Posts Tagged ‘Organizations


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.


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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