Posts Tagged ‘Society for Participatory Medicine

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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