Archive for the 'Health & Medicine 2.0' Category

25
Jan
11

big, big health bills down the road

The other shoe dropped today. The first one dropped a couple of weeks ago when the Journal of the National Cancer Institute (JNCI) published: “Cancer Care Costs in the United States: 2010–2020.”
The estimated total cost of cancer care in the United States in 2020 is expected to be $158 billion assuming the most recent observed patterns of incidence, survival, and cost remain the same. This represents a 27% increase from 2010 due only to the projected aging and growth of the US population, according to a study published online January 12th in The Journal of the National Cancer Institute. However, the authors also note the cost of cancer care could rise even more quickly under some reasonable assumptions such as a 2% annual increase in costs of the initial and final phases of cancer care. […] Under a different scenario of continuing trends in cancer incidence, survival, and costs of care, the total cost of cancer care in 2020 is expected to be $173 billion, an even larger increase (39% from 2010).
That was shoe #1. Shoe #2 slammed to the floor when I read on physorg.com today: “Cost to treat heart disease in United States will triple by 2030.”
“Despite the successes in reducing and treating heart disease over the last half century, even if we just maintain our current rates, we will have an enormous financial burden on top of the disease itself,” said Paul Heidenreich, M.D., chair of the American Heart Association expert panel issuing the statement. […] Between 2010-30, the cost of medical care for heart disease (in 2008 dollar values) will rise from $273 billion to $818 billion, the authors predicted. “We were all surprised at the remarkable increase in costs that are expected in the next two decades,” Heidenreich said. “We need to continue to invest resources in the prevention of disease, the treatment of risk factors and early treatment of existing disease to reduce that burden.”
And, heck, there are more shoes to come. Some projections show Alzheimer’s disease increasing by 40% just between 2000 and 2025. The cost in dollars and in stress of that disease is huge. Just to round things out, an article in USA Today a couple of weeks ago put a big price-tag on obesity:

The total economic cost of overweight and obesity in the United States is $270 billion per year while the cost in Canada is about $30 billion a year, a new study shows. […] The $300 billion total cost in the United States and Canada is the result of: increased need for medical care ($127 billion); loss of worker productivity due to higher rates of death ($49 billion); loss of productivity due to disability of active workers ($43 billion); and loss of productivity due to total disability ($72 billion), said the Society of Actuaries (SOA).

That’s not even counting the long-term cost of obesity on the upcoming generation. A Stanford Medical Center publication lists among the effects of obesity: high blood pressure, diabetes, heart disease, joint problems, cancer, sleep apnea, metabolic syndrome, psychological problems…among other things. Some project that the current generation my be the first in US history to actually live shorter lives, on average, than their parents.
I worked 40 years in public health, 35 of them in a cancer organization. Never in my career did I hear a serious discussion of the economics of cancer, the aggregate cost of research and treatment, nor what, if any, unintended consequences might result in the bigger picture of healthcare in society. No one raised the question of whether surviving one disease just make people candidates for other problems just as dire. In the cancer community the goal these days is not to get rid of the disease entirely — a goal that it took a long time to realize isn’t feasible in the foreseeable future — but to make cancer a disease that no one dies from. So the result will be that cancer “survivors” will be shifted over to die eventually of something else: heart disease, maybe, or Alzheimer’s. Just as long as death isn’t from cancer, it’s a victory…of sorts.
My point is not that relieving the burdens of disease is an unworthy goal. But during the 20th century medicine fragmented into dozens of specialized professions, advocacy groups, and agencies, all pushing the envelope of what they want to achieve. It’s time for all concerned to step back and determine what expectations are realistic and what the consequences are. We’re now in a huge political hassle over the cost of future health care and who’s going to pay it. The data above indicate the price will be great. It’s time for well-intended advocates to include in their mission wrestling with the real-world issue of making their ambitions feasible with finite resources.
07
Jan
11

is synthetic life approaching?

By Richard Wheeler (Zephyris) 2007. Lambda rep...
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There has always been a metaphysical aura about life. In addition to the material in a cell or other living thing, most people seem to think that when we say “life” we’re talking about a spark or energy that transcends the material constituents of that living thing.

But suppose that organisms that show all the properties of life can be created by off-the-shelf raw materials of our world and made to function as living through human-designed processes? At no point would some spark or energy be added to jump-start life processes although complex chemical reactions are central to synthesizing the constituent parts. (Is the term Frankenmolecules already taken?)

Researchers are working on just such approaches in an effort to understand the details of how living things get organized, and just recently another step was  taken. Princeton chemist Howard Hecht and his team built proteins from scratch, put them in bacteria, and the bacteria used them to grow and carry on just like the proteins they naturally generate. They demonstrated that there’s nothing mystical or magical about molecules generated in vivo. Actually, there were two artificial steps: they designed artificial DNA that then generated the synthetic proteins.

“What we have here are molecular machines that function quite well within a living organism even though they were designed from scratch and expressed from artificial genes,” said Michael Hecht, a professor of chemistry at Princeton, who led the research. “This tells us that the molecular parts kit for life need not be limited to parts — genes and proteins — that already exist in nature.”

“What I believe is most intriguing about our work is that the information encoded in these artificial genes is completely novel — it does not come from, nor is it significantly related to, information encoded by natural genes, and yet the end result is a living, functional microbe,” said Michael Fisher, a co-author of the paper who earned his Ph.D. at Princeton in 2010 and is now a postdoctoral fellow at the University of California-Berkeley. “It is perhaps analogous to taking a sentence, coming up with brand new words, testing if any of our new words can take the place of any of the original words in the sentence, and finding that in some cases, the sentence retains virtually the same meaning while incorporating brand new words.”

Although millions of proteins from evolved DNA already exist, the ones Nature has produced is only a small fraction of the proteins that could be produced by heretofore unseen DNA and protein combinations. The potential design space is vast. Some people think living things were produced by intelligent design from the beginning, but I think these experiments are getting us closer to the truth. Evolution of the world’s material into living things over a hell of a long time gave us what has gone before, but we’re getting closer and closer to true design of life forms from a huge set of possibilities that will become part of our world in the not-too-distant future.

01
Jan
11

Here we come, ready or not!

Compare the population pyramid of the USA whic...
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On this date 65 years ago the first kids of what would become the “Baby Boom Generation” started to build perhaps the most influential demographic in US history. Today the first ones turn a symbolic and practical corner by entering the traditional 65-year-olds bracket. It’s like the first play of the fourth quarter of a football game. There’s more game ahead, but the end is palpably approaching.

I got a three-week jump on the gang. I was born in December 1945, but I still count myself in that social bracket. It took awhile for a social perception of the big population bulge to emerge and longer to find out what the consequences would be. As the “pig in the python” moved through the decades the sheer size of the population affected everything from education to social norms to defense practices.

Now here we are at another key point. We’ve gotten better at understanding that such a large population pool has social, political, and economic consequences, but in the US we still don’t do much to actually prepare for things. Ken Dyctwald has been talking about the “Age Wave” since I was in public health grad-school 40 years ago. He’s made a career and an industry out of spelling out what’s coming…but knowing that the hurricane is swirling around and heading to shore hasn’t produced great preparation. The Age Wave may result in something Katrina-like because, in the US, we have ideological prejudice against planning. No, we prefer to wait until the calamity is upon us and then scramble to survive. After it’s over we proclaim: “We made some mistakes but we learned from this disaster and it’ll never happen again.” Famous last words, over and over.

I’ve gotta say, already having my Medicare card in my pocket and Social Security checks being deposited in the bank is comforting. It’s the people at the back of the Boomer cohort that have more reason to sweat it. The denouement of the Baby Boom generation is one of the huge dynamic factors that, along with others, suggest to me that the future will be like a vortex–hence the name of this blog–of swirling forces that’ll send us all spinning. For what it’s worth, here we come.

26
Dec
10

Auguring the future

I can’t help being fascinated by prognostications about the future. My last post was about online jobs for 2011, and the end of the year provokes a lot of crystal ball gazing. Even heavyweights like IBM indulge in exercising their forecasting skills. You’ve gotta pay at least  some attention to what an outfit with such a solid track record has to say. These are things to happen between now and 2015.

  1. Batteries for your gadgets will last up to ten times longer. The batteries will “breathe” or take in oxygen from the air and react with energy-dense metals to generate energy.
  2. In some devices batteries could be replaced entirely by scavenging energy from our surroundings. Watches that maintain a charge by taking energy from the motion of your wrist, as some do today, is an example. There’s a lot of unused energy around; the problem is transducing it.
  3. IBM plans to recycle much of the energy used in data centers to heat buildings and drive air conditioning. Up to half of the energy of data centers today is just to keep the servers cool, and it goes out to the air again through cooling towers. Hey, I might be able to heat my shower water with my home computers?
  4. They’re expecting 3D communication person to person by hologram like Princes Leia in the first Stars Wars movie.
  5. IBM’s looking at “adaptive traffic systems” that’ll personalize your commute,  predict traffic jams and adjust the flow. (It’s kinda discouraging to think that people will still be grinding away their lives on commutes to awful offices. Let’s go with the holograms and Google’s self-driving vehicles.)
  6. Finally, Big Blue predicts that we ordinary citizens will be “walking sensors” equipped with enough environmental sensors in our phones to keep a running data stream to analysts who can use it to do scientific ecological research.

I’m disappointed that IBM didn’t mention health applications of being walking sensors, so I’ll add another prediction of my own: By 2015 we’ll be wired with sensors alright, but many of them will be plastered on us so continuous data can be collected about how our body is doing 24/7. With that I think we’ll be able to get a lot closer to the idea of personalized medicine and personalized health behavior. There are a lot of companies already working on a range of data collection devices and another five years ought to bring much of it into common use.

11
Nov
10

Cancer reading of interest

I saw a review today in the NY Times of Dr. Siddhartha Mukherjees’s book, The Emperor of All Maladies. Supposedly it’s a “biography” of cancer. Evidently he recounts the changing historical conceptions of cancer and the efforts to deal with the disease. Since I worked in the field for 36 years I guess that qualifies as being a part of that history, or at least the recent part.

What interests me is that the reviewer, Janet Maslin, quotes the doctor as saying in the book:

Cancer is a flaw in our growth, but this flaw is deeply entrenched in ourselves…We can rid ourselves of cancer, then, only as much as we can rid ourselves of the processes in our physiology that depend on growth — aging, regeneration, healing, reproduction.

Maslin criticizes the statement as being an “oversimplification”. In what respect? I fully agree with the statement in that cancer comes from the errors inherent in our physiological cell processes or damage to those processes induced by outside influences. Cancer could only be eliminated if our cells ran perfectly for decades or were able to fix every error perfectly. Our cells do a heck of a job, but the reality is that over the long course of our lives errors creep in. I don’t think that overcoming flaws in basic processes can be done (although I don’t want to rule out amazing technologies that might be developed many decades out), so, as I’ve said before, goals and expectations about cancer need to get real.

There’s a kind of upside to the magnitude of the cancer problem. The fear of cancer had driven people to open up their wallets and the treasury to do a huge amount of bio-medical research. All of it contributes to the vast amount of knowledge needed to deal with many maladies and to understand our very nature. There’s still a long way to go. I sometimes wonder where we’d be in life knowledge and medicine without the terror of cancer. Human beings don’t seem very interested in knowledge if it doesn’t have a direct benefit to them.

p.s.: When I was working I’d whip out a credit card and order a book like this from Amazon immediately. Now, however, I’ve got a library card. I went online and placed a hold on the book. After 15 people ahead of me read one of the copies I’ll get hold of it and save the $16.95.

14
May
10

Paging Dr Nano…

I’m kind of obsessed with the nanoscale world because it’s the scale at which basic living systems start. The macromolecules of cells — the building blocks of organisms — are really doing meaningful processes down at the nanoscale.

Nanotechnology — the technology of things designed and engineered down to the molecular and atomic level — is beginning to show signs for remarkable devices not far from going on the market. And one of the first, robust markets for nanotech is going to be medical nanotechnology, especially for cancer. I’ve been watching this for a few years years now.

I recently stumbled across a nanotechnology newsletter I hadn’t seen before: Nanowerk. It’s a European site focused on technology developments in European countries. Every country with healthy science and technology resources is steaming ahead with nanotech R&D in anticipation of huge future development. The newsletter circulates 10 to 20 briefs per day.

An article from May 4 really got my attention. It’s titled: “Informatics moves into nanomedicine,” and reports on research recently published in Pediatric Research. There are what I think are some interesting assertions about the near future of the field.

…some nanoparticles and nanodevices have already been approved or are about to be approved by the United States Food and Drug Administration, including, for example, superparamagnetic nanoparticles to detect metastases in some types of cancer or new devices that combine microfluids or nanosensors to detect tumours.

These applications of nanomaterials open up new prospects for personalized medicine, the authors add, indicating that classical clinical studies need to be redesigned to adapt to the advances taking place in genomics, proteomics and pharmacogenetics. “The introduction of nanoparticles that can target different molecules or groups of atoms with high precision can significantly advance the personalization of clinical procedures”, the article says.

But the statement that blew my mind is:

The possibility of biomolecular devices acting not only in vitro but also in vivo within diseased human organisms is also opening up new prospects, where biomolecular automata could even intervene to intelligently deliver drugs to the diseased regions of the human body just where they are needed.

In this respect, the authors note that research on a “Doctor in a Cell” is already in progress. This is a genetically modified cell that can operate in a human body. It contains a biological computer that can process and analyse external biological signals, emit a diagnosis and deliver the desired molecular therapeutic signal to treat the patient.

The doc-in-a-cell is “already in progress“?! Not exactly the Fantastic Voyage, but close enough to get me excited!

13
May
10

Walgreens blinks

Well, that didn’t take long!

On Tuesday I blogged about Walgreens announcement they were going to start selling a OTC genetics testing kit. I say were… Today they announced that they’re putting that idea on hold. As I predicted, the move started a firestorm and in just two days it was hot enough to get the big retailer to back off.

The FDA and a bunch of doctors and genetics experts piled on and put the brakes on the project.

“These kits have not been proven safe, effective or accurate and patients could be making medical decisions based on data from a test that hasn’t been validated by the FDA,” said agency spokeswoman Erica Jefferson, in an earlier statement Wednesday.

I’m having deja vu. That’s pretty much the same thing that happened when 23andMe and other gene testing companies went public back in ’07. Of course, some of the concerns expressed are not trivial.

The proliferation of consumer-marketed genetic tests has troubled many public health officials and doctors who worry that the products are built on flimsy data.

“The problem with all of these products is they’re based on incomplete, invalidated data and we don’t know what the impact on consumers will be,” said Dr. Muin Khoury, director of the National Office of Public Health Genomics at the Centers for Disease Control and Prevention.

The biology of how DNA variations actually lead to certain diseases is still poorly understood, although a number of public and private institutions have been racing to find answers.

That’s true. One of the themes of this blog is the unexpected complexity of genetic expression that has been uncovered during the past decade. Genetics scientists have been rocked back on there heels to the point of having to rethink some of the earlier assumptions in the field.

It seems that both the public and scientists have held some simplistic assumptions about how genes work. Scientists are making new discoveries nearly every day. So experts say with almost every breath these days: “Genes are not destiny!” Yep, the biology of what happens to us over time is much more complicated than that. So one of the most intriguing questions is: Why aren’t our genes destiny? If our state of being is an interleaving of genetic (internal) influences and environment (external) factors, how do they come together in the organism? That’s a deep issue that will take much more time to plumb. It’s one of those areas where scientists say: “It’s not fully understood.” (That’s science-speak for, “Duh!”)

My thought is that this is an opportunity to bring the public up to date and let them know the puzzle has 1,000 pieces, not 500 as first thought. We have been getting a trickle information about genetics for a couple of decades through media, but that volume is about to increase to a torrent. So where is the effort to help the public have a solid source of up-to-the-minute information? The federal government‘s agencies all have web sites with bits and pieces of the necessary information, but all-in-all the information on genetics is fragmented in a thousand places of variable currency and veracity.

So here’s my wild appeal: As a mainstay of our so-called health care reform effort, let’s extend the charge to our health and scientific agencies (NIH, CDC, NSF, DOE, NLM, etc.) to include making available to the public coordinated, up-to-date, evidence-based information on human biology, health maintenance, medical and scientific frontiers, and a realistic perspective about the circuitous route by which scientific progress is made . Make this available through state-of-the-art communication technology, i.e., the internet and its future derivations. Every citizen, doctor, blogger, teacher, or mom should be able to access reliable information on anything they hear about health in a few swipes of their smartphone. This is a big job and will take money. Surely in the billions budgeted for health care reform in coming decades this would be worthwhile. And this could be an international effort both in information gathering and in paying for it. Health research is global and the findings apply to all of us. The US isn’t going to go to Mars by itself, so why don’t we throw in with all the nations facing the same health issues?

Learning is a process. Walgreens accommodation to the regulators may eventually turn out to be part of something positive.

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.




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