The Future of Medical Research


About a year and a half ago, as I began to read into the long history behind the Epidemiology movement and the Evidence-Based Medicine debates, I told my husband that the real problem was not that we were too empirical (which is what many argue is wrong with EBM philosophy). I argued that our problem was that we have been ascribing god-like powers to a test, which in all actuality, tells us almost nothing about the human body, the way it works, and how it’s affected by intervension. The test I’m referring to is the Randomized Control Clinical Trial (RCT).

Although Epidemiology was not in any way founded on RCTs, the field quickly moved to argue that, for clinical and policy purposes, decision making should be primarily informed by double-blind epmirical trials in which a large, diverse group of people (think thousands) takes a particular drug and is monitored over a long period of time for particular results; that group is then compared to a large contol group, who takes a plecibo. The results of these studies indicate the general effects of a drug, what it does and doesn’t accomplish based on its goals, and weather it’s safe enough to hit the market. The trial also shapes how the drug will be marketed, to what group, and with what exceptions, potential side effects, etc. The same process applies to new forms of medical technology, tests, treatments, and interventions.

The long standing criticisms of RCTs are fairly consistent:

1) They can only measure what they set out to measure. If they want to see if a drug lowers blood pressure, they measure blood preassure. They don’t measure how blood pressure and the drug, interacts with each patient’s diet, their history of  smoking, the fact that they mothered x amount of children, or have a predisposition to breast cancer.  That would take way too much money and more data collection than is reasonable a trial. As a result . . .

2) Trial results have to make massive generalizations which don’t account for the innumerable varieties of reactions and interactions people experience physiologically and otherwise while on the tested drug, and dozens of other drugs.

3) Most tests are conducted by companies trying to sell a product; this means that pharmaceutical companies conducting studies have an incentive to ignore unfavorable information and isolate data and results which will ensure their product sells.

4) They test interventions; they don’t actually study how the body works. Yes, taking a pill is one way to fix something. But figuring out how complex systems interact to predispose a person to a disease might be more productive. caveat: Although much research is dedicated to how the body works, at the moment, RCTs only allow us to test a few correlations at a time–eg: the correlation between sodium intake and obesity; NOT not all the various factors which have contributed to various individual’s obesity throughout the nation.

5) Clinical Trials don’t help doctors make decisions. This has been the major complaint of those who founded the field of epidemiology in the first place (Daly). The incredibly generalized results of RCTs don’t necessarily help a doctor decide if a particular drug or test will help their particular patient. They DO help narrow the playing field (75% of the time, Drug x works better than Drug y; but Drug y is much cheaper); but the complexity of each patient is so extreme, that doctors really need more detailed information than RCTs can offer–and that usually only comes with experience (eg: historically, I have found that patients who take drug x and are also on antidepressant y, have problems with impotence, which causes them to stop taking drug x after so many weeks, before the treatment takes effect. Therefore, treatment z will probably be better for them because they’re most likely to complete the treatment).

Back to my story.

What I told my husband that day when I was beginning to process all this information was this: we need to revolutionize the way that we’re doing medical research.Rather than isolating particular questions and testing for a few correlations cut off from all other factors, we should be finding ways to do massive data collection about the detailed intricacies of the body, and mapping that data for patterns and coorelations within particular patient populations.

We need to use complex, convenient monitoring systems which will track hundreds of thousands of minor reactions and systems in the human body on a moment by moment basis, as people function within their own environments; and then–utilizing the storage and data-analysis technologies used by search-engines to navigate oceans of information on the internet, and the super computers which perform calculations humans can’t even attempt–we should be looking for patterns in that data which explain how individual’s physiological system’s work, how diseases develop, and in what conditions.

We cold take a huge sample of subjects form a single population with a disease like prostate cancer, or living in a particular area, or with a particular medical history, and monitor their physiology for however long seemed necessary, looking for what they have in common, and what they don’t. That’s how we should be doing research.

Considering what technology has accomplished over the past few decades, and looking to what potential the future holds, RCTs honestly look like something out of the stone age. We could be doing so much better. The key is combining complexity, technology, and, well, lots and lots of money.

I was thrilled, today, to find that there is a doctor who has been making the exact same argument. 

One of the top ten most cited researchers in medicine, and Professor of Genomics, the Scripps Research Institute, Cardiologist and Geneticist Eric Topol has the support of medical institutes, philosophers, medical educators, policy makers, research laboratories, technicians, politicians, clinicians, and me. His book, The Creative Destruction of Medicine: How the Digital Revolution will Create Better Health Care(Jan 2012) imagines a future in which the technologies we have devloped for personal and commercial use will be used to understand physiology in a way “that will make the evidence-based state-of-the-art stuff look” primitive,

“. . .by bringing the era of big data to the clinic, laboratory, and hospital, with wearable sensors, smartphone apps, and whole-genome scans providing the raw materials for a revolution. Combining all the data those tools can provide will give us a complete and continuously updated picture of every patient, changing everything from the treatment of disease, to the prolonging of health, to the development of new treatments.”

He specifically suggests how existing medical and information technologies can be used and further developed to achieve a new level of health research:

“At home brain-monitors helping us improve our sleep. Sensors to track all vital signs, catching everything from high blood pressure to low blood sugar to heart arrhythmia without invasive measurements to inconvenient and nerve-wracking—or even dangerous—hospital stays (which kill some 100,000 every year, due to infections caught there, or patients getting someone else’s medicine). Improved imaging techniques and the latest in printing technology are beginning to enable us to print new organs, rather than looking for donors. Genetics can reveal who might be helped by a drug, unaffected by it, or even killed by it, helping avoid problems as were seen with Vioxx.”

I was also pleased to find that Topol addresses some of  the major problems that will accompany future technologies, such as privacy and protection issues, genetic planning decisions, and the potential for depersonalized care. However, he also emphasizes the potential for individuation and personalization that these technologies could bring to clinical care, as well.

A few prememtive clarifications

Many in the medical and scientific humanities would point to my enthusiasm as reinforcing the, “science just needs to be better” philosophy in which empiricism is the answer to everything; the belief that if we just measured a little closer, controlled nature a bit better, we could master it and all our problems. That is not what I believe. On the contrary, I believe that the more humans stand in awe of natural creation–in which we ourselves beautifully and mysteriously embedded–the more we will realize that we can never control it, and the more we will desire to understand  it better. As a vitalist, new materialist, and complexity theorist, I believe that empiricism has been based on the concept that our world is linear, strait forward, simple, and masterable. I believe that methods such as the ones I’ve described here acknowledge the fact that this is not the case–that there more more connections, interactions, and vital processes than we could ever imagine or count, but that they are worthy of our attention and investigation all the same.

Lastly, and perhaps most importantly, I don’t want to ignore the serious ethical and social problems that litterally flood my mind as I consider future directions in medical technology. The fact that technology, medicine, and research are so largely privatized and commercialized obviously has difficult implications. History suggests that human social complexity necessarily includes corruption, error, over-confidence in human ability, greed, race, class and gender stratification, and oppression; innovation and power, network into nodes which disadvantage the majority of the human population. I don’t believe that science has the power to, or will solve, all our greatest needs and problems. I do think, however, that human innovation is remarkable and should be developed–with as much ethical contemplation, caution, and will toward justice as possible. Even philosophers have a part to play in the network formations of the future.

Semester Reflection: Research Requires Risk

As hard to believe as it is, the semester is over. Almost. And lots of studies show that reflection is a beneficial method for transfering knowledge. Soooo, Here we go for transfer: Three global principles I learned from this class.

1. Scholarship works with texts, scientific research works with numbers, and qualitative research works with faces. Now, this is a huge generalization–but I think it works. If we put these three on a continuum, qualitative work would be in the middle (obviously), and can include either of the other two.

2. I have developed a pragmatic definition of research that is situational and rhetorical, but which I am still devleoping, and would like feedback on.

According to IRB, research can be generalized to larger populations. What it doesn’t specify is, to how great of a larger population? I think that any larger population will do, but the size of that generalizable population will effect how much respect/clout/funding the research will get. For example, a study which claims to be applicable to all college students in the nation (Academically Adrift) will necessarily get more attention, funding, and respect than a study by a WPA which will benefit the six other writing teachers in the nation who are seeking to create an honors composition course in collaboration with a musicologist. Both studies ask valid questions (what works?) both may use controlled environments and methods to seek an answer to that question through various complexities of coorilations, and both will produce data that will in turn (when interpreted) create knowledge which can be put to use by others.

The amount of people the research serves doesn’t necessarily determine its innate value or validity…to those for whom it is useful. One helps more people, but the other helps people that could never be helped by a gigantic study of large populations. The later need a study which examines the nuances of “how things work” (to use Stakes’ definition of qualitative research). And, there are also many types of quantiative or scientific research which deal with qualitative information/data before working the numbers. So, there is a place for them both. But, incase you thought I was being too accepting:

3. I do not believe that what Rhodes calls “psychography” (proto-ethnographies which are more interested in telling a narrative which proves a hypothis than they are in conveying longitudinal experiences had in immersive evironments) I don’t believe that psychographies are research. I believe they are scholarship. Scholarship looks at texts and works to determine their meaning by comparing them with other texts and theories of texts–including critical/cultural theory. As a student of literary, cultural, and textual studies, I love scholarship, and do not contest it’s value. But there’s something research has which scholarship doesn’t, and that’s risk. At the end of the day, the worst thing that can happen in scholarship is that you can miss your deadline, or not get published (maybe loose tenure). However, in an inquiry based study, your hypothesis could be proven wrong, you could not find the answer, or your data could contradict the theoretical framework you set out to prove. And you would still report these findings. That doesn’t happen in scholarship. In scholarship, you can simply write about your topic from a different angle or use a different theorist, or just not publish. This may not be a good way to divide up types of knowledge-formation, but something in my gut tells me that this is an important factor. The rhetorical risk of inquiry matters in the way that it is composed–that’s my hypothesis. Thoughts?

In other news . . .

Because I really like longitudinal, qualitative research, I had felt at the beginning of the semester that immersive ethnography was the only type of qualitative research I could do. But hearing Hiedie McKee say, over skype last week, “why would I be reading about this, when I could be talking to these people?” made me realize that I didn’t have to do a full-scale ethnography to find valuable information, and I didn’t have to do my research all at once. I can begin by “talking to” some of the people I respect and want to understand. I can begin exploring without being Ms. Mega-Awesome, and Perfect Super-Researcher (and yes, I do feel that we read a few of those: Heath, Boyd, Caroll, etc). This was an exciting and refreshing revelation.

Top Readings:

Robert Brooke, “Ethnographic Writing” from Voices and Visions

Digital Writing Research: Technologies, Methodologies, and Ethical Issues edited by McKee and DeVoss

Jerremy Tirell’s dissertation, “Mapping a Geographical History of Digital Technology in Rhetoric and Composition.”

Dana Boyd’s dissertation, “Taken out of Context”

Other’s favorites: Stake’s Qualitative Research, Lee Ann Caroll’s Rehearsing New Roles, Heath (how can you not?) ,

Favorite Skype Visiting Author: Katherine Kelleher Sohn

Stanford Study, Compositionism, and Ethics and Representation

If only every research project every conducted would publish their results in the organized and open format that Stanford has with their famous Stanford Study of Writing, which can be found here. All their methodological materials are available, for those who might wish to reproduce the study, and their background, methods, and research question are summarized in short, two-paragraph sections: Brilliant. Imagine what the field of (college) writing/composition would be if every major institution conducted the same study, maintained the same database–the knowledge accumulated would be fantastic. Here’s a cheers to rigorous, longitudinal methods of research.

An article in the Chronicle of Higher Education provides a nice overview of the study’s reception as of 2009. In it, Josh Keller reference Katherine Blake Yancy, “a professor of English at Florida State University and a former president of the National Council of Teachers of English, [who] calls the current period ‘the age of composition’ because, she says, new technologies are driving a greater number of people to compose with words and other media than ever before.”  This is view is echoed by Bruno Latour in his article, “An Attempt at Writing a ‘Compositionist Manifesto'”, based on speech given at the  reception of the Kulturpreis presented by the University of Munich on February 9th, 2010. He argues that Compositionism may be an apt successor to the PostModern movement. Compositionism, he says,

“…underlines that things have to be put together (Latin componere) while retaining their heterogeneity. Also, it is connected with composure; it has a clear root in art, painting, music, theater, dance, and thus is associated with choreography and scenography; it is not too far from “compromise” and “compromising”  retaining with it a certain diplomatic and prudential flavor. Speaking of flavor, it carries with it the pungent but ecologically correct smell of “compost”, itself due to the active “de-composition” of many invisible agents…Above all, a composition can fail and thus retain what is most important in the notion of  constructivism (a label which I could have used as well, had it not been already taken by art history). It thus draws attention away from the irrelevant difference between what is constructed and what is not constructed, toward the crucial difference between what is  well or  badly constructed,  well or  badly composed. What is to be composed may, at any point, be decomposed.” (3)

Perhaps, if we can conduct more studies such as Stanford’s, which continue to investigate the multifaceted dynamics of writing, theories of composition might be generated which could in tern be applied to other disciplines’ generation and arrangement of knowledge, the way that Bruno Latour, and new media theorists’ have.

Although published in 1996, Ethics and Representation in Qualitative Studies of Literacy offers an excellent array of discussion on the classic qualitative methods issues, from seminal voices such as Patricia A. Sullivan and Lucille Parkinson McCarthy. Perhaps one of the most applicable chapters for my own future research was Blakeslee, Cole and Conefrey’s piece on negotiating subjective perspectives within ethnographic research (chapter 8), particularly when studying a community whose epistemological assumptions are foundationally different than the researcher’s. They used Blakeslee’s own experience researching physicists as a case study, particularly considering authority, scientific epistemology and how a text can be negotiated to ethically reflect the perspective of both the subject and the theories of the critic/observer. Like Sullivan (and Porter), the authors of this chapter acknowledge the fact that ethnographers can be neither fully authoritative, nor fully objective in analyzing their observations, but must acknowledge their subjective perspective and rely on others to produce an ethical, textual representation. My own study of the medical community will draw from these concepts.

Experimenting with Mixed Methods: Tinberg and Nadeau’s Study of Student Expectations

I was pleasantly surprised by how much I enjoyed Tinberg and Nabeau’s study on The Community College Writer: Exceeding Expectations. Theirs is a fairly broad investigation into the challenges facing first year college students, but essentially tries to understand how first year composition student’s experiences prior to and during their first semester in college matches up to their various teacher’s expectations .

The literature review and methods were both very helpful to me in demonstrating the process of composition research. Those who know me will not be surprised to hear that I particularly enjoyed their combination of ethnographic and social-studies research methods. On page 17, Tinberg and Nabeau explain that their “purpose . . . is primarily descriptive: we intend to account for the nature of student writing tasks at college–and the degree of success achieved in meeting the writing challenge”; yet, in their literature review, they acknowledge that “research can be and out to be conducted on a scientific [read, positivist] basis, while at the same time grounded in specific writing situations” (15). Elaborating on what they mean by scientific: “producing replicable, well-designed research studies” which they hope to balance with “reproducing the specific and localized scene of writing.”

The question is, do their methods successfully facilitate this dual desire? I believe that the study does indeed produce valuable knowledge from which other institutions may glean applicable information for their own curricular design; however, I also believe that certain aspects of their methods could have been refined in order to ensure more consistently generalizable results.

For example: admirably, Tinberg and Nadeau administered their first student survey at four different institutions, in four different states. This was, in my opinion, very impressive in light of comp. research norms. However, their student cohort, from which the bulk of the study data was truly derived, was comprised of students only from BCC (Bristol Community College).

I think that because the study focused so much on the past experience of students, and particularly because the primary data was gathered at a community college, where students will most likely all be coming from one very specific town, city, or location, the data would have been much more generalizable if the PIs had followed through with their ambition to survey four very different institutions in four very different locations.

Tirrell’s Historiographic Cartography of Rhet/Comp

Text

Tirrell, Jeremy. “Mapping a Geographical History of Digital Technology in Rhetoric and Composition.” Diss. University of North Carolina at Wilmington, 2009. Dissertations and Abstracts International. ProQuest. Web. 20 Feb. 2011.

Purpose, Genre, and Format

A Proof-of-Concept Dissertation, which provides a pragmatic demonstration of a theoretical claim, using a quantitative study.

Historiography in the format of a Social Science Study (Introduction, Methods, Findings, Discussion, Conclusion), accompanied by a the Digital Rendering of the collected Data–the proof of concept itself.

Methods of Data Collection, Representation & Interpretation

Written from a data perspective, using theorists’ “functional concepts and techniques” useful to his project, but not attempting to defend any particular philosophical stance (47). He pulls from English studies, Digital Media studies, Geographic and Architectural studies.

Did an analysis of six Composition journals related to digital technology, quantifying the significant, recurring terms which appeared in all issues between 1994-2008.

The journals are Computers and Composition Online, Currents in Electronic Literacy, Enculturation, Kairos, PRE/TEXT: Electra(Lite), The Writing Instructor.

Created two, integrated, thematic maps, using GoogleEarth platform,
representing two diachronic sets of data:

  1. a proportional point symbol map that plots the location and magnitude of relevant data
  2. a concept magnitude map that tracks the distribution and prominence of recurrent terms

Information can be viewed in layers, or all at once, and all data is plotted by year, so the viewer can slide the “time line” left and right to watch how the data changes threw time.

The map is dynamic and interactive, in that the audience can explore the data in different levels, and also in that data can be added to the system, in order to extend and continue the research and its rendering.

All data is publicly accessible in both online and offline formats. The Online Map location is http://www.mappingrc.com (however, the site expired on 2/27/2011).

Research Question/Concept Being Proven

Digital mapping technology offers us a new way of studying histories. In particular, the graphic representation of quantitative data can produce a qualitative understanding of historiography, which is impossible for solely textual work. While textual  historiography is limited to linear narrative-making through the close reading of people and events, digital mapping, although not superior to qualitative inquiry, provides valuable knowledge-making, by rendering a distant reading of multiple events and histories simultaneously (36).

Audience

Three very broad audiences

1. Rhetoric and Composition Scholars and Instructors: need to know our history of engagement with digital technology

2. Researchers: can adapt method of digital mapping

3. Administrators: can use map of department’s geographical diversity as evidence of institutional value

His literature reviews are primarily targeted to 1) Rhetoric and Composition–doing a lengthy review of the discussion surrounding historiography of Rhet/Comp and 2) Researchers and digital cartographers–with extensive review in the Methods section regarding cartography and the digital mapping of quantitative research.

Doesn’t assume that his audience has any background in digital cartography and the types of digital projects available online.

Grounding the Need for his Research

Tirrell goes to great lengths to argue for and demonstrate the use of his project on various levels. He does this by:

  • providing past precedents of very significant geographic mapping projects used by academics, the government, and grass-roots communities;
  • Citing philosophers and scholars within Rhetoric, Composition, Literature, and the Humanities who argue for the need of quantitative studies of the humanities and their history
  • Providing elaborate description of Rhet/Comp’s debates regarding the rhetorical nature of history, and history writing, arguing that his methods will provide a new and valuable form of historiography, which will practically benefit the field, as well as other fields in the humanities.

Epistemology

Post-Epistemology, or Rhetorical Epistemology, meaning that Tirrell rejects the post-positivist belief in a subject/representation divide or dichotomy (46).

For Tirrell, there is a real word which can be accurately known through quantitative measures. At the same time, he supports the fact that all knowledge production: textual, graphical, linear or simultaneous, is rhetorical in nature–meaning that the selection of information in necessary in any explanation, argument, or investigation human’s conduct.

He claims that histories usually privilege time and people as actors, largely because of the history’s grounding in text, and the need to therefore create a unifying, linear narrative, which cannot represent space. Tirrell suggest that geographic studies using quantitative data can tell more multiple histories, by showing where ideas appear and how they move over time. In this way, space becomes an active element of history, rather than a neutral container for human and temporal action.

Tirrell eschews the question of how we know and interpretation, however, by refusing to address the issue of causation, in favor of simply providing factual information which reveals correlation. He does not attempt to explain or investigate the material situations within the various locations he maps, but simply displays who said what, when.

What I’ve Learned from this Project

  1. A dissertation allows one to make many, many, arguments, about different topics, communities, conversations, and methods. This is accomplished by addressing your project in layers, and by providing the appropriate literature reviews for the various topics and communities you desire to speak to.
  2. Literature Reviews should be proportionate to the audiences you desire to attract/appeal to.
  3. Mixed methodology is accepted and encouraged within the Rhet/Comp field, especially when enacted in a meticulously thorough manner.
  4. Rhet/Comp researchers can build investigative tools which they intend to be used and revised by future scholars–COOL!
  5. If you are attempting to address several audience which would be considered interdisciplinary with your study, there will be large portions of your study which will be uninteresting to some of your audience members. The trick is to demonstrate that although some of your research may not be in a given audience one of your audience’s field, it is still rigorous, and relevant to the field.

Brooke and Latourean Inscription in Ethnographic Methods

Robert Brook’s chapter in Voices and Visions, entitled “Ethnographic Practice as a Means of Invention, Seeking a Rhetorical Paradigm for Ethnographic Writing” has no doubt been my favorite reading in methods of research thus far. As always, I find that Latour’s philosophy clearly elucidates the practice and process of research, especially as it relates to texts. Brooke uses Latour’s concept of inscription to describe three key moments in his composition process where the observation and articulation of his subjects was crucially shaped by his rhetorical needs and goals.

1) In his observation notebook, Brooke found that his comments about and vision of the classroom he observed were selective, based on a set of categories (heuristic topoi) which he was predisposed to conceive of, based on his field, past readings, and conversations with his teacher-subject.  In other words, his inventive process, by which he explored particular ways of understanding his subject, shaped how he observed and specifically, what he wrote down in his journal.

2) His daily notes, written after each observation, revealed Brooke’s attempts at meaning-making through writing, by more clearly organizing his observations into patterns, interpreting behaviors, making predictions, and labeling phenomena based on theoretical topoi.

3) A year later, Brooke’s composition of a CCC article from his data, involved negotiating meaning out of a tension between his own memory of an event, his data, and a very specific audience, while simultaneously trying to locate himself within the discipline to which he is speaking. These tensions actively shaped the articulation of his observations, his theoretical basis, and his argument.

I so appreciate the emphasis Brooke places on the difficulty these negotiations create for the author, who is attempting to condense, refine and sharpen meaning from such a vast body of observations, experiences, and thoughts. This is especially so, notes Brooke, for the ethnographer trying to speak to two separate audiences: an academic discourse community, and the community who was observed.

This last section of the article reminded me very much of two other texts: Dian Davis’s introduction to Inessential Solidarity, in which she meditates on the impossibility of scholarly conventions in the face of discussing metaphysical ethics, and Annemarie Mol’s book, The Body Multiple, in which she splits her text into two, simultaneous, parallel sections in an effort to address adequately both her ethnographic observations (placed on the top half) and the literature of theory and methodology (placed on the bottom). Such an extreme bifurcation of composition is the perfect example of the incredible tearing that the tensions Brooke describes can lead to within the writer’s mind–and I think Mol’s solution is a very creative and effectual one.

Another aspect of Brooke’s work which helped me, as an aspiring researcher, was the “behind the scenes” look that “Ethnographic Practice as a Means of Invention” gave, after having read “Underlife and Writing Instruction.” Although most ethnographies lay out their methods, I still feel there is a lot of process which is left like “the man behind the curtain” which the reader can only guess at (unless you’re Brooke, who like Toto goes and tears the curtain down!). Brooke’s three moments of inscription gave me a much clearer idea of what my own process of observation and composition might look like, on a practical level, while conducting a study. Additionally, his literature review in the beginning of the chapter is the most simply and clearly graphed picture of the field I’ve read yet.

Narrative Based Healthcare

Searching around Amazon to find out what’s been published on Medical Rhetoric, I came across this 2003, London-based study/workbook that aims to provide healthcare professionals with a model for investigating the needs of the patients in order to improve their services: Narrative Based Healthcare:Sharing Stories–A Multiprofessional Workbook.

The book shows how collecting ethnographic-like qualitative  data about Diabetes patients with a particular condition can be translated into meeting the needs of patients who, ordinarily, in a clinical setting, are not able to communicate those needs to health professionals.

I haven’t read the book, but I’m going to find a copy; it provides specific assignments, templates, and further reading, so I’m considering looking at it as an example of qualitative research in Medical Rhetoric/Communications.

The publisher, BMJ Books, produces medical text books in primary care and evidence based medicine (EBM). The first author, Trisha Greenhalgh, has written many books on these two topics as well as technical writing types of text books such as How to Read a Paper, a bestselling EBM textbook worldwide.