“Minorities as Research Subjects”
“Minorities as Research Subjects”
Using The United States’ The Family Smoking and Prevention Act (Public Law 111-31) as an example, complexity is inherent to anti-tobacco policy and how unexpected factors emerge once such a divisive policy is enacted. Passed during President Barack Obama’s first administration, The Family Smoking and Prevention Act (Public Law 111-31) became the most sweeping regulatory support in combatting a leading cause of preventable death in the United States that have been scientifically linked to tobacco use. The Family Smoking and Prevention Act did not take away access to tobacco to consumers of age. Tobacco is sold legally, under the continued regulatory oversight from the Federal Food and Drug Administration. Newly ‘strengthened’ regulatory powers supplied by this act works to ensure the “safest” possible tobacco products sold to U.S. consumers using the most ethical forms of marketing to the public. Safe is certainly used loosely here. The sale of tobacco as ethical is another question. But tobacco is legal to use for those of age to use the product. What is allowed from a regulatory standpoint by this Act is targeting sales, marketing and distribution channels.
Upon maximization, the virtuous goal is to optimize the desired benefit of tobacco control policy, thereby saving lives and improving quality of life from morbidity and mortality related to tobacco use.
“This legislation will not ban all tobacco products, and it will allow adults to make their own choices…We know that even with the passage of this legislation, our work to protect our children and improve the public’s health is not complete.”, President Barack Obama during the signing of the Family Smoking Prevention and Tobacco Control Act (2009)
“Deliberate or orderly steps are not an accurate portrayal of how the policy process actually works. Policy making is, instead, a complexly interactive process without beginning or end.” (Lindblom & Woodhouse, 1993).
President Obama’s statement illustrates the depth and limitations of the powers of policy and portends systemic mess that could possibly ensure even under the most noble of intention. From his statement, we can take away that the following issues are central to the prescript of the law.
1. Increasing regulation of a legal product, in this case, tobacco.
2. Blocking tobacco advertisements from children within a specified distance of schools and parks.
3. Making flavored tobacco distribution illegal. Menthol is excluded from this ban.
4. All harmful chemicals must be fully disclosed to the smoker along with graphic fear appeals on the labelling.
5. Public Safety overrides autonomous actions of the consumer. Some elements of the society, such as children, require higher ethical safeguards which require the power of policy behind it.
Is an advertisement on the way home from the park that falls outside of the banned quadrant acceptable? By the letter of the policy, it is allowed. Is it ethical at the point of exposure to the ad or to the mere possibility of exposure to the marketing? Menthol is exempt from federal ban. Menthol would be a gustatory nightmare that does not leave a smoker’s breath or lungs minty fresh. I would rethink a pint of vanilla bean and menthol ice cream, but the immense popularity of the menthol flavor in tobacco does not require a sugar cone. It requires demand. Do we have enough room on the carton? It is going to have to be microscopic font and some gory images.
I am a never-smoker but that reality does coat my social and intellectual observations of the “smoker”. When I have stood behind someone purchasing tobacco, I have marveled at the specification given by the customer when requesting a cigarette. The customer recalls with exact precision of the colors on the box, the shelf location, and the nature of acrid, intoxicating smell wafting from the creases of the box.
Nope…Yes, the box right there on the second shelf next to the Ultra non-filtered. I want those menthol non-filtered buy one, get one. It will be debit card. And a lighter.
Cigarette smokers have been found to have very high levels of brand loyalty (see Dawes, 2013). The smoker knows the brand, down to the flavor, even recalling the specifications of the box that they want. At times, perhaps another perceived equivalent cigarette will do just this once and buy a comparable brand if the requested one is not available (Dawes, 2013). For others, not having their brand is a game breaker. Dawes (2013) in his analysis of U.S. cigarette consumer panel data uncovered the strong power of perception in cigarette branding.
1. A smoker that purchases high end cigarettes most likely will not lower the expectation of the quality perception by buying a generic brand.
2. If there is a female aesthetic on the box, men will not bite at all even when the call of nicotine gnaws. They will look for a cowboy or something testosterone driven in marketing appearance.
3. Price point does matter.
4. If you want overwhelming consumer loyalty, market to a smoker.
But is packaging the end of the story? It is only one of parameters churning.
Voluntarily taking the smokes off of the shelves is a different animal altogether. What if a pharmacy decides to no longer sell tobacco which in 2014 was being tried? The smoker may choose to patronize a competing pharmacy that still sells the desired product. In order to offset the loss of sales in tobacco, what other measures will be set in place by the corporation to keep the smoker in their pharmacy a happy customer for other durable goods or leverage opportunities to bring in more new customers to offset the effects of losing smokers’ business? From a public health standpoint, good job for removing tobacco. From a business standpoint, will that smoker decide to move his prescriptions to a rival pharmacy? From a system dynamics view, a business move that diminishes returns is a negative feedback while increasing returns is positive (see Sterman, 2000). While there are standalone pharmacies that only dispense medication, many pharmacies double as quick convenience stores. A smoker is a goldmine. There will be medications on the horizon, if not filled already, to treat the morbidities related to smoking.
How can the tobacco removal spin work, really? Will the spiel from the CEO announcing the policy to remove the tobacco products lose resonance once the Twitter frenzy ensues farther diluting the intended corporate message. Once a message is viral on social media, the more removed the policy machine becomes and the message becomes more susceptible to distortion and emotion. Does the removal of tobacco tricked to higher prices across all products in order to make up for the projected loss of profit? Does a nonsmoker care about using a tobacco free business if he never bought or consumed the product at that time of service? What effect, in the long term, will removing tobacco from one chain have on tobacco related outcomes? Will other pharmacy chains follow suit? As you can see, these policy tentacles overlap and intertwine.
Dawes, John G., Cigarette Brand Loyalty and Purchase Patterns: An Examination Using US Consumer Panel Data (August 9, 2012). Available at SSRN: http://ssrn.com/abstract=2126951 or http://dx.doi.org/10.2139/ssrn.2126951.
Lindblom, Charles E. and Edward J. Woodhouse. 1993. The Policy Making Process, 3 Edition.Upper Saddle River, NJ: Prentice Hall.
Sterman, J. (2000). Business Dynamics-Systems Thinking and Modeling for a Complex World. Boston: The McGraw-Hill Companies.
FYI- FAMILY SMOKING PREVENTION AND TOBACCO CONTROL AND FEDERAL RETIREMENT REFORM (US Public Law 111-31)
Bruce Wayne and his alter ego, Batman, is the epitome of dynamic contradictions.Not unlike Batman’s character struggles, character is built and questioned constantly, often without a law in sight. Since we are tied to people who talk to each other and make social gestures that have to be recognized, the allegory of the gestures of Batman will be used in the following pages to demonstrate how dynamic systems of trust and relationship were right in front of us all along.
As the alter ego of Bruce Wayne, Batman’s identity rests with his strong sense of citizenship with the inhabitants of Gotham City as well as his fixation for vengeance. After the untimely deaths of Bruce Wayne’s parents, his sole purpose was fixated on righting wrong his way. Heroes or, even more interesting counterparts, the anti-heroes in comics are hyper-real. I, the hero, am good, which is obvious by my fluttering cape with the symbol emblazoned on my pectorals. You, the villain, in body skimming spandex sans cape or even the run-of–the-mill town crook, are not good. The anti-hero is downright malevolent (or perhaps just clueless). The duelists compete in a “language of gestures” (Mead, 1938). To Mead, meaning in the world is made through signals and gestures as a kind of social behaviorism (Mead, 1938). The hero saves the world from ruin. The crowned hero takes a right to the kisser. The miscreant falls ungracefully off the cliff on the outskirts of the city. The physical nooks and crannies around Gotham City are incredibly unexpected and diverse, would you not agree? The hero often appears out of thin air. The villain plunders for power and perhaps less importantly material gain. The hero prevails is immediately absolved for throwing city property at said villain. What brought the hero to that place?
Mead (1938) related this idea of gestures to primarily verbal communication. However this idea can be broadened beyond the spoken word. The superheroes in the bout use verbal and physical fighting so as to “make the gestures (the) same”. The villain gets squashed to smithereens by before mentioned city property then hobbles alone to the dark lair to hatch the next scheme. The higher level of cognitive significance of communicating started with those fisticuffs. But mind you, Batman returns to the dank dark cave…alone to live with consequences of his actions.
Both hero and villain are tortured in levering heuristics that each in itself could wreak havoc with stability. Each side of the superhero ethical equations brings undeniable fervor and passion. Bruce Wayne was pushed by a strong drive to avenge. But do superheroes or we mere mortals work primarily off of emotion? Should policy view society as one of rationalized competition for limited resources or one where there is collaboration? For that matter, how should be view “communities of solution” in the same fashion? I do not remember Batman having a brewski in the Arkham Asylum with The Joker. But people tend to demonstrate an allegiance to a side (if only for appearances) to maintain social accord or to leverage advantage.
Any change called metachanges, such as a misplaced physical punch or even a faulty ethical decision, could have major repercussions on the already delicate balance of power. The crooks are transporting from the city dock outdated cathode televisions that conceal booty. Batman swoops down. Good prevails. Bad is defeated for now. But will that Gotham peace last or be the most beneficial in the long term? Does Batman’s moral center waver?
In part, policy must manage the social and ethical principles linked to the nature of these metachanges. Those in policy game realize all too well that the broader politicized arc is really a generalization of all those metachanges. Those metachanges, some perhaps deemed inconsequential or undiscovered, can have widespread dynamic changes on the larger social system. To that end, tackling these real world metachanges can lead to the large visible health payoff that society requires and expects resolution with their morning coffee. The villain is foiled and all is right in our Gotham until the same burgeoning health concern comes back on the top of the policy docket. Batman found the sweet spot briefly, retreating to his bunker wearing his dented Batsuit to the sage advice of his comrade, Alfred. Policymakers reenter the policy bunker, dodging the heuristics minefield, while shrouded by a porous cloak of political stability. The citizens of Gotham haunt them all in public health while some take a long drag on their cig to calm the nerves. It is back to the drawing board.
Mead, George (1934) Mind, Self, and Society, ed. C.W. Morris (Chicago: University of Chicago Press)
I have actually been approached as to why I have not posted on Orgcomplexity as much in recent months.
There is actually a very good reason.
I am ready to announce that my single-authored book that brings systems thinking to health policy and ethics is under contract with Springer. It will be a part of the inaugural SpringerBriefs series in Public Health Ethics. I will keep everyone updated with the publication details in the next few months. The target for publication is mid-2014.
Thank you for supporting Orgcomplexity and I hope that you will continue to follow my book progress over the coming months.
All the best,
If you have been a dedicated follower of this blog, a common refrain has been the complexity inherent to ESRD and organ donation issues. I am honored to share an interview with Dr. Sigrid Fry-Revere (photo above), the Chairwoman and Founder of the Center for Ethical Solutions. Dr. Fry-Revere has enjoyed an extensive career in bioethics and health policy. I recently had the opportunity to ask Sigrid about her upcoming book, The Kidney Sellers, a book that chronicles her journey as the first Westerner to witness firsthand the Iran’s organ procurement system.
Orgcomplexity: Dr. Fry-Revere, thank you for sharing news of your new book with Orgcomplexity. Many may (or may not) be aware of how the need for procurement of organs in the United States. Would you share how bad the organ shortage in US and abroad is?
Dr. Fry-Revere: In the United States there are 100,000 or more people waiting for kidneys. Worldwide 90% of those who need life-saving organs need kidneys. In the United States only 15% of those waiting get a transplant. The rest wait and get sicker and sicker on dialysis and most die without getting a transplant. The longer on dialysis, the less likely a kidney transplant will work even if the person gets one. The average wait in the U.S. is five years.
Orgcomplexity: Why aren’t there enough cadaver kidneys? Is living donation the answer?
Dr. Fry-Revere: Only approximately 1% of people who die in the United States die under conditions where organs can be harvested. Most are too sick, too old, or die too far from the hospital for organs to be usable. Even if every organ that is even conceivably usable were harvested (Presumed Consent), we would only increase our kidney supply by less than 30,000 kidneys, and we need 100,000 or more. Note 30,000 is an optimistic figure because the more marginal the conditions under which a kidney is harvested the lower the conversion rate — the lower the chances that it will be transplantable even if harvested or that the transplant will succeed.The world’s first transplants were with living donors and in the last 30 years in the United States anywhere from a third to half of all kidney transplants were done with kidneys from living donors. For example, the 30,000 assumes an 82% conversion rate, but when the Washington D.C. Transplant Community (where I’m the ethicist for their Organ and Tissue Advisory Committee) makes efforts to maximize the number of organs harvested by harvesting from older and sicker patients, the conversion rate drops by 10% or more. So the yield of potentially usable cadaver kidneys is difficult to pin down.
Orgcomplexity: I have heard about a black market in organs. Is that true? What is the black market in kidneys?
Dr. Fry-Revere: A black market is an illegal market where anyone involved is punishable by fines or jail if they participate and/or there are is no legal infrastructure or laws to deal with disputes when contracts are made. A 2009 United Nations report estimates that 10% of all transplants are illegal black-market transplants with most of the purchasers being from western countries in North America and Europe while most sellers are from developing nations. As a result there is horrific exploitation of impoverished people by wealthy Westerners who don’t have friend or family who can donate and don’t want to brave the waiting list. As a result donors often don’t get the money they are promised, suffer crude and indignant surgical procedures, and often suffer or die for lack of adequate post-operative care.
Orgcomplexity: One might ask why you would want to go to Iran as a subject for your book.
Dr. Fry-Revere: I would rather go to the Bahamas but Iran is the only country in the world with a legalized market in kidneys. I was in Iran for nearly two months. I visited six major cities, each of which had a transplant program. I interviewed kidney buyers and sellers, doctors, the middlemen who arrange kidney sales, and an Ayatollah.
Orgcomplexity: Thank you so much for sharing news of this great work. Could you share how someone might be able to find your book?
Dr. Fry-Revere: The book website is on the CES website. www.TheKidneySellers.com. It is due to come out on February 1, 2014 in hardback. All author royalties are going to the SOS (Solving the Organ Shortage) project of the Center for Ethical Solutions. You can visit www.ethical-solutions.org/projects/sos/ for more information about The Center and this project. Thank you for this opportunity to reach the systems community.
Interested in Orgcomplexity’s take on ESRD and its systemic issues? Check out the hot links for past Orgcomplexity blogs on the subject!
Disclosure- Orgcomplexity’s founder, Michele Battle-Fisher, is on the Board of Directors of the Center for Ethical Solutions. Michele Battle-Fisher does not profit in her affiliation with CES. Michele Battle-Fisher or Orgcomplexity do not in any way profit directly from the sale of this book.
This was originally published in The Yale Journal for Humanities in Medicine. The reference is at the end…
Taking a Dramatic Eye to the Doctor’s Office Interaction
by Michele Battle-Fisher (reprinted with permission)
…I began to realize that although medical labels had the same shiny surface as my childhood labels, with a luster capable of illuminating the darkness of disease, they also had the same sticky underside. (1)
Physicians by nature realize the humanity in healing. However, physicians do not leave “self” at the door. Not completely blind to social status distinction, this magnified distance in the doctor’s office may be overcome through discourse and a shared appreciation of worth. A very tall order… This sounds far too easy to do. Physicians are asked in each visit of a face-to-face interaction with a patient to optimize the success of each visit under a number of constraints. HMO’s demand this. Patients expect this. Recognizing the immense opportunity each interaction may hold in the health of the patient, the importance of maximizing each communicative discourse becomes more important. Certainly this thesis cries for the existence of a medical home and a history of a continued relationship between patient and doctor. It is hoped that this would not merely be a one-night only performance. If a doctor and patient are so fortunate to have this continuity of care (or less satisfactorily a one-shot visit), using Erving Goffman’s thesis of the person as a drama player with a splash of Butler’s performativity can be applied in ensuring better success in clinical discourse.
Goffman presents “dramaturgy” in human interaction as a theatrical event, with scenes, roles and players (2). There is no understudy for the physician. The doctor knows his or her role. This meeting of doctor and patient is inherently social. Socialization in this case, according to Dramaturgy, is a form of ritualized theatrics (3). Once the patient dons a hospital gown awaiting the physician, he is in the role of patient. This means that a patient may play a character of “patient” with more ease than having her true self scrutinized. The true self is flawed for many, being imperfect and open to ridicule. When discerning of meaning for other’s judgment when other appropriate evidence is unavailable, the doctor must use “signs” given by the patient (4). A silent patient leads to an evaluation of a mute actor by the physician based on the “performance” given. Personalities notwithstanding, the patient actors may be evaluated on the basis of phenotype: be it race, creed, or intelligence (5; 6). Goffman would say that following the dramatic performance of the doctor-patient interaction gives emotional grounding to these social interactions (7). It is emotive. But is it realistic to expect the patient to purge his or her soul and construct a shared morality in this environment?
Goffman reinforces the prejudice permeating in the 1950’s (that still remains) that held shamed characters in comparison to the gold-standard of the normal and nondeviant (8). Goffman made quite clear his demarcation of normal and deviant; through his use of “we normals” throughout the Stigma piece, he casts himself as “normal” (9). The patient only seeks a return to a quality of normalcy. They ask to be fixed. They ask for their old well “selves”. And that operationalization of normal may not coalesce with the physician’s recommendations. It may be wholly unrealistic clinically. Stigma is correlated to self-hood, as society has created stigma to cope with the dissonance- causing gaps in knowledge of others (10; 11; 12; 13). Serving the purpose of validating or invalidating self-worth, the symbolism of language allows us to create a reality from the outside inward. However, individuals may save face by silence or speak mistruths during the medical visit, whereby projecting what is expected from the patient “audience” (14). Stigma works self-reflexively, necessitating a social construction of a private and public self (15).
Case in point, can a patient not be aware of this stigmatization? Raj (16) powerful describes the use of medical labeling by practitioners. Raj (17) presents the case of becoming the diagnosis. To heal and make healthy a patient equates with a similar move to “normalcy”. The presence of disease is not. Physicians are asked to arbitrate what is arrantly wrong with the health of the patient. If only a less severe physical deterrent or public outings (or none at all) of illness were enough for society to avoid stigmatizing. As a label of diagnosis, HIV and Hepatitis then become unwanted albatrosses in the public sphere (18;19; 20).
Goffman certainly believed in a moral right in performing a role in society, explicitly calling for obligation and respect as an actor/performer (21). Whether a moral right or not, must each of us fill the role of “patient”? The body deteriorates making this a nearly absolute possibility. In doing so, each patient and doctor become team members by making manageable impressions and upholding the actors’ covenantal rules of engagement of that particular illness. The acting appearance reflects a perceived status and this will be linked to the quality of the patient and doctor’s performances (22). Judith Butler (23) asserts that performativity deconstructs power and social relationships. How the patient chooses to navigate the discourse may then call for the use of performativity. But I would argue that the medical visit would only allow for a conception of meaning within that staged performance.
A diagnosis innately defines a self as an “other”, someone different from the healthful and productive. The diagnosis does not automatically remove the personal consequences wrought on the patient. Goffman has realized that acting runs the development of social interaction, where the dramatic depiction can ring true or be falsified. Following the dramatic turn with transcendence, as theorized by Goffman, would salvage Jane or the patient when no other solution could be found. When Jane Eyre wrote, “reader, I married him (Rochester)”, she culminated her drama. Will a patient be able to say he divorced AIDS? No, it remains a chronic reality.
Medicine is a profession that is shrouded in a mystique that can make a patient-doctor relationship more complicated to navigate. That is a heavy burden to shoulder. I understand that there are many signs given by patients. Could that person without perceived blemish fully adhere to the medical expectations required of both sides in this possibly stigmatic dyad? I wonder if Percy Blythe Shelley was at all knowledgeable of his stigma as a philanderer. I would surmise not; he simply “was” Percy. Society gave his actions a label. Shelley gained far too much prominence from his love poetry for this to be of consequent. Society’s acceptance of his work, mine included, reinforced his sense of self. Shame was trumped by society’s notions of importance of this literary gift.
I ask what gift is left to the patient in this call of full disclosure. At times the gift of healing is left unopened. Certainly, this disclosure is with absolute purpose of healing. Again, I ask, what comfort is gained in complete personal nakedness when the other part (doctor) does not reciprocate this favor? In order to maintain ethical care, the focus, but shared culpability, should fall on the fellow actor, the patient. Do we reward our patients’ performances? I stress the heightened responsibility of the physician to heed this inequality of circumstance and remain mindful of the supporting cast’s “process”. This process may in turn reaffirm the humanity of the medical care being offered. But isn’t that the point?
(1) Raj, Y. (November 2005). Lessons from a label maker. Annuals of internal medicine, 143 (9), 687.
(2) Goffman, E. (1973). The presentation of self in everyday life. Woodstock, NY: Overlook Press.
(3) Goffman, E. (1973), previously cited.
(4) Tunc, T. (2008). Female urinary incontinence and the construction of nineteenth-century stigmatized womanhood. Urology, 71, 767-770.
(5) Shapiro, J. (2002). Self and other through the prism of AIDS: a literary examination of relationships with patients. Microbes and Infection, 4, 111-117.
(6) Goffman, E. (1973), previously cited.
(7) Goffman, E. (1963). Stigma: Notes on the Management of a Spoiled Identity. Englewood Cliffs, N.J.: Prentice-Hall.
(8) Goffman, E. (1963), previously cited.
(9) Goffman, E. (1963), previously cited.
(10) Goffman, E. (1973), previously cited.
(11) Rintamaki, L., Scott, A., Kosenko, K., & Jensen, R. (2007). Male patient perceptions of HIV stigma in health care contexts. AIDS Patient Care and STD’s. 21(12), 956-969.
(12) Shapiro, J. (2002), previously cited.
(13) Goffman, E. (1973), previously cited.
(14) Goffman, E. (1963), previously cited.
(15) Raj, Y.(2005), previously cited.
(16) Raj, Y. (2005), previously cited.
(17) Shapiro, J. (2002), previously cited.
(18) Klitzman, R. & Greenberg, J. (2002). Patterns of Communication between gay and lesbian patients and their health care providers. Journal of Homosexuality, 42(4), 65-75.
(19) Schafer, A., Scheurlen, M., Felten, M., & Kraus, M. (December 2005). Physician-patient relationship and disclosure behavior in chronic hepatitis C in a group of German outpatients. European Journal of Gastroenterology & Hepatology. 17(12), 1387-1394.
(20) Goffman, E. (1973), previously cited.
(21) Goffman, E. (1973), previously cited.
(22) Butler, J. (1999). Gender trouble: feminism and subversion of identity. New York: Routledge.
(23) Shapiro, J. (2002), previously cited.
Battle-Fisher, M.(Feb. 8, 2009). Taking a literary eye to the doctor’s office interaction. [Electronic version]. The Yale Journal for Humanities in Medicine. Retrieved from http://yjhm.yale.edu/essays/mbattle-fisher20090208.htm.
Here is a quick discussion of how insurance should work under Obamacare-
· The young peoples’ premiums which should theoretically have the lower probability of catastrophic illness should offset the increased utilization of healthcare by the graying Baby Boomers.
· More money from 20 year old, less office visits should offsets visits of Grandmother who will have higher premiums but also more health care utilization.
· Voila! A healthful societal success!
Take this paradox for a spin—
Got some job history, young one? Believe me, it is not enough quite yet to offset the need to get covered now during the start of your economic productivity. For those young people from the most disenfranchised families with a history of lack of insurance and unstable work histories, the decisions revolved around accepting the Medicaid expansion along party lines leaves many kids in a lurch.
Medicaid expansion is concentric to Obamacare. Take the arduous tabulation of “reported” enrollments in the state-based health exchanges shouldered by the Advisory Board Company (ABC). Two weeks after the roll out, the Advisory Board Company (2013) reported that 130,000 people have applied for coverage through the health exchanges across 15 states that offered up the goods (the data).
The proof some say is in the pudding but this pudding is more of a murky gruel. Having applied for coverage does not mean covered right now. Many applications in some states default to being Medicaid eligible, not exchanges in the traditional sense. Some states continue to poo-poo on Medicaid expansion, though my home state of Ohio got on board. As ABC pointed out, nobody has paid a premium let alone a penalty yet. The applicants have only expressed intent to become covered. What happens when a young person decides not paying that exchange premium and take the penalty ruler to the knuckles versus not defaulting on that student loan that cannot remain in deferment?
The invincibles are once again invisible to Obamacare’s safety net. How are we set to navigate them back once the media spin of ACA’s hiccups and the economic downturn takes hold in getting covered? I say that we must account for perceptions of DC Comics-flavored invincibility, modernization of youth culture, social marketing with a dash of brain function for good measure.
Invincibility may couple with increased risk taking within this young cohort. Rice (1996) defined youth culture as “the sum of the ways of living of adolescents; it refers to the body of norms, values, and practices recognized and shared by members of the adolescent society as appropriate guides to action”. It must be said that youth culture is a relatively new phenomenon. Do we forget that children were given adult responsibilities such as child labor that gave them no ability to “find themselves”? Inadequate neurotransmitter levels may lead to impulsivity. That darn frontal lobe has not been kissed with the ability to have a reliable gut instinct (defined as following the adult world rules). Lastly, youth are less able to make connections between experience and memory.
Now if that memory does not trigger an “a-ha, maybe that hit of salvia is not a good idea this time”, what are we left with?
We must account for this youth reality as it is now. The child worker of yesteryear was forced to take an economically derived “adult “identity covered in soot all the while his brain remained woefully underdeveloped. Youth today have been protected from unfair child labor and celebrated autonomy (within reason) so the youth can relish in a period of an English Rumspringa that bleeds into their 30’s. They have a more fair life course. With that newly allowed time of this new life, young people have time to build social networks of friends. This is not a big surprise to parents who have tried to evoke “if your friends jumped off a bridge”. If the social network of friends using their influence to make a belief or action contagious, young people have an affinity to being a part of the in-group. Let’s all bungee over the Colorado together.
One, two, three, hell yeahhhhhhhhhhhhhhhhhhhhhhhhhh!
It is that social influence within networks that works to get people to adopt health behaviors. That is if we frame the intervention to account for these conforming networks (Smith & Christakis, 2008). Yes, they can make up their own minds to take the coverage or the penalty. Will that take that insured baptism in the end? Young people (18-35) still have high rates of risk factors that would really require health care intervention (such as smoking, drinking, serious mental health impairments). It is amazing how the body accumulates the follies and unfortunates of youth in its cells. Unless something is catastrophic (which is in itself not a guarantee that care will be sought), the body does not tell its unfortunate tale for many years to come.
The roll out has done little to entice with its social media machine to make and counter this invincibility point. While the jury is still out, there is a possible untapped potential of using larger- scale social media campaigns to support behavior change (Centola, 2013).The Obama administration fills my inbox until my box “runneth over”. Now is the time to leverage social media to engage health behaviors such as signing up for Obamacare with an empirically sound research design. Maybe these social marketing messages could outshine the latest meme of cats with witty words just long enough to support that conscious jump over to the health exchange website. And the Advisory Board Company will keep the ticker of those jumps.
Centola, D. (2013) Social Media and the Science of Health Behavior. Circulation. 127: 2135-2144.
Rice, F. (1996). The adolescent: Development, relationships and culture (7th ed.). Boston: Allyn & Bacon.
Smith, K. & Christakis, N. (2008). Social Networks and Health. Annual Review of Sociology. 34: 409-29.
It is 12:01am EST on October 1, 2013. This is a day of mourning. The government is indefinitely out to lunch. It is time to acknowledge the “Cliff hanger” risks. As I am writing this, the hatchet has gone down. Please start the funeral dirge.
Obamacare is in danger once again. More families will struggle from government stoppages. Obamacare has more lives than a cat. Defunding Obamacare and delaying private health insurance exchanges are risks that we should not take only later see the error of our ways. But there is an undisclosed system on the Congressional game show of who can “come on down”. Throwing money at a creepy Uncle Sam that did not pass his medical boards should not silence the throngs of citizens calling for the moral imperative to protect the nation’s health.
On The Price is Right, there are contestants in T shirts embossed with phrases such as “I spayed Muffin for Betty White” vying for hot tub and dinette sets. The show is based on the fascination of the possibility of success, not its realization of success. Each guess in the Cliff Hanger game has a one-dimensional yodeler in front of cardboard Alps moving precariously towards the cliff and his impending doom.
But what is unique to The Price is Right is that the contestant often calls upon the help of the audience for help. But he does not have to listen. Each studio audience member at the Price Is Right works their uvulas in a frenzy to be picked and give contestants’ help. Please listen to me then you can decide what you will do! That goes for you too, Congress.
According to a 2013 survey performed by Rassumen Reports, only 8% of those surveyed reported that his legislator “listened to him most”. In 2013, Rebekah Herrick wrote in a timely article published in State Politics and Policy Quarterly that often agreement between constituents’ desires and the legislator’s outcomes is defined as the pinnacle of policy success. Absolute agreement among constituents will never happen in the purest sense. However, Herrick said that legislators must constantly reassess the opinions of their publics to inform their legislative decisions. Listen before the guy in Lederhosen or that latest Obamacare initiative goes over the cliff.
There is that adage, “those who cannot remember the past are condemned to repeat it”. Leaving millions of Americans uninsured and sick is a past warranting an encore? In this healthcare debate, we have to do more than just remember the decisions affecting public health problems and the health victories (which do certainly exist).But a holding pattern based on political ideology does not progress make.
Fixing a healthcare “system” requires more than a falsely disjointed approach to its separate elements. Sure, the healthcare decisions are far more complicated than arriving at a price of that Belgian waffle maker. We cannot afford to fall miserably off the “cliff”. We have been doing too much of that lately. The ideological rigidness and that pouting in the corner until your face is blue are not working. We have more than a hot tub at stake.
NOTE: This is a Reworking of “Making sense of healthcare systems using sensemaking and the Price is Right” (Orgcomplexity Blog August 30, 2013).
Occasionally my mind wanders toward random things that are little distraction during my long daily commute. I listen to talk radio when I do not muse over the alpacas that I just passed. I heard leading bioethicist Dr. Art Caplan, presently on faculty at New York University, on NPR recently discussing a myriad of reasons why a patient may never become a candidate on the National Waiting List for a solid organ. End Stage Renal Disease is a public health crisis that is often unnoticed at the sake of more media- sexy comorbidities such as diabetes and high blood pressure. What is distressing is that there is a social vagueness that may occur in the allocation of the organs. We should certainly want the best return on the investment of that organ- a patient that will take care of it and not reject it. But how medicine may come to this conclusion of worth is not standardized.
When medical worthiness of an organ is decided arbitrarily, there is a problem. Even the slightest improvement in mortality rate for those awaiting organs is like well-positioned strides of a marathon runner. We have a long way to go. The path to an organ is arduous yet hopeful at the same time. The accomplishment of finishing the marathon is a welcomed event. The sweaty finish of a marathon runner is met in applause. The race that ends with a transplant signifies more time with your loved one but more weary marathons of ceaseless post-transplant care on the horizon. There are too few of those transplant celebrations for End Stage Renal patients.
There are good, even stellar dialysis centers who serve renal patients with the best clinical and emotional care possible. The dedication of the renal medical community is one to emulate. But dialysis is not a solution. It is a holding pattern until the receipt of that elusive kidney. While the intentions may be the right place, “worth” in receiving organs leaves far too many dialysis patients with a bum deal. Transplant centers, according to Caplan, can make a list of demands to make a patient worthy of organs. Many make perfect evidence- based sense and are backed by medical experts and policy makers. Some may even make financial sense. But does the inherent inconsistency of qualifications to the wait list make moral sense? People are dying at an average rate of 18 per day. Far too many fathers, mothers, friends, and foes are perishing.
How can a society be held to such a high moral standard? The statistics are working against us. The renal community is in for the long haul. However, with far too much frequency, tough decisions of life and death are made under duress and under the casing of outstripped demand.
NOTE: The Art Caplan transcript from the September 4, 2013 interview may be found at http://m.npr.org/news/Health/218811165?start=10. This is a reworking of “From cop cars and stalactites to kidneys and transplantation: thinking deeply” (Orgcomplexity Blog, 9-5-13)