a relationship, an outsider will come in to profit from it. The money is not made within that relationship, it's made on the edges of it.
So businesses see kids trying to get into college and colleges trying to recruit kids - they then sell each side the services to make that relationship happen.
Same with healthcare. Patients and doctors have a relationship. So business are trying to capitalize on that by selling patients services to find and choose that doctor, and then selling (or more often regulating into healthcare) services that the doc must use in that relationship. In the end, though, its the relationship that is the important thing. And in that, there is no money.
PHR can be CRITICAL as records are purged after 7 years. If you don't have them yourself, well tough luck.
I know this because I needed an eyeglass prescription from 13 years ago (from before another eye surgery) so the surgeon could get the correct lens power for me. I contacted the folks that did the previous surgery, they had purged the records from their EMR since it had been over 7 years.
No that I know this is the policy I'm requesting all my records and keeping them myself; no one else has long term responsibility for them but me.
Well done doctor.
Matt's rebuttal is up, in case you missed it. What do you think?
Is the CMS site that he calls "high integrity" accurate, reliable, and verifiable and updated often? Is there a reason CMS has spent $1.9 million of tax-payer's dollars on advertising for a one day publicicity campaign? Could it be no one is using the site or it's not having the intended cost-saving or patient-shunting effect it was meant to have? Yep, sounds like considerable "Green Power" (as he calls it) to me! Given the way the data for the CMS site are collected, with hoards and hoards of quality assurance "specialists" (ah hem, their qualifications, please?) doing retrospective chart reviews, without regard to patient outcomes, I would suggest maybe our patients ARE NOT getting the best "bang for their buck" at all.
And what about those other limitations I mentioned, Matt? What about the privacy issues and disclaimers exonerating responsibility? How much have those sites cost our patients through tax revenues to produce and maintain them with incomplete or frankly inaccurate data? Please dude, I know yours a marketing website for e-health, but could we stick to the issues of real COSTS to my patients and CREDIBILITY?
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Dr. Wes -
Excellent post. Many great points, especially regarding the gross limitations on current PMR/EMR use, and the dangers of oversimplification in the marketplace.
Docs are indeed the "Davids" of healthcare, and any e-health tool should advance the relationship, rather than cluttering up the airwaves. For the most part patients (including e-patients who think of themselves as 'consumers') still want and trust docs to be completely involved in care.
However, although some e-health entrepreneurs are grasping at that wide sea of 'opportunity' presented by "patients as users", not all of us "assume all 'patient-consumers' use or have access to computers and will shop for 'healthcare' like the latest dress or are physically and emotionally capable to use the sites as intended."
Some of us get that we're talking about 10 percent of the population (half that initially) max. Even with rampant adoption spanning the next 10-20 years we're looking at 30-40 percent adoption rates, max.
After your thought-provoking comments at Health Management Rx I wrote this follow/up. It's even more applicable after reading this post. One of the major points is that we're making another error in assuming only patients and physicians are consumers in the evolving system, and e-health business models should address a wider spectrum of healthcare decision-makers.
Looking forward to your comments.
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