Inkwell: Authors and Artists
Paulina Borsook (loris) Fri 16 Dec 11 19:27
i shared this anecdote with <bbear> when he sent out his call for healthcare horror stories. but it might be useful to recontextualize here: i have many many doctor relatives. the wife of one of them had a major bicycle accident in a somewhat rural community. my relative ran to be with his wife at the site of the accident, supervised the transfer to the Big City where they live and the home of major medical centers, and hence to the hospital where she stayed for several days. in no case did anyone (not the docs, not the nurses, not the attendants, not the xray techs) ever show any sign of reading her charts --- as in, her right arm is broken, do not inject or jostle that arm. my relative commented that if he hadnt been there continuously for those three days --- and been a doc besides --- he has no idea how badly his wife's care would have been botched. i dont think apps or tablets or or any other e-anything would have made any of the healthcare professionals want to =bother= to demonstrate -care- and in a sense, do their job properly. his impression was that not only were they not reading the chart, they werent even seeing the patient as an individual, exhibiting diligence and curiosity about someone in their care. he did not come out of that experience feeling 'if only the staff had better access to wi-fi! if only my wife had been a more e-engaged patient!' the current healthcare system is so broken in so many ways, as wise folks like <bbear> can document in far greater depth and detail than i. but i am just not convinced that the injection of what used to be called IT by itself can begin to solve the problem of poor/shoddy/non-existent -care-. in an ideal world, maybe it might. but candide i am not... i realize i am harshing the mellow of our inkwell.vue guest --- and she should know there is no animosity directed towards her. yet i shall remain skeptical to my dying day of ITish solutions to lack of human caring...but then, i have never understood how the original rogerian ELIZA therapy bot worked for many people...
Jon Lebkowsky (jonl) Sat 17 Dec 11 05:13
I don't know that you're "harshing the mellow" so much as persistently misunderstanding what this conversation is really about. It's not about hospital IT or access to wifi. It's about empowered patients. Tom Ferguson focused on how the Internet facilitated a democratization of knowledge, so that patients could have more and better access to information about their conditions, and could have access to others with the same condition, and that this could be empowering. Also that physicians should and could be willing to see patients as informed, intelligent, enabled, and equipped to be actively engaged in the process of treatment, rather than passive objects of care. What you describe above is exactly the sort of thing we hope to address by transforming the view of the patient's role in the treatment process - and yes, it's always good to have a caregiver with you when you engage with healthcare, especially if you're really sick - and the caregiver should also feel empowered. Of course, there are a lot of issues. E.g. you could have patients clustering to share misinformation and create a condition of fear rather than mutual empowerment. Physicians can be irritated by patients who show up and say "I read on the Internet that..." and refuse to listen or respect the professional healthcare context. You can have hospitals and healthcare professionals that create worse issues than they're supposed to fix (http://www.safepatientproject.org/share_your_story.html). You can have bad data, garbage in garbage out, having an adverse impact on treatment. You can have physicians and nurses distracted by insurance requirements and various healthcare bureaucracies. We're not going to change healthcare overnight or make all of those issues go away. There are system problems and there are human problems to address, and participatory medicine tries to address them. Nobody argues that technology is a panacea, we just acknowledge that effectively deployed and used by patients and by healthcare professionals, technology can be helpful and powerful.
those Andropovian bongs (rik) Sat 17 Dec 11 07:59
Good lord. This stuff is about new tools that allow patients more information and more hands-on control of their own health in a climate that has become cold and impersonal. I'm never going to have a relationship with a GP like the one I had in the 70s, where we were neighbors and all knew each other personally. So I see this as an opportunity to take back some control of my own health. It's just a new operating system to learn, no pun intended. Learn it, and gain hands-on access.
Paulina Borsook (loris) Sat 17 Dec 11 08:59
jon, i do understand what the convo is about. am just pointing out that obe can be as epowered a patient as possible and still wont make a diff (which is why i brought up the example of my bike-accident injured woman) however i will bow out at this point
Nancy Finn (nfinn8421) Sat 17 Dec 11 09:00
This country currently spends 16% of the GDP on health care versus 6 to 11% in other countries which have universal health coverage, something we do not have. In spite of these expenditures, studies prove that our outcomes on many measures are not better, they are worse than the countries where they spend less. There is definitely something wrong with this picture. It is projected that by 2025 health care costs will represent 25% of the GDP and in 2050 it will be 37% of the GDP. These are scary numbers and the American public (patients) are ultimately footing these bills. e-Patients Live Longer focuses on providing guidance to patients about taking charge of their health care by having the right information at the point of care (or engaging an advocate who has that information when you are too ill to do it for yourself),and by having the right tools to manage chronic health conditions. I contend that when patients come to their health providers with full information,appropriate questions and an understanding about how to manage their health issues, The health care experience is better for the patient and more efficient for the provider. Technology in and of itself does not make things better. It provides enabling tools that hopefully will in the longer term bring down the cost of care and improve the quality.
Cindy Smith (clsmith) Sat 17 Dec 11 18:34
This al assumes the patient is well enough to be any of those things-- informed, engaged, etc. And my experience, as the spouse of a recently badly injured person is that, absent my presence, none of that is possible -- seriously, family/friends/social workers cannot be there all the time. It was a constant problem, just getting the staff reading what was already in front of them to be read. Time was usually the issue. I can't count the times I repeated the same information, each time to be entered faithfully into a computer apparently only for historical reasons. These were all caring, often selfless professionals who clearly wanted to do the right thing. I came away with nothing but respect for them, and very little respect for the support systems they relied on. Including electronic records.
Nancy Finn (nfinn8421) Sun 18 Dec 11 08:25
Electronic records are a mixed bag. Many are horrifically unfriendly to their users and very few of them communicate with other EHR's. This means that one of the most obvious benefits of the technology which is to always have information at the point of care becomes impossible. I agree with you, and in my own personal experience,the front line health care professionals: doctors, nurses, therapists, for the most part, (but not always,) are caring individuals who are working where they are because they want to help patients. However, the support systems (not technology but processes) that are necessary to keep things going are often weak and faulty. Finally and probably most important, when an individual is very ill it is essential that an advocate who is empowered and will speak up is there are much as possible to oversee care and help with managing the patient. Although that is often a daunting task, especially in situation where there is little or no family, it is a fact that the overworked, often underpaid health care workers who are assigned to the patient can barely do an adequate job. In health care we need a much larger cadre of volunteers who are willing to help It is impossible for a patient who is barely able to function to be empowered and engaged.
Jon Lebkowsky (jonl) Mon 19 Dec 11 05:04
Nancy, there's one aspect of the healthcare experience that we don't discuss much. Most of our conversations about the e-patient assume access to care, however an increasing number of citizens in the U.S. lack access because they don't have insurance, or have very limited coverage. How do we address the needs of patients who can't afford to visit a physician? Who can't cover basic healthcare costs?
Nancy Finn (nfinn8421) Mon 19 Dec 11 06:39
In my chapter on Patient Centered Care I discuss community health centers that are scattered throughout the country. These are free clinics established in the 1960s and allocated and state and federal funds help to pay for basic care to these under-served populations. the funds come mostly from Medicaid and from federal grants. these health centers provide ambulatory services and provide gynecologic services, family practice and pediatric care. At the bare minimum they offer wellness check ups immunizations, basic tests and treatment. They are often staffed by physicians and nurse practitioners who donate their time. Is this enough? No it is never enough and we need a better system of extending basic care to much larger populations some of whom have minimal coverage and in these economic times avoid seeking care because they do not have the funds to pay for the treatment after a diagnosis. In the long term this would save the system money because it would result in far fewer expensive ER visits that we all pay for in the end.
Jon Lebkowsky (jonl) Wed 21 Dec 11 11:01
I wonder to what extent people who really need care are self-diagnosing and looking at online resources, because they can't afford to see a physician?
Joe Flower (bbear) Wed 21 Dec 11 12:22
Sorry for being away so long: the trip to our winter writing retreat in Baja was longer and more arduous due to weather than we had supposed and then yesterday we had a little medical emergency ourselves. Turned out to be no big deal, but did involve us in experiencing a bit of the Mexican healthcare system (and most of a day to run up to La Paz and back).
Joe Flower (bbear) Wed 21 Dec 11 12:29
A key theme of the discussion above has been: "Empowered, engaged patients do better!" "But most of the time it doesn't matter how empowered or engaged you or your advocates are because everybody ignores you anyway!" So we get a picture of even the empowered, engaged patient swimming upstream against a system that is oriented Let me add this thought: As in anything else, the power of the individual (for instance, as a consumer) does not count for much. But the power of the individuals as representative of the great economic forces that support the business, the institution, the paychecks of the people working in it, counts for everything. In the insurance-supported fee-for-service system, nobody's paycheck really depends on figuring out how to make the system work best at every level for the ultimate consumer, the patient. We will absolutely see this behavior change, and all the supports available to help it change, when the system makes its living in a different way.
Jon Lebkowsky (jonl) Wed 21 Dec 11 13:10
Joe, what are your thoughts about the "different way"?
Nancy Finn (nfinn8421) Wed 21 Dec 11 14:17
To first answer Jon's question about people using the Internet to self-diagnose: In this economy when many people are using every device possible to avoid spending anything extra, I think people are using the Internet more and more to find answers and help determine which way to turn when they really need care. PEW research http://www.pewinternet.org/Presentations/2003/The-Online-Healthcare-Revolution .aspx that provides the data to indicate that the majority of Americans turn to the Internet for health information. Whether they are self diagnosing and finding alternative treatments, I believe, depends upon the seriousness of what they are dealing with and whether they still have health insurance. Most people who are unemployed and have no health insurance are more inclined to avoid the health care system because they cannot pay out of pocket. Even those individuals who have health insurance but are under-insured, (which is the majority of Americans,) are avoiding costly procedures and tests because they cannot afford the co-payments. As much as they can, they are not self-diagnosing, but they are putting off today, health issues that they might have to face later. This is a serious issue for everyone because these health issues may become considerably more serious with the passage of time.
Nancy Finn (nfinn8421) Wed 21 Dec 11 14:42
I do not agree with Joe that no matter how empowered or engaged you are everyone ignores you. The majority of health care providers out there are caring individual who have chosen this profession because they want to heal and help people. Of course like everyone else they want to make a living wage for their time and efforts. But I think it is extreme to say that patients, whether they are empowered and engaged or not are ignored. There is no question that the system needs radical change in the way health care providers are compensated for their work. We all know that fee for service does not work on many levels. I do, however, believe greater patient participation and presence cannot do anything but impact and benefit the system in a very positive way and help to bring about some of the financial changes that the system requires.
Joe Flower (bbear) Wed 21 Dec 11 15:00
> what are your thoughts about the "different way"? One of the key things that differentiates my thinking from almost everyone else that I have seen is this: Everyone agrees that the way we pay for healthcare doesn't get us what we want. Then everyone says, "Here's this other way. Do it this way." No one expects that we pay for our food all one way, or housing, or electricity. There are many options, many different ways to fit the thousand different niches. In healthcare, we all have (mostly) the same desire: Access to all that the system can offer, in ways that we can afford. But we are in many different life situations, by age, health condition, employment status (and kind of employer), and so on. And the providers of healthcare can be equally varied. There are many different ways to escape from (or even just mitigate) the strictly insurance-supported, commodified, fee-for-service payment system. We don't have to shift the whole system away from it, just enough that the institutions strongly feel that they are competing to provide the ultimate customer (the patient and patient's family) the best health and healthcare for the least money. Some of these ways include: o bundled payments with full published prices for big things (like, a replaced hip costs X dollars, soup to nuts) o capitation (like Kaiser) backstopped by the right quality measures o primary-care-based alternative quality contracts (with all the money going through the primary care providers, backstopped by outcome and quality measures) (see: Blue Cross/Blue Shield of Massachusetts) o warranties and guarantees (Yes, seriously. Why not?) o stripping the health plans of their ERISA immunity from malpractice suit (so that they have take real financial risk for bad outcomes) o providing employees with full "medical home" primary care clinics in the workplace for free from dime one o paying primary care providers directly for a specific panel of primary care services, instead of through insurance companies (keyword: "Direct care") o paying providers as teams, based on the health outcomes of their panel of patients, rather than as individuals based on the volume of services (cf: Alaska Natives Health Service) o focussing special services on the "frequent fliers," the 5% with complex chronic problems who consume 50% of the healthcare resources (cf: the Atlantic City Special Care Center, the Camden Healthcare Coalition) o paying for outreach teams that work with primary care practices (cf: the Vermont Blueprint) o carefully titrated HSAs and high-deductible health plans so that the customer/employee/patient has just the right amount of financial risk for making smart healthcare decisions (along with the right kind of support to make better decisions and to mitigate their health risk) [Can you tell I've been writing a book about this?] Every one of these things (and many more besides) removes the provider from the "providing more billable things" conundrum and focuses them on "help the customer become and stay healthy." All are do-able within our current system. All can be tweaked to help the poor and the unemployed or underemployed; all can be subsidized. The real key is not who pays, but what you pay for, how you pay, and whom you pay.
Joe Flower (bbear) Wed 21 Dec 11 15:03
> I do not agree with Joe that no matter how empowered or engaged you are everyone ignores you. Neither do I, because I didn't say that. I was characterizing (exaggerated ever so slightly for vividness) one of the two sides of the discussion in the last 20 posts.
Nancy Finn (nfinn8421) Wed 21 Dec 11 18:09
Joe, I do agree with everything you have described above. You do obviously know this area and your clearly stated ideas and examples will hopefully come to fruition in the New Year. I believe, that the empowered, enlightened, engaged, educated e-Patient can and should be a part of this conversation and of the effort to bring about some of these changes so that the end result reflects what is best for the patient, somewhat for the provider and not just for the system. That is a tall order given our current political climate but with forward thinkers such as yourself and level-headed leaders such as Jon this too can happen. Thank you for the opportunity to have this discussion with you both.
Gary Greenberg (gberg) Thu 22 Dec 11 04:16
Joe, that's a really interesting list, and the idea of a smorgasbord probably fits our fractured politics real well. I would add to it killing the private insurance companies. As a provider (and I;m sure every other provider in a fee-for-service setting will agree), I am constantly amazed at the waste of that system, whose overhead, according to people whom I trust on these things, is somewhere between 200 and 300 billion dollars a year. And that's not counting the time and staffing that goes into wresting money (and accountability) from them. Their job is to hang on to our money for as long as they can, and they are really really good at it. As for this >The majority of health care providers out there are caring >individual who have chosen this profession because they want to heal >and help people. Of course like everyone else they want to make a >living wage for their time and efforts. But I think it is extreme to >say that patients, whether they are empowered and engaged or not are >ignored. I think that's probably true, although it is only a majority and by no means everyone. Especially when you consider that most people chooe the medical fiedl when they're very young, and before they are fully educated, which means that you get a mix of idealism and cluelessness that can be a problem down the road. And that education still doesn't include enough about how to deal with patients as people, nor does it do much to teach physicians how to use (as oppose to abuse) power. I'm sure there are pockets of practitioners who are really happy about sharing power with their patients, but they have yet to arrive out here in the hinterlands. LIke the doc, a young guy, who, having seen one elevated blood pressure reading of mine, and with no other information about me or my history (years and years of normal bp), said "Well, I'm not going to put you on blood pressure medication yet." Which is simultaneously good practice (i.e., don't jump the gun) and bad (i.e., watch your verbs.) Taht and the fact that "living wage" is not exactly the expectation of your average health care provider, especially not one with six-figure student debt, means that it's going to be a long slog to something better.
Joe Flower (bbear) Thu 22 Dec 11 09:56
> the idea of a smorgasbord probably fits our fractured politics real well. A key question underlying my book is: Can we reform healthcare _without_ having to win a massive political battle not only now but perpetually? In other words: Is there a change path that will stick? > I would add to it killing the private insurance companies. In other words, "single payer." I know this is controversial on the Well (as elsewhere), and I have a long discussion of it in the book. I have come to the conclusion that while "single payer" might be a good idea, it is neither necessary nor sufficient for reforming healthcare, and can be a huge distraction and energy sink into political battles. What _is_ necessary is much stronger controls on health plans, and alternatives to health plans. Some of the alternatives I sketched out above. _Any_ system that does not pay fee-for-service will lessen the income and power of the insurance companies, since they make their living by taking a percentage of the money paid through them as premiums. Key controls include: o ending the ERISA immunity (as I mentioned) o enforcing the MLR (medical loss ratio) rules in the PACA, which force health plans to return 80% (or 85% for large plans) of the premium dollar in payment for medical resources a lot of your waste goes away right there, and it doesn't really matter what they do with the other 15% or 20% o enforcing the end of the "pre-existing condition" ban in the PACA - health plans must take all comers, and must pay for all covered conditions o criminal prosecution of companies and their executives for patterns of breaking their contracts and refusing payment for things they have contracted to pay for, and have approved payment for o The "Swiss Rule:" Health plans in Switzerland must pay _all claims_ within 20 days, no screwing around. If they seriously believe they are being defrauded, they can pursue the same legal remedies as any other company, but they cannot withhold payment We have to tame the insurance companies or put them out of business. Taming them is a lot more politically viable. It's easy to attack "single payer" as a "socialist" government takeover. It's not so easy to campaign on the virtues of allowing health plans to defraud, impoverish, and kill people.
Jon Lebkowsky (jonl) Thu 22 Dec 11 18:30
A new Inkwell conversation started today, and Nancy had agreed to a two week conversation, however we still have momentum, so feel free to carry on. Meanwhile many thanks to Joe and Nancy for a great two-week exploration of the e-patient's world and the future of healthcare.
Gary Greenberg (gberg) Fri 23 Dec 11 04:23
>We have to tame the insurance companies or put them out of business. >Taming them is a lot more politically viable. I am sure that is true. And while I think the idea of criminal prosecution is a dandy one, for the most part that taming will take place not with whips and chairs, but with nuggets and praise. In other words, through regulation by captive agencies. Corporations, I think, will always be better at finding their way around regulations (especially when they in effect write the regulations) than regulators will be at controlling corporations. For instance, I have not received any payments from Blue Cross since about September. Why not? Well, somehow the wrong tax i.d. nbumber got associated with my provider number, which ended up triggering a rejection code referring to "provider address incorrect." Which they sent to me at, you guessed it, the provider address I had supplied, which was of course correct. I figured that out with the help of the company rep in October. The solution was to create a new provider number. I won't bother telling you what kind of chaos that set off, only to poitn out I still have not gotten paid. Meantime, someone at Blue Cross is getting paid to sort this out, which helps them justify their rate hikes, and all the while they're holding onto my money. And then there's the company that United HealthCare pays to contact me every time I submit a claim to UHC, offering me "expedited payment" if I agree to a discounted fee. They'll trade 20 percent of my fee for a 10-day increase in payment. But the letter they send is worded very cleverly to make it seem like this is the only way you'll get paid, and indeed if you don't respond, they will continue to send letters and faxes and even make phone calls until you call them back and say you're not interested in their extortion. This scam must work--UHC pays this company to run it, but clearly it increases the cost of health care. Point is, they companies are only doing what companies do: ensuring their profit, which in the case of health insurance means holding onto money as long as possible. It's hard to imagine regulations or even laws that will stop this from happening. A market of nonprofit health insurers might work, but as long as they are for-profit corporations, I think they're gonna waste a lot of dollars and make people nuts in the bargain.
Joe Flower (bbear) Fri 23 Dec 11 06:24
Very interesting. I had not heard of that second trick. What kind of doc are you, Gary? You are certainly correct that regulation is more problematic than simple elimination. The kinds of regulation that will work best are the big simple ones, like rate review, the MLR cap, and eliminating the ERISA immunity, rather than micro-regulation. As for your Blues story, once again it's all about incentives. There is no downside whatsoever to the Blues to be late in paying, whatever the reason or excuse. None. And all kinds of upside. As long as the system is built that way, that's what we'll get. But I also see no sign that non-profit health insurers are much of an answer. I see a lot of bad behavior by many of the Blues, for instance, many of which are still non-profit. Andrea can tell you stories about the Blues of Michigan, for instance, and I think they are still non-profit.
Jef Poskanzer (jef) Fri 23 Dec 11 17:45
Once we prosecute a couple of health insurance companies and hospitals under RICO, and confiscate them, I figure the rest will fall in line pretty fast.
Nancy Finn (nfinn8421) Sun 25 Dec 11 09:42
There's been a lot of activity and some deals pending with insurers teaming up with hospitals kind of like the Kaiser arrangement. What is your take on that type of arrangement and does it solve some of these payment issues? Does this type of arragement mean better or worse care for the patients? I have mixed stories from patients at Kaiser.
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