Archive for the 'Health & Medicine 2.0' Category



11
May
10

another volley in the healthcare revolution

The Washington Post is reporting today that a company called Pathway Genomics on is going to start selling through Walgreen’s 6,000 drugstores an over-the-counter kit for testing certain genetic traits.

Beginning Friday, shoppers in search of toothpaste, deodorant and laxatives at more than 6,000 drugstores across the nation will be able to pick up something new: a test to scan their genes for a propensity for Alzheimer’s disease, breast cancer, diabetes and other ailments

The test also claims to offer a window into the chances of becoming obese, developing psoriasis and going blind. For those thinking of starting a family, it could alert them to their risk of having a baby with cystic fibrosis, Tay-Sachs and other genetic disorders. The test also promises users insights into how caffeine, cholesterol-lowering drugs and blood thinners might affect them.

Yeow, that’s going to set off a firestorm! A couple of years ago when companies like 23andMe began to offer tests to consumers the California and New York public health departments and the FDA tried to shut them down. They issued “cease and desist” orders and threatened to charge them with violating various violations of business practice laws. In fact the kerfuffle has already started.

The Food and Drug Administration questioned Monday whether the test will be sold legally because it does not have the agency’s approval. Critics have said that results will be too vague to provide much useful guidance because so little is known about how to interpret genetic markers.

The medical profession is conservative with good reason: lives are at stake. But in all this, in my opinion, is also a component protection of professional prerogatives. Professions in any field don’t give ground to the ordinary person easily.

I’ve had some experience with this. When I started in the cancer field 36 years ago we had two sets of printed literature: one set for the lay public and another for doctors and nurses. You were risking getting fired if you let a cancer patient get hold of the professional literature! The reasons then were the same ones physicians express now about internet information: “they (the public) won’t understand what it means; they will misinterpret it; they’ll suffer anxiety; they might make bad decisions about treatment.” But the internet irreversibly smashed the barrier to access to professional medical information. Doctors are still fighting a rear-guard action and complaining mightily about how it was better in the old days when they were the exclusive source of medical information. I’ve commented on that before.

I’m not dismissing the concerns. No doubt there will unfortunate incidents around these new tests. But what gets me is how unwilling the medical profession is to see the revolution of information that is underway and to rethink the medical paradigm. My pleas is for physicians to start — as a profession — to work on a more equitable and flexible basis with the citizens who want a greater and more equal role in their medical life. We’ll always have a doctor/patient relationship, but I think its going to be much different in the not far distant future.

The internet isn’t going away; instead it’s going to go much, much deeper into our health lives. And genetic tests are not going away either. Like it or not, deep personal knowledge about what lurks in our genes is on the way. Why isn’t the medical profession working with entrepreneurs, patients, futurists, and internet gurus to anticipate what’s coming and do something positive that works for everyone? There’s much, much work to be done, and soon. Without a collaborative movement of innovation and adaptation we’re going to suffer through repeated, time-wasting bouts of friction.

12
Apr
10

books that changed my life

My wife and I are moving out of state next month, so we’re unloading stuff we don’t want to transport. I’ve had to look at my book collection and cull the ones I can live without. In the process I realized there’s a small set of books that have framed my way of looking at the world and kindled passions that will continue the rest of my life. They’re the books that have old yellow stickies sprouting from between the pages, yellow highlights and scribbles in the margins. I donated about 60 books to the local library, but these I’ll keep to the end.

Eric Jantsch, The Self-Organizing Universe: Scientific and human implications of the emerging paradigm of evolution, 1979.

Actually, I found this book after reading James Gleick’s, Chaos. Chaos was an unusual best-seller in ~1987 I guess because we all experience “chaos” (in the colloquial sense) in our lives, and people evidently were looking for some insight. A lot of readers never finished the book because it explored the physics and mathematics of chaos, not necessarily the common term. Nevertheless, Chaos made the term “butterfly effect” part of our vernacular. It was a good introduction to chaos theory, but by the end of the book I was wondering: “With chaos being so pervasive in nature, how is it we see order and organization?” Jantsch’s book tackled that conundrum.

Basically, Jantsch presented a framework for how the world organizes via hierarchical systems from the fundamental dynamics of the micro (atomic forces, molecules and basic physical properties) through simple living entities, complex organisms, ecosystems, and social systems. It is a set of concepts that are a theory of organization from basic dynamics up through the most complex things we know, living systems and our own societies. Here’s how Jantsch defines systems:

The notion of system itself is not longer tied to a specific spatial or spatio-temporal structure nor to a changing configuration of particular components, nor to  sets of internal or external relations. Rather, a system now appears as a set of coherent, evolving interactive processes which temporarily manifest in globally stable structures that have nothing to do with the equilibrium and solidity of technological structures.

The mind-blowing idea that came through in this work is that there are processes that, when fed by external energy flows, can become so stable that we think of them as things. Especially in living systems, a lot of things are really just processes that persist as long as the right conditions exist and only that long. They’re called “process structures.” It looks like an oxymoron, but you can perceive some persistent processes as structures. When you get that, it tends to alter your notions of permanence and change. Some complex systems such as living organisms persist during what we call life, but when the sustaining conditions end the processes collapse and it’s all over.

Humberto Maturana and Francisco Varela, The Tree of Knowledge: The biological roots of human understanding, 1987.

The authors of this book set out to show that cognition is not simply our eyeballs and brain somehow internalizing what’s “out there” but is absolutely contingent on our biological structure and processes. Moreover, cognition is a result of our experience and interaction with other people through language. Their notions are pretty trippy. The book’s cover art is a Salvador Dali painting. But the key for me is that they build their argument for how “knowledge” works from the ground up, starting with processes of self-organization at the molecular level. From there they describe how living things come about through a process of  “learning” clear up through humans with our shared knowledge and shared cognition.

Maturana and Varela’s key idea here is autopoiesis, self-organizing systems similar to Jantsch’s ideas.

Our proposition is that living beings are characterized in that, literally, they are continually self-producing. We indicate this process when call the organization that defines them an autopoietic organization. […] The most striking feature of an autopoietic system is that it pulls itself up by its own bootstraps and becomes distinct from its environment through its own dynamics, in such a way that both things are inseparable.

Werner Loewenstein, The Touchstone of Life: Molecular information, cell communication, and the foundations of  life, 1999.

Backing up all the way, Loewenstein goes about explaining the organization that enables the complexity of living things by starting with entropy and information theory. You can’t get more basic than the laws of thermodynamics!

Neither Jantsch’s or Maturana and Varela’s books deal in detail with how information in chemistry figure into their notions of self-organization, but it’s there. Loewenstein makes the idea of information the theme of his book and caries it through from the idea of macromolecules clear up through cells, intracellular information exchanges, inter-cellular communication, and special information structures like neurons. But what I took away from this treatise is that the molecular structures at the cellular level are information devices as surely as the laptop I’m using to write this post. We’re so used to thinking of information in terms of human language and symbols that it seems strange to think that the conformations of proteins, DNA chains, “messenger” RNA and the intricate interactions among them are just as informational. But the robust and growing science of bioinformatics is based on just such ideas.

Dennis Bray, Wetware: A computer in every cell, 2009.

Actually, I’m just finishing this one. It’s a very interesting look at the internal informational working of cells that give these basic units of living things a capability of awareness and appropriate responsiveness that deserves more attention and respect. Cells aren’t just bricks in the wall; they’re participants in some astute biology. Wetware brings together in the cell Loewenstein’s molecular informational processes and Maturana and Varela’s philosophical views of life processes as forms of cognition and learning.

What runs through all these books is the idea that the universe’s fundamental properties and rules allow the emergence of processes of great complexity; complexity sufficient to reach the level of life and at least one organism — us — with the capacity for self-awareness and splendidly subtle thought. That’s a truly amazing range of possibilities based on some very foundational laws. How this is possible is a chain of events that we can only partially explain at this point. The rest of the story requires details we’re only getting a glimpse of right now. It’s certainly a set of riddles that will keep me fascinated the rest of my days.

27
Mar
10

do patients need doctor navigators to use the internet?

In the March 25 New England Journal of Medicine Drs. Pamela Hartzband and Jerome Groopman of published an opinion piece titled “Untangling the Web — Patients, Doctors, and the Internet” in which they expressed a lot of concerns about how the internet is putting patients in touch with a lot of questionable information about disease and about how it is changing the doctor-patient relationship in an adverse way.

Since, overall, my views are about 180 degrees in the opposite direction, I’d like to quote some of their remarks and comment on them. (I recommend reading the full article so the context isn’t neglected.)

Information traditionally flowed from doctor to patient; the physician described the genesis and course of a disease and the options available for treating it. Often, pamphlets were provided to reinforce the doctor’s explanation and advice. The patient might then receive additional input from family and friends, usually in the form of anecdotes about people who faced similar clinical situations.

I can only say from my experience that the first sentence about information flowing from doctor to patient is pretty ideal. When I started working at the community level for a large national cancer organization in the ’70s there were doctors who not only didn’t explain the disease well but there were some who chose, on the basis of their judgement about the emotional frailty of the patient, not to tell some patients they had cancer. They’d tell a spouse or adult child perhaps. Fortunately, things have improved and, hopefully, the “don’t tell” practice has been replaced by informed consent. Still, I think for many situations the amount of information going to patients is limited by the short time allocated to face-to-face interaction with doctors. I am a Kaiser Permanente client. They have implemented email to doctors, online lab results, and an online information resource. The docs don’t give full explanations unless you press them on it.

Other patients whose diseases have no ready cure are drawn to chat rooms and Web sites that may make unsubstantiated claims — assertions that macrobiotic diets cure aggressive lymphoma, that AIDS can be treated with hyperbaric oxygen, that milk thistle remedies chronic hepatitis, and myriad other fallacious claims. Falsehoods are easily and rapidly propagated on the Internet: once you land on a site that asserts a false rumor as truth, hyperlinks direct you to further sites that reinforce the falsehood. Material is perceived as factual merely because it is on a computer screen. We sometimes find ourselves in the uncomfortable position of trying to dissuade desperate and vulnerable patients from believing false testimonials. Doctors may be perceived as closed-minded, dismissive, or ignorant of “novel therapies” when they challenge such Internet rumors.

Firstly, there is absolutely nothing new about charlatans and doctors who have been peddling snake oil and gimmick cures for generations. Again, when I went to work in cancer control my organization had a major effort to combat “quackery.” Many, many cancer patients were getting all kinds of bad advice and misinformation from naturalistic health magazines and other sources. (For a thorough tour of the quackery hall of infamy, see Dr. Steven Barnett’s site Quackwatch.) People by the thousands were going to clinics in Mexico for cancer treatments no responsible doctor would perform. This was rampant decades before the internet. There was an epic, nationwide legislative battle over Laetrile, the marketing name for amygdalin from apricot pits. Despite the best efforts of medical and public health organizations, especially in California, Laetrile production was legalized in 27 states . The arguments about “freedom of choice” from the ’70s seem to have echoed down the decades and have turned up again in the rhetoric against health reform, especially in the condemnation of  comparative effectiveness determination.

Secondly, even highly authoritative institutions have to change their tune once in a while. When I joined cancer public health in the ’70s the medical community almost universally rejected the idea that food and nutrition had anything to do with the prevention of cancer. People who talked about a relation between nutrition and cancer were sneered at and called the “fruits and nuts” crowd. Thirty-five years later as I approached retirement I had to chuckle inwardly many times about the current enthusiasm for the view that diet and nutrition are key to the prevention of much cancer. These days ya gotta eat your greens and grains!

Thirdly, doctors themselves are not always reliable sources of informaiton. That’s why we have second and sometimes third opinions. Drs. Hartzband and Groopman cite anecdotes about people who believe unsubstantiated information from the internet and suffer anxiety or waste doctors’ time. But I think most of us who have been around a few decades have our own fist full of stories from our own experiences or those of friends and acquaintances where doctors have failed to diagnose something or misdiagnosed situations, where lab tests have been wrong or complex treatments have been bolixed up in a hospital. I think the public knows all too well from well-publicized reports about medical errors by the Insyitutes of Medicine that the medical system itself is far from fault free. With regard to health it’s a risky world, even in the bosom of the medical establishment.

The article concludes:

As physicians, we are struggling to figure out how best to use this technology in the interests of our patients and ourselves. Although the Internet is reshaping the content of the conversation between doctor and patient, we believe the core relationship should not change. A relative recently asked us, “What can you possibly learn from your doctor that is not available on the Internet?” We suspect we’ll hear such radical sentiments increasingly in the future. Knowledge is said to be power, and some of the past imbalance of power between patient and doctor may be equalized. But information and knowledge do not equal wisdom, and it is too easy for nonexperts to take at face value statements made confidently by voices of authority. Physicians are in the best position to weigh information and advise patients, drawing on their understanding of available evidence as well as their training and experience. If anything, the wealth of information on the Internet will make such expertise and experience more essential. The doctor, in our view, will never be optional.

Uh, count me among the radicals. Let me say that the doctors are not totally negative about the internet, but their overall conclusion is that every patient should vet all their information through their physician. It sounds like they’re saying — like other professionsals who’ve had their domain disrupted by the internet — we’d all be better off if the internet went away and we could return to the status quo ante.

I’m just here to assert that that’s just not going to happen. The genie has been out of the jug for years and it’s not going back in. The Pew Internet and American Life Project has been documenting for years now the growing reliance of the public on the internet in health matters. Doctors just don’t seem to get it that there are needs that they’re just not satisfying. The use of digital media for health information and support is only going to increase, and rapidly.

My position is not that doctors are somehow unnecessary. However, I do believe that ordinary citizens are capable of knowing much more and doing much more about their own personal health and digital systems are an evolving platform for that. And after the so-called “health reform” slugfest we’ve been through I’m even more convinced that we all need to be more autonomous. We can’t continue to depend on a cabal of politicians, doctors, hospitals, insurance and pharmaceutical companies for our health. It’s just too important.

My suggestion to physicians is, instead of promoting a somewhat idealized notion of the doctor-patient relationship unsullied by the internet, why not work with citizens, professionals, and organizations to make the internet a better platform for the public and for doctors and patients to work together around their health issues? There are many support measures that can be undertaken. If docotors are worried about accurate information then why not build a comprehensive, evidence-based, easily accessible, user-friendly information resource? Medpedia, a project started by a consortium of medical and public health schools, is an interesting and constructive exercise along this line. Only thing is, the site is not public-friendly and so far the effort appears not to have attracted much involvement from anyone but professionals.

The concern about people not being able to critically evaluate health information is certainly legitimate. In fact, evaluating ALL internet information is an issue. But where is the support system for helping people learn how to do that? Why don’t doctors and organizations get busy spelling out some guidelines for evaluation and get them disseminated through many channels? That would be constructive and doable.

There already is a kind of parallel world of information and tools starting to envelope the health sector. (Tip: If you think the internet is something, check out the apps in the iPhone App Store supposedly intended for medical professionals but perfectly downloadable by anybody.) It’s like the way the blog-o-sphere enveloped journalism. After a lot of pining for their old, defunct newspapers, more far-thinking journalists have learned how to work with digital media and to reclaim their futures. Something similar is happening in medicine and, hopefully, perceptive medical professionals will learn how to work with it rather than try to will it away.

07
Mar
10

Health paradigm for the 21st C, part 2

Okay, Part 1 of this post was precipitated by the Society of Participatory Medicine’s request for ideas about what members would like to see them do. I talked about my take on the whys and wherefores of participatory medicine. This post is a list of eight activities I’d like to see supported by the Society for Participatory Medicine:

1. Develop an actionable plan for the goal of enabling each individual to become his or her own primary care authority for 90%-95% of health incidents.

Primary care docs want to go specialist because it pays more, so why not elevate the individual to the primary care provider and boost the physician to the role of spcecialist involved as needed? A few months ago during the health care debate on The Health Care Blog I saw a remark (by a physician, as I recall) that about 80% of health events are handled by the individual: cuts and minor trauma, headaches, colds and flu, aches and pains, nutrition, supplements, upset GI, menstral issuses, and on and on. The “drugstore” often the supply center for first-line of public treatment. What if that percentage could be elevated to with the right tools and support to 90% or 95%?

2. Develop a plan for building well-developed, well-funded information support systems specifically to support lifelong personalized health learning and decision making.

The internet is little more than a platform for informaiton storage and cheap distribution with content kluged together from unrelated sources.  However, people have already adopted the internet as a primary source for health information (Pew Internet Surveys). But so far there is no well-funded health resource base specifically designed to achieve anything like the goal above. The internet is a hodgepodge of sites and information of variable quality. WebMD and other commercial sites provide general content as part of their marketing platfrorm. Wikipedia is one crowd-sourced way to compile informaiton, but its quality has been challenged and the whole enterprise criticized. Medepedia, with content from academics from reputable institutions, arose pretty much to be an authoritative alternative to the noise of internet health information, but it’s primarily a reference work and does not seem to have figured out the public involvement part. There are thousands of nonprofit and government sites with bits and pieces of information, but there is no sign of a national commitment to an architecture designed to empower the public with knowledge in a person-specific or engaging way. The only site I am aware of that seems withing striking distance of the comprehensiveness of necessary is the National Library of Medicine.  Their Mediline and PubMed resources might be a precursor to a more innovative way of supporting personal medicine.

The information from a well-designed and well-networked system should contain a mechanism that helps everyone understand what medical information is “evidence-based” and what the certainty level  of current evidence is. The substantiation of information should be on a dynamic, constantly-updated basis. The system should also help people learn that scientific process works toward greater certainty over time and grey areas with less than 100% proof are a necessary part of understanding medicine.

3. The integrated health knowledge network suggested in iten 2 should take a systems approach to human biology and medicine.

In the 20th century the human organism was disassembled for study by segmentation and reductionism. Specialized areas of medicine, nonprofit organizations, and governmental expert agencies took off in their own directions too. The result is a very fragmented picture of health that still dominates today. Knowledge supporting personal health engagement should put the puzzle of health together. The knowledge base of health and life education should follow guidelines that support clarification of how various sub-systems of the human organism play a part in the function or malfunction of the whole.

4. The approach to participatory medicine should be founded on the principle that learning about health is a lifelong matter.

Information should be communicated and made available on an as-needed or just-in-time basis throughout life but within a cohesive systems framework. As I pointed out in an earlier post, parents are beginning to accumulate and electronically record information about children at birth. With the cost of full genome sequencing plummeting it is likely that the process will eventually become routine at birth. It does not seem out of the question that health knowledge can start at birth with a full family genome and health history as a basis for baseline health assessment and risk estimation.

From the outset, children are curious about their bodies and many teachable moments are possible if appropriate information is provided in a personalized, situation-specific way. A whole range of age-appropriate information should utilize current and future technology to find innovative ways of interfacing health information with many learning opportunities throughout life. Games, avatars, social networks, and virtual environments could be employed to engage various groups. People cannnot and need not become experts in all aspects of medicine, but over time they can become experts about themselves and the health matters that are issues for them as indicated by genomic data, family history, race and cultural variables. Needless to say, a health support information system will need to have as its mission staying abreast of and innovating with emerging technology.

5. Facilitate the evolution of an open sytem of quantifying sensors and devices that measure many aspects of bodily function, health status, fintess, and consumption that can be seamlessly integrated with the knowledge network, EHRs and informed by personalized health models.

The problem with life is that we are born without a “dashboard” for our bodies and with no operating manual. When health problems arise the symptoms such as pain, swelling, and other sensations are often too late to prevent acute illness. And our bodies provide few perceptible clues about the percursors of chronic conditions.

Health 2.0 activity has shown that there are many entrepreneurs eager to supply devices and services related to a personal approach to health. But technology standards committees need to be established or coordinated so that devices and data supporting participation can avoid what has happened in the electronic medical record industry. Interoperability and integration are essential, and the particpatory movement will be inhibited if these characteristics are not incorporated from the outset. Open data standards, open applications, and open media standards are necessary to put together the systems of communication, data recording and transmision, security, and social networking that are sub-systems of the greater vision.

The price of admission for entrepreneurs for participatory medicine should be open standards all around. Consumers should be advised not to support products that cannot be integrated with other components of the greater system (motto: “Homie don’t play ‘dat”). An encouraging development in this regard is the Open Mobile Health Exchange . Nevertheless, ongoing advocacy in needed to keep standards open.

6. Drive a counter-culture movement that encourages the US population to reset its expectations of the market economy from tollerance of the current state of health irresponsibility to one of health-benefit.

The market system in the US is health-indifferent; it is not accountable for focusing on consumer products that are designed to exploit basic cravings regardless on long-term personal or societal health burdens. In fact health corruption and health correction are complementary streams of income. Billions of dollars are spent on the design and marketing of products that contiribute to illness only to be answered by products and services marketed to compensate and bring us back toward health. It’s an amazing wealth engine where the right and left hands wash each other.

The weird thing about health “responsibility” in US society is that, with regard to food and drink, only consumers, not producers of goods, are considered responsible. If we over-consume a product designed and marketed to maximize our consumption, the producer is not held accountable. That’s the way it used to be with tabacco, but we changed the preception of responsibility about tobacco between the 1970s and the end of the last century.

A similar cultural change is needed about food and drink. We have a start;  producers of suggary cereals and high fructose corn syrup drinks have been criticized for marketing them to children. Similar accountability — or at least  social scorn — is necessary for other consumables. Producers have gotten away with saying, “Hey, we don’t force you to drik all that corn syrup. It’s your fault, not ours.” Perhaps as the extreme cost in dollars to US society from obesity and its consequences generates even more pain we’ll be less willing to swallow the denial of culpabiity that the marketplace hides behind.

7. Advocate for the funding developemntof human biological system models that can be personalized so that a constant stream of information may be analyzed and used as a source of near-real-time feedback about our health status and behavior.

We need sophsticated human systems biology and computer health models based to the best scientific information. They should be designed so that health data from our genomes, family history, lifetime health history, and from daily activity can be combined to form a personalized profile or algorithm. Our own model — embodied perhaps as an avatar — could be constantly available to interpret data and give us feedback or status reports. Such personalized models could also set the appropriately personal context for health information and learning.

8. Work to support augmented reality development for an environment that will enable us to get information on-the-fly about what our options are for the things we eat and drink.

Institutional support is needed to creating an augmented reality environment of information for restaurants and markets via databases that support easy access to informaiton about what we’re consuming. Bar codes, wi-fi, Bluetooth,  RFID tags  and new future technology should allow smartphones to immediately obtain information about the nutritional content of meals in restaurants and packaged products in markets. I already use an app called “FoodScanner” that uses the iPhone camera to scan package barcodes, look them up on a remote database, and provide me with the nutrition information food products are required to have on the package. The information can be saved for future use, but the whole process is pretty klutzy. A system that automatically grabs infomation and checks it against a personal profile of stuff to avoid is not hard to imagine.

When I was  in school at ~13-years-old we had “hygiene” class in which we had to learn the parts of the body (“pipes and plumbing,” as it was known) and their functions. Then in high school we boys got movies and slide shows with “the coach” to graphically show how disgusting VD and pregnancy are. That was supposed to deter us from sex until marriage. It was also  all I got from public education about health. I suppose it was somehow supposed to enable me to maintain my health for life.

The steps I outlined above is, I hope, a more robust approach and consistent with technology and lifestyles of the near future. The iGeneration evidently no longer sees a reason to fill their heads with generalized infomation with less that obvious personal applicability. They already know they have the option of getting appropriate information at the time it’s needed. Perhaps they’re already aware that the infomation they’ll be exposed to during their lives will be changing constantly. Making this situation lend itself to a healthier population is going to require many elements working together.

The things I’ve suggested also are simply ideas for a long-term process. If there’s one thing I’ve learned from a career in public health it is that change tends to be a lengthy, nonlinear process requiring tolerance for uncertainty and unexpected developments. Change is a career, not a project.

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01
Mar
10

Health paradigm shift needed for the 21st C, part 1

The Society for Participatory Medicine recently asked its members (I’m one; it’s open to the public) what they wanted from the society. The request prodded me to think about what might be undertaken to advance “participatory medicine” or “health 2.0” which are similar if not identical concepts. Others might be better at identifying distinctions.

The purpose of the Society for Participatory Medicine is: “To accelerate change in the culture of healthcare to a more participatory model, through leadership, advocacy, information and tools.” I think it’s fair to say “participation” means a more even role between doctors and patients in making decisions in medical situations. If you go back to my parent’s generation (mid-twentieth century) typically doctors held the information, authority, and decision making power in virtually all medical situations. People didn’t expect to need to know much because, if you got sick, you went to the doctor and he — typically, he — told you what was wrong, what he’d do about it, wrote the prescriptions, and sent you to the hospital if necessary. If you lived in that era you know that generation gratefully accepted the doctor’s direction and didn’t ask many questions. The TV show Marcus Welby, MD, dramatized the medicine of the time.

But, as I described in an earlier post, a portion of the population was not satisfied with the situation and began to question established practices. This was especially true of women not too happy with male-dominated gynecology. In the 1970s, as I recall, emphasis on “informed consent” began to grow. When I went to work in cancer public health in the early ’70s it was shocking to learn that some doctors did not tell some of their patients they had cancer because the physicians judged the patient couldn’t take the shock. The patient participation movement has really accelerated since the internet broke the dam on medical information. The public has gotten much freer access to information from sources other than their personal physicians, which, in may cases, wasn’t much.

That’s the past, the 20th century model. Where can we go from here? Organizations are pushing the envelope, but I’d like to entertain a few ideas for the 21st century that would shift health and medicine in a more radical way.

In earlier times much of health care was the domain of women: an extension of their maternal, nurturing role in the family. The late 19th and the 20th centuries saw the rise of “scientific” medicine. (For an excellent history get hold of sociologist Paul Starr’s, The Social Transformation of American Medicine: The rise of a sovereign profession and the making of a vast industry. The title alone says a lot.)  The complexity and volume of medical knowledge as well as the financial advantage of professional exclusivity eventually resulted in the consolidation of medicine into the system of medical education, licensing, legal authority for therapeutic practices, and self-policing that dominates today. And the swelling of a huge medical industry focused almost exclusively of physicians as the kingpins and market managers reinforced the doctor-centered system. The responsibility for learning and applying medical knowledge placed doctors in a paternalistic position while patients remained in a passive, unschooled position.

I would not challenge the notion that medicine has made great progress under the current system, nor that the trend to super-specialization of medical knowledge will continue. But I have to ask: Should relative passivity and health ignorance of the public and inability to make health judgments remain our aspiration going forward? Are we not capable of knowing much more, of participating more fully in  effective health behavior? That includes accepting the power and responsibility for our own wellbeing. In the past when information was more difficult to distribute relatively low health literacy might have been more understandable and acceptable, but surely we can do better in the future.

My position is that we have already more powerful knowledge tools than even a couple of decades ago and those tools are growing in capability as we speak. There are seeds of a potential to put individuals in a much improved position if we are willing to build systemic support and institutions that augment our abilities as much as the institutional infrastructure that supports the medical profession. It is possible if we have the will to put much greater innovation into it. I believe we can up our game as “patients” — the noun we have accepted — and relate to physicians and scientific/medical institutions in a more capable way.

This is not just some power grab. It seems to me taking charge of our health is not only possible, it is essential. The pathetic political struggle currently going on around “health reform” in the US shows how powerless we’ve allowed ourselves to become. While various interests use politicians as sock-puppets to stage a drama about the future of medicine, we citizens have become primarily ineffective, frustrated spectators. But I hope many folks have learned that we cannot continue to let our most precious possessions — our health and that of our family — remain in the hands of others. And we’ve learned our financial wellbeing is intimately tied to our health status. Serious disease has too often become a financial catastrophe aw well.

Well, I’ve spent a lot of words on the history and context behind what I think we ought to consider for a health promoting environment for the future. In the next post I’ll get down to grinding out the main points.

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26
Feb
10

feel good, look good, and live forever!

I spent almost all day yesterday listening to the health care reform summit. It triggered some recdollections.

Years ago — was it 15 or 20? — I attended a couple of conferences at Berkeley about managed care, the solution du jour for relentlessly rising health care expenditures. On one panel was Leonard Schaeffer, former president and CEO of WellPoint. (I emphasize “former” to insulate him from the heat the company has taken recently for double-digit premium increases to some customers.) He mentioned that he was often asked at meetings, “What to people want?” with respect to healthcare. His standard reply was: “They want to feel good, to look good, and to live forever.”

He said this only partly in jest. As the CEO of a major payer company he had seen that there was heavy demand by customers to pay not only for treatments alleviating physical ailments but also for treatment to relieve their distress, to make them look more like they thought they should, and to forestall the ravages of age and the ultimate insult, death. The boundaries of the three categories were so ill-defined that it was possible to expand what people wanted reimbursement for indefinitely. This resulted in the administrators dilemma: satisfying the customer’s expectations without utterly exhausting the bank.

Apparently not much has changed. Our expectations for medical relief remain largely unbounded. Perhaps it’s because after WWII we came to expect medical miracles: antibiotics that knocked down infections, vaccines that eliminated polio and communicable diseases, surgery that seemingly made anything possible. I recall watching open heart surgery on fuzzy black and white nationwide TV broadcasts because it was such an astonishing development. After that we sent men to the moon.

When I went to work in the cancer field we had an organizational slogan: “We want to wipe out cancer in your lifetime.” “Wipe out” as in totally eradicate. Seriously! It wasn’t a disingenuous promise; it only reflected the limits of what we knew about the complexity of the disease at the time. People in the cancer field had to let that notion go by the wayside as we began to see that terms like “cure” and “eliminate” were perhaps over-statements when dealing with a disease that stemmed from malfunctions of the most basic biological processes of living things.

The aim of much of the cancer community today is to shift more cancer cases into chronic conditions (as opposed to acute, lethal episodes). Well, that’s progress and perhaps an inevitable step in greater mastery of the disease; but one of the most serious problems we have in health care today is the rising cost of chronic diseases. A study published in Health Affairs a week ago indicated that half of the increase in Medicare spending 1997-2006 was due to increases in prevalence of cases of 10 diseases or to increased cost of treating cases. Cancer isn’t even in the top 5 of the chronic disease list…yet.  One of the biggest surprises of my career was that the financial barriers to state-of-the-art treatment would become a challenge nearly as serious as the intricacy of the disease itself.

We have a difficult time in America discussing pragmatic matters like to cost of protracted care in the same conversation with the good of “saving lives.” Extending life is taken as an unalloyed good. You can become a pariah for mixing the two (i.e., examining comparative effectiveness becomes “death panels” or “pulling the plug on grandma”). I don’t know how many times over the years I’ve listened to well-meaning people advocate efforts requiring a lot of resources with the argument that, “If we can save just one life it will be worth it.” Have I just become too callous when I react: “Uhm…maybe some good can be  done putting the resources elsewhere”? In my entire 40 years in public health I never heard a serious discussion about the unintended or down-side effects of doing whatever it takes to retard illness.

But it’s not a discussion that can be avoided much longer. During the health care debate yesterday everybody seemed to agree on a couple of things: 1) we needed reform for humanitarian reasons, and 2) the continued relentless rise in costs will bankrupt us. One of the Republican senators said something like (I’m paraphrasing), “In a perfect world we’d want everybody to have everything, but we can’t afford this.” I’m a lifelong, unrepentant liberal, but I thought that was a pretty straight statement, one that resonated with me. The truth of  that specific assertion can be argued either way, but it is a matter we have to address. It’s bigger than just the price of the the current health fix. We need to have some frank talk about allocating our less than infinite resources for many benefits that might be achieved. I’m hoping that the baby boomers — of which I’m one — currently heading into the nexus of this issue can bring forth some of the brashness with which we’ve talked about many things in our time (drugs, sex and rock ‘n roll, etc.) and break down the taboo about discussing the realities of life, death, and the price of peanuts.

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18
Feb
10

Using a couple of self-monitoring tools

I’ve mentioned before that I’m experimenting with e-tools to help me stay on track with my health goals. I’m also doing it to be able to comment on the emerging fields of personal health records and m-health (mobile health). Today I’ll be commenting on an iPhone app I use all the time to track my walking — iTreadmill — and a free graphing program I found about yesterday thanks to @accarmichael  — Tableau Public.

iTreadmill is a popular pedometer using the accelerometer in the iPhone. The app allows the recording of pace and time during a walk or run and calculates other measures.

  • Average Pace (pace over entire walk/run)
  • Average Speed
  • Calories burned
  • Distance
  • Pace (current pace, pace over past 30 secs)
  • Speed (current speed)
  • Step Count
  • Strike Rate (step rate, in steps/min)

I think iTreadmill does a good job recording these parameters, at least sufficient for my needs. They claim to have proprietary technology (trademarked PocketStep) that is supposed to enable the device to measure your movements whether your iPhone is in your pocket, clipped to your belt, or held in your hand. The stride parameter can be adjusted to fit with your stride. The app senses when you stop at, say, a stoplight and detects when you’re moving again so the elapsed time adjusts for interruptions. Pretty much everything else is calculated off your number of steps and time.

The data for each occasion can be stored so you can see your history. The latest version allows you to graph distance, steps, calories burned, and time over the past week, 30, 90 or 180 days. You can export the history by emailing the history file to yourself.

That’s a sore point with me. The FAQ says you can get a “well formatted” table from the email by copying it into a spreadsheet. But all the data from each event is just a string of characters with variable spaces between data elements. It isn’t comma-delimited so you can’t easily separate the data into fields for calculations. I tried various search-and-replace strategies to break it into separate fields but gave it up as too time consuming to be worthwhile. I’ve twice sent emails to iTreadmill asking for help with data formatting and suggesting they build in a better export format, but I’ve gotten no reply or results so far. I ended up manually re-keying my data from iTreadmill into OpenOffice spreadsheet: not my idea of how to facilitate better health behavior.

Indeed, I’m wondering if poor responsiveness isn’t pretty standard for the apps business. I’ve gotta think many of the 100,000 apps for the iPhone are done by one or two developers working out of their mom’s basement. I suspect limited support for technology is going to plague the e-health, m-health movement for some time to come.

That takes me to the next tool: Tableau Public. For me an essential quality of supporting my health program is being able to gather data with a minimum of fuss, store it, and manipulate it with ease. However, the overriding characteristic of the app world — as has been the case with IT for decades — is fragmentation and lack of common standards by which data from a variety of sources can be conveniently combined into something satisfactory. My goal is to export data from the apps I use, store it as a database (with or withyout the help of HealthVault or Google Health) and visualize it in a way that tells me how I’m doing. Since I’d manually re-keyed my iTreadmil ldata I was pleased to learn a versatile, sharable program for visualization has become available. I figured it was an omen to begin shareing my data on this blog, limited as it is.

I started only a couple of days ago with Tableau. It’s a poweful tool that’ll take me some time to master. You need to download a free desktop program. With it you open your spreadsheet or database from within Tableau, and it interprets your sheet to do a lot of the work of getting it ready for display. The resulting display files are stored “in the cloud” on Tableau’s servers. But the site sets the graphics up for embedding into various web apps such as blogs. I’ll be gathering more data, and it appears that Tableau may be a platform for integrating data into a coherent story. So, such as it is, here’s my graph for walking in January and February.

The distance walked is up and down, but when I put in the trend line (dashed line) at least it’s up. That’s encouraging!

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