New England Journal of Medicine - Day 1

It is always a turn-on when a doctor quotes Karl Popper. Our first lecturer today paraphrased Popper’s stress on the importance of reproducibility in research: science does not rest on it’s infallibility, but on it’s reproducibility. The project of medical journals, he offered, is to provide a forum for rigororoulsy reviewing science, and making sure it is reproducible. To take a step back, our first question was “what is the point of medical journals?” The follow up question was naturally, “and why not just cut out the middle-man, and let basic researchers communicate directly with the public?” Numerous scientists take the latter question seriously, and through online databases, provide forum for rapid dissemination of scientific work, prior to the laborious peer-reviewed paper journal process.

One of the prominent groups that is advocating increased access to scientific findings is a website Panton Principles, named after a UK watering hole (seen above). Their argument is given below:

- Science is based on building on, reusing and openly criticising the published body of scientific knowledge.
- For science to effectively function, and for society to reap the full benefits from scientific endeavours, it is crucial that science data be made open.
- By open data in science we mean that it is freely available on the public internet permitting any user to download, copy, analyse, re-process, pass them to software or use them for any other purpose without financial, legal, or technical barriers other than those inseparable from gaining access to the internet itself. To this end data related to published science should be explicitly placed in the public domain. (http://pantonprinciples.org/)

Note that these priniciples do not distinguish between scientific specialty – presumably, physics is on the same footing as geology, medicine, or astronomy. There are a number of issues with this:

1) What are the stakes? The stakes of research in the physical sciences (and mathematics) are different from those in medicine. If an online mathematical journal publishing a spurious proof prematurely, this is a small price to pay for this reasoning being out there. In contrast, in medicine such a mis-step in information could have downstream effects for other researchers, clinicians, and ultimately patients.

2) What is the quality of the review board? In certain online scientific databases, journals are reviewed via large editorial boards. In contrast, large medical journals are reviewed via editorial boards and outsource to academic specialists. If there is a hot paper in cardiology, the editor will collaborate with an independent expert cardiologist in the field. The latter model may take longer but ultimately tailors reviews to speciality with greater precision.

3) Who are you accountable to? While laborious, the peer-review process offers a high standard of scientific accountabilty that is not yet built into less traditional forms of publishing. What if you pre-publish online, and then subsequently make radical changes and get your publication submitted elsewhere. Do you have an obligation to re-post your new research? If you do not, are there mechanisms in place to find this out?

4) Who decides what is the “best information” for the public? One of the advantages of open-source forum is the democratic ideal that the consumers of information will determine what constitutes important science. As someone who perceives a bias toward invasive, sub-specialized care in academic medicine, this reasoning appeals to me. This is known as subject bias – to preferentially publish in certain areas at the exclusion of others. One rebuttal to this is: well, the duty of a journal is to accurately represent what people are choosing to investigate, as well as what is possible to investigate. In some ways, investigating the finer points of glucose metabolism is easier to capture than accurately testing a large-scale societal strategy for diabetes.

Will the open-source activism that is taking hold in the physical sciences take hold in the medical arena? Perhaps, but the stakes are invariably higher.

To Stanley Fish: A Lesson in Scientific Reasoning

A Response to Fish's Article "Dorothy and the Tree: A Lesson in Epistemology" (NY Times, April 25th, 2011)

A few years ago, I happened upon a talk in a St. Louis Barnes and Nobles by Frans De Wall – the famous primatologist. After the talk, I got up the gumption to ask him one of my favorite philosophical questions: did he think that animals had consciousness? He looked at me like I had ten heads and summarily dismissed my question. He said, “I don’t know what you are talking about. If you give me a way to measure it, I might be able to approach your question.” Ever since then, I have tried to be more careful about letting my philosophical brain run wild. Stanley Fish does not seem to have this mechanism – as he routinely eschews practicality in favor of ideas. But like a lot of philosophy, I think he could use a little bit more scientific rigor in his definitions.

His definition of thought is as non-explantory as they come: “Thought is a structure that at once enables perception — it is within and by virtue of thought’s finite categories that items emerge and can be pointed to — and limits perception; no structure of thought can enable the seeing of all items, a capacity reserved for God.” In other words, we think about specific subjects, not everything. If only the mind were that simple! He then makes a bridge to dismiss all forms of “consciousness-elevation,” which he equates with various forms of deconstructionism and critical theory. To equate an undefined concept of consciosness with other loosely defined entities leads him into no-man’s land. I think what he is trying to get at is simple – if the way in which we think is programmed by our culture, is there any way to step outside of this, to truly experience otherness. The ethnographers ask the question as “can the researcher ever truly participate in the studied culture?”

We are doomed to write about these questions for eons until we become more empirical with terminology. So, back to his question:

Say we have been persuaded to the thesis that the things we see and the categories we place them in and the value judgments that come along with those categories are functions of ways of thinking that have their source in culture rather than nature, what follows?

I am not persuaded, as I believe the culture/nature dichotomy is a false one. What does it mean to say that a way of thinking is “natural?” If our thought is determined by culture, surely this is along a continuum, for example, from community-oriented versus individualistic, monochronic to polychronic (i.e. time as rigid versus fluid), rational to emotional, or experiential versus narrative. To move across culture is not to enter an alternate universe, as Dorothy does in Kansas, but to shift our commitments along multiple spectra. Perhaps that means trying harder, as Richard Rorty wrote, to “keep trying to expand our sense of ‘us’ as far as we can” by becoming more community-oriented, looking at our watch less, acknowledging and naming our emotional reactions, or choosing to see ourselves as part of a larger life-narrative.

Science fits in by defining some parameters around “ways of thought.” In the mindfulness literature, this involves looking at some rather cool experiments. A recent study took a group of seasoned meditators and a group of novices and asked them to adopt either experiential self-focus or narrative self-focus while reading the following personality trait adjectives: nervous, cowardly, indecisive (negative, and powerful, energetic, hopeful (positive). By experiential versus narrative, I imagine they mean the difference between “I feel cowardly” versus “I am a cowardly person.” In any case, when they put these people in an MRI, they found certain brain regions lighting up more strongly depending on the type of self-focus. The shocker is that for novices, certain brain regions were coupled together, which were separate for the experienced meditators. In the words of the study, “this suggests a fundamental neural dissociation between two distinct forms of self-awareness that are habitually integrated but can be dissociated through attentional training: the self across time and in the present moment.” (Farb et al, Attending to the present: mindfulness meditation reveals distinct modes of self-reference) In other words, experienced meditators process the world differently on biological level. To relate this back to Stanley Fish, we know it is possible to shift our awareness to different “ways of thought” through specific training.

As for the claims against the Everything-is-socially-constructed-thesis, I again would object to such a blanket thesis. Ian Hacking does a great job with this argument in his book “The Social Construction of What?” where he outlines what constructivism means in different contexts: i.e. what is means to say that mathematics is socially constructed versus a particular religious practice. In one sense, to say that something is constructed means that it could be otherwise. Under this definition, a mathematical proof is not constructed, whereas one’s preference for ripped jeans is – the proof is self-contained, while you could just as well preffered stone-washed jeans. This leads to epistemology, which Fish correctly points out, is wholly distinct from politics. I am skeptical about the utility of epistemology because it seems immune to empirical study. How can one measure the difference between epistemological claims? For what does it make a difference? At least if we carve up the world in terms of experiential versus narrative, selfish versus altruistic, group-oriented versus individual, at the end of the day we have something to measure. Fish finishes with,

The every-thing-is-socially-constructed thesis, however exciting and powerful (or dreadful) it might seem as a revolution in epistemology, cannot itself initiate a revolution in any other realm; it has no political implications whatsoever. And I say this even though each movement on the intellectual left — feminism, postmodernism, critical race theory, critical legal studies — believes that the thesis generates a politics of liberation.

I’m curious about the following:
1) What are other ways in which scientific study demonstrates distinctions in modes of thought (i.e. experiential versus narrative)?
2) If scientists create and define our experiences, what role is their for epistemologists?
3) If epistemology has nothing to do with the politics of liberation, what is it that grounds these politics?

Winifred

My friend Cari aptly boils down every medical student writing piece to the following platitude: “and in the end, I realized that [insert patient’s name] was more than the sum of her symptoms.” Q.E.D. High Honors. Residency here I come. I wager that the majority of residency essays are some permutation on this theme. May the universal appeal to this small amount of humanism lay claim to its deficiency elsewhere in the medical profession?

I have one patient here in Uganda, by accident. Her name is Winifred. In the medical dichotomy of sick versus not-sick, Winifred is sick. She made it through the five days of Village Health Worker training while taking “short-calls” (latrine breaks) a couple of times an hour. She still scored nearly perfect on the post-assessment. At the end of the training, we urged her to go to the health center and request a fasting blood sugar. With transport, this costs about $4, which she, as a farmer with five children, does not have. Thankfully, I had a medical resident from Tufts by my side who backed up my mutterings about Winifred having hyperglycemic hyperosmolar syndrome versus frank diabetes, and she pitched in to help her get a fasting blood glucose test.

Last week I visited Winifred in her village as part of a pilot program we are doing to deliver “prompts” – two-sided laminated sheets of paper with basic health information, to households in their community. We picked Winifred as one of the superstar VHT’s to go house to house with us and explain the prompt, elicit questions from the houses, and see her suggestions for improving it. She lived up to her status. On her advice, the first household installed a “tippy-tap” – two sticks supporting a can of water, with a lever on the bottom, so you can wash both hands at the same time. At the next household, eight children danced around as we approached, dirt lining their bare feet. Two were vigorously scrubbing pots and pans, caked with mud. Two days ago, Winifred told the head of the household she needed to make a latrine, and two days later, I peered down into a 10 foot hole and saw for myself. The cement would be arriving in 1-2 days from town. I asked Edward, my Ugandan counterpart/boss what makes some VHT’s persuasive and other’s not. He said that she had “great counseling skills.” I probed further but couldn’t get anything else out of him. Some things you just have to see, I suppose. The writer in me wants to go off – she possessed a quiet tenacity, an uncompromising will, an unflinching moral compass. Or, to put it simply, Winifred is one of those people who gets shit done.

In truth, she does have a quiet tenacity. She called me yesterday to explain that she had the results from her testing, and wanted to discuss them with me. I invited her to the OmniMed office, where I read the physician’s inscrutable and sparse differential: rule out cardiac disease. I then took my own history, which lasted at least 45 minutes. With no access to laboratory testing, she is a medical puzzle to me – status post diagnosed malaria 3 weeks ago, treated with Coartem, normal fasting blood sugar, 3 years of general weakness and fatigue, 4 years of intermittent, non-radiating, reproducible and non-reproducible chest pain, sometimes associated with eating, difficulty swallowing liquids and solids for one year, polyuria for three years, and painless vaginal bleeding for three weeks.

Every time I tried to summarize the case, a new symptom seemed to pop up, with no single diagnosis tying everything together. In the US, I would have had twenty minutes for the history, which I most likely would have performed with the luxury of first skimming the notes of an ER doctor and nurse, and seeing what immediate labs had been ordered. I then would have spent the day tracking down specialists and lab results. Fortunately, the head of OmniMed is coming tomorrow, who is an emergency room attending, and he will hopefully encourage her to find the funds to get to Kampala for more testing. But what quality of care does one get in a city hospital of 3,000 beds, in a country with a life-expectancy of under sixty years old? To see Winifred’s sickness as injustice is to me both inevitable and non-explanatory. On the first point, through what other lens than justice can one view saving money month after month for piecemeal test after test? On the second point, the fact of injustice in and of itself does nothing to identify the multitude of causes. And here’s the kicker, identifying a multitude of causes does nothing to help Winifred get the money to go to Kampala tomorrow.

I will take my own bait – Winifred is more than sum of her symptoms, but not in the way of the cliché above. Winifred’s case illustrates the uncertain medical fate of those who are not sick enough, or have enough money to be on the hospital wards. In epidemiology, it is called lead-time bias when the discovery of a screening tool markedly increases the lifespan of those with the disease – not in virtue of any life-saving properties of the screening test; rather, the test enables people to be screened sooner in than they normally would, and thus, live longer after the test. For every ten Winifred’s, only a handful show up in hospital or clinic data, thereby skewing this data. So now this is a case about epidemiology, lack of health care infrastructure, economics, injustice and yes, pathology. I end with this multiplicity because bringing it back to the human is scary – that I can look up all the pathology I want, but this does not guarantee she will have access to any tests, let alone treatments she needs.

But maybe my organization can employ a few more people, who gather data from the VHT superstar’s, volunteer at the health center, become nurses, get elected to local office, find better ways to access basic medical care, get support from US medical students, and so on. For sociopolitical problem, sociopolitical solutions, right? What are incremental steps to building health care infrastructure in developing countries? Is it possible to provide specialty-driven Western medical care through technology and partnership? We know that economic inequity is inversely correlated with health outcomes. But, will building the economic ladder spur health care gain more quickly than health care investment alone? What do you think? What are your personal, academic, professional experiences? What have you, would you read?

Kisoga

We arrive in Kisoga, sky clear and sun blazing. Twenty people gather under the shade of the church tin roof. Some prefer benches, made of bare-bones supplies – thin slabs of wood, a few nails, and penned graffiti on the back, Other benches bear the mark of charitable organizations – “this was donated by xyz foundation.” One hears that time moves slowly in Africa, as if this is a statement of incontrovertible fact to everyone in the country. This is not true for Isiah. A fisherman and farmer from Tererre parish, Isiah awoke at 6am to take a boda-boda (motorcycle) – “just to wait here!” The training was slated to begin at 8am, and it is now approaching 10am. Isiah’s shoulders fall at right angles from his enormous upper frame, his smile wide and infectious. He walks with a dance-like movement, as if he uses his immense arm strength to impel him forward. A physician may say it is choreoiform or antalgic, and then upon examination notice the etiology – born with club feet that have never been corrected. While sitting, one notices that the soles of his feet face upward, toes pointing in.

Today we are observing the training for drug distribution of malaria by the Ministry of Health. The program formally began in 2009 but has only begun to have funds. The idea is simple: give a two-day training course to existing village health workers to give Coartem (an anti-malarial drug) to people with symptoms of malaria, prior to referral to the health center. There is scientific rationale for this strategy – a study in Egypt showed that teaching village health workers to give ORS (oral rehydration solution) for diarrhea reduced infant mortality by 50%. The organization I am working for uses the nomenclature VHT, which technically stands for Village Health Team, in reference to community mobilization of a village. The trainees, however, refer to themselves as VHT’s. Our model closely parallels those of CHW’s (community health workers). Uganda has trained over 80,000 VHT’s since 2002, with variable success, depending of course, on how you define success. On the epidemiologic level, there is little data that the comprehensive program has produced significant reduction in malaria, infant mortality, life expectancy. On the local level, there are pockets of trained villages which have shown incredible gains in water sanitation. On a human level, the programs have allowed people with minimal education and income the opportunity to be elected by fellow villagers and to serve their communities.

In the literature, researchers denote the difference between tangibles and intangibles. For health workers, they have found, much to the chagrin of the epidemiologists, that the intangibles win out. Health workers are motivated by extrinsic, tangible factors such as monetary incentives or bicycles, but even more than this, by rigorous, structured trainings, and feeling a responsibility for their community. I am reminded of the work of James Landes, a historian who laments the absence of considering “culture” as a decisive force in economic history (The Wealth and Poverty of Nations). I am working for an organization called OmniMed that has trained over 400 VHT’s, and is in the process of systematizing how we follow –up and support them. One of our tasks in the next year is to develop an incentive system to encourage VHT’s to visit all the homes in their village, deliver health reports, and volunteer at their health centers. I often coerce myself into thinking this should be easy – after all, I know what the science says. Incentives work best when tangible and intangible rewards are coupled, financial incentives work in the short term but lose out if funding runs out. Why can’t we just write a check, buy some bicycles for the village with the best record keeping, and then run some more follow-up meetings and see what happens? My educational background has primed me for such trial and error methods. Perform poorly on a test – radically change your study plan and see what happens. I am also primed to think “strategically,” which oftentimes means to fall into the fallacy of premature closure. One of my professors in medical school often told me, with authority, to write these two words on my palm prior to examining a patient – the premise being, do not fit all of the patients symptoms into one disease, thereby excluding other disease categories from your thought process.

Here, it is enticing to read a few papers on community health, and then try a solution. I believe this has been tried in other places, and contributes to the unintended consequences such as people selling malaria nets for food, or developing malnutrition due to over-reliance on foreign food subsidies and lack of local agricultural development. So, back to the bicycles. What do the villages think about being in competition with one another? Would giving certain individuals bicycles create a hierarchy between villagers? These are questions that can only be approached with trust, over time, and with commitment to the same goals.

Yesterday I visited the local health center to try to forge connections between our program of US volunteers, VHT’s, and health center staff. We created some preliminary plans, for US volunteers to give talks at the health center, for the VHT’s to have monthly meetings at the health center, and for the health center to use data from VHT’s (i.e. on number of cases of malaria in household, or the number of unprotected water sources). Of everyone in the room, I was the most transitory – I was accompanied by Edward, who is from this village, and has been working as a drug distributor and VHT trainer for many years, as well as a Peace Corps Volunteer, who will be working here for another year. I am amazed by each of them - Edward for his big brain and dedication and the Peace Corps volunteer for her commitment to understand before acting, and to ask questions of everyone she comes across.

Right now, over 40 VHT’s have gathered and are intently listening to the presenter talk about malaria. They take notes in little blue books like the ones from high school. Edward is next to me and helping translate. He knows this backward and forward, but continues to take detailed notes. He writes “3 places where mosquitos bread,” and I tell him the difference between “breed” and “bread.” He is one of those people who do not laugh, but chuckles ---with a light “kee-kee-kee” from the back of his throat. We are going over myths about the causes of malaria, a topic the VHT’s know very well. The most common myths are “eating mangoes, maize, witchcraft, and sleeping in the sunshine.” In an hour, lunch, and then another four hours of presentations, which will drag but be punctuated by bouts of unexpected hilarity. Time moves the same here, but people understand that change is made “empola empola” – slowly by slowly.

Off to Uganda

I'm going away for seven weeks to do work with a great organization called OmniMed (www.omnimed.org) I will be helping to train Village Health Workers and strengthen educational programming. My aunt gave me this quote which I thought was perfect before leaving.

My love is my weight.
By it I am carried.
wherever I am carried.

St. Augustine

Book Review: Absence of Mind (by Marilynne Robinson)

If there ever was a book to break the stale, polarized, and argumentative debate over science and religion, this is it. Marilynne Robinson writes primarily from the standpoint of a humanist, well-versed in the history of scientitic thought, Western philosophy, and the recent proliferation of books either uniting or fractioning science from religion. Although “Absence of Mind” could fit easily in ones’ back pocket, each page packs a seminar’s worth of weighty ideas. Robinson’s project is to provide an account of the origins of Western conception of science, and to dismantle any attempt to take science beyond its’ appropriate referents. In other words (watch out… spolier alert), Robinson’s project is not to assert a fundamental incompatibility of science and religion, but more to rein in scientists who uncautiously tread in religious territory.

Her title could be construed as a tongue-in-cheek chide on the Daniel Dennet’s of the world – but it makes more sense within the work as a totality. She ascribes to William James’s conception of religion as internal experince, and firmly believes “religion is indisputably a central factor in any account of the character and workings of the human mind.” (12) Tracing scientific thought from the 19th century to present, she details how scientific thinkers have evaded treating the mind to the same scientific rigor as the physical universe. Perhaps more profoundly, she cites our modern complicity in this interpretation, noting our adulation of theories that are ahistorical and explain the self as understandable via universals, whether class struggle (Marx), Oedipal complex (Freud), or evolution (Darwin).

Robinson’s tight, graceful, and witty prose works like a scalpel on conventional attacks on religion by new-age science writers. Ever wondered whether religion can be explained as a social phenomenon that evolved by virtue of close-kinship and ceremony? Whether contemporary knowledge of brain chemistry excludes the possibility of a mind/soul? Or, whether our ability to ask questions about imponderables such as truth, meaning, and reality is an evolutionary by-product, or an intrinsic part of being human? Time and again, Robinson answers such questions by deconstruction, paying close attention to unstated assumptions of scientisists. If she can be described as pushing an agenda, it is to force us to indulge, if briefly, in ambiguity. She often offers two interpretations, a scientific and humanist account, and leaves us to fend for ourselves. In response to Steven Pinker’s materialist view of the brain, she writes,

What is man? One answer on offer is, An organism whose haunting questions perhaps ought not to be meaningful to the organ that generates them, lacking as it is in any means of ‘solving them.’ Another answer might be, It is still too soon to tell. We might be the creature who brings life on this planet to an end, and we might be the creature who awakens to the privileges that inhere in our nature – selfhood, consciousness, even our biologically anomalous craving for ‘the truth’ – and enjoys and enhances them. (130)

Her point could be boiled down to: scientists should stick to doing science, instead of asnwering philosophy questions with worn scientific assumptions. And the rest of us could do well to honor our inner experiences, affirming a humanity science has yet to fully explain.


Some of my favorite quotes below...

On accident versus intentionality:
“Why is the human brain the most complex object known to exist in the universe? Because the elaborations of the mammalian brain that promoted the survival of the organism overshot the mark in our case. Or because it is intrinsic to our role in the universe as thinkers and perceivers, participants in a singular capacity for wonder as well as comprehension.” (72)

On Freud:
“Notably, he [Freud] attempted to redefine the unconsious, a concept then broadly associated with primitive racial and national identity, making it instead a force in a universal yet radically interior dynamic of self.” (107)

University Park School, Worcester MA

Today I visited University Park School in Worcester (http://www.upcsinstitute.org/), a unique and innovative model of a high-achieving public school. The school began in 1997 as a neighborhood school in the area of Clark University, a lower class area flanked by Main Street. The school is grades 7-12, has approximately 40 students per grade, and receives funding as a public school of Worcester. All 11th and 12th graders who have access to the full course cataogue at Clark, and those accepted to Clark receive four-year free tuition. Since opening, 95% all graduates have attended college.

In first period, I sat in on an anatomy and physiology class for seniors. I gave a short presentation on requirements of medical school, and then mingled among groups. Toward the end of class, I came to a group of four boys, each of a different nationality, working on an assignment of respiratory physiology. I asked them what they enjoyed about the school. They responded in unison that they loved the partnering with outside agencies (such as a job creation program) that landed them high-paying summer internships. We moved on to discuss the partnership with Clark – a wiry, athletic student commented “We had a professor who taught us all about sociology, a class called Understanding Poverty. I don’t think he knew what he was talking about.” On further questioning, this student outlined the academic argument that to get out of poverty one needs one of the following factors: a god-given talent, to marry into more money, more education. The student became agitated even broaching this subject: “what does he know about poverty? He has never lived it. Maybe this is the conservative in me, but I think that what it takes is hard work.” I wondered aloud how much of his conservatism was experiential versus political.” With his classmates working silently beside him, the student outlined his family’s move out of generational poverty. In telling this narrative, he prioritized hard work and determination.

I am inspired that this eighteen year-old, with no access to higher education in his family, had the opportunity to be exposed to academic literature on poverty in America. I am inspired that he felt confident to openly challenge a professor, and offer his story to his peers. I am also inspired by the partnership itself. In my work with students in St. Louis, I described the path to college primarily within the narrative of socioeconomic opportunity. Hard work = college = success. Ironically, I think that for this student, exposure to the theory of academia forced him to challenge this narrative, and to begin to ask more nuanced questions. What does it mean to study poverty without physically stepping foot in one’s community? On an educational level, how can one teach students both self-determination and the socio-economic determinants of poverty and health?

I am sure of the following after my visit today: I have no desire to teach middle school students, I am inspired by the possibility of teaching high school again, as a vocation or as a collaborater with medical schools and undergraduate schools.