published quarterly by the university of borås, sweden

vol. 24 no. 4, December, 2019

Proceedings of the Tenth International Conference on Conceptions of Library and Information Science, Ljubljana, Slovenia, June 16-19, 2019

'What is (a) disease?' Disease as events and access to information

Ronald E. Day and Robert D. Montoya.

Introduction. This paper outlines how classes of diseases are dependent on social, cultural, as well as physical dispositions and contingent affordances (events). They are part of an assemblage of components (social, technical, intellectual, disciplinary, etc.) that come together to create historically situated notions of what it means to have a disease. This complexity is often obfuscated from a patient. Access to authoritative and balanced knowledge that leads to an informed sense of the contingency of the category of disease is a social justice issue that merits more examination.
Method. An autoethnographic case study is presented. The case illustrates a patient's experience with hip disease diagnoses and reveals how complex disease categories are articulated.
Results. Ready access to accurate and transparent information sources (publications, social networks, etc.) is a necessary prerequisite if we are to expect patients to make informed choices that best meet their situational needs, as well as give patients an understanding of what it means to 'have' a disease (which really means, being possessed or 'had' by the disease in all its social, cultural, as well as physical contingencies).
Conclusions. A disease class is dependent on social beliefs and conditions, individual epistemological stances, and the tools of observation at our disposal. Due to a lack of access to quality information about these realities, patients are disempowered not only from making what may end up being better decisions about their symptoms, but from understanding that a disease is less an 'it' and more an event.


To 'have' a disease seems like it should be a rather simple thing—something that we possess and might be able to get rid of, like a broken car. But most diseases are not this way. The definition of 'what is a disease?' is complex, as is how we ultimately bring together sources of evidence to classify them. What symptoms is a medical professional prioritizing to impact their classification? What assumptions about disease do they hold when diagnosing? Is the disease well-documented and does consensus exist around its definition? Being able to answer these kinds of questions deeply effects people who do not have access to information that tells them of the complexity of their treatment options, expectations, and self-conceptions. In this manner, we also see that definitions are not only descriptive of entities or phenomena, but are also prescriptive of the person diagnosed with a particular affliction. In this way, the definition of a disease as applied to someone, 'has' them. It has them, rather than them having 'it,' in terms of their options for understanding it, treating it, and for being led down treatment paths by doctors, hospitals, insurance companies. Being classed as having a disease for symptom set x means not having another disease for symptom set x. One is, as it were, guilty of having x until proved innocent—and that bar can be quite high, even in the face of the failure of treatment. It also means to belong to communities who have a disease, which could mean to be included or excluded from future treatments or even having insurance (as in the United States). 'Having' a disease is to be diseased within assemblages of social, cultural, as well as physical dispositions and affordances.

Understanding and treating diseases completely relies on information, our ability to access it, and to understand its implications. From the reading of symptoms to the definition of disease; from the consultation of medical literature to the judgments by doctors, insurance companies, and patients; from the social communities that a disease constitutes; to the therapists, consultants, maps, and timing of appointments in contingent networks of specialists that the patient must negotiate; and even in the case of computational models that pit human imagination against the speed and contingencies of cell evolution in diseases like cancer. To ask 'what is a disease' is to ask about information in documentary and computational realms, and the social and technical mechanisms we employ to negotiate these spaces.


In this paper we can only touch upon some of these issues. Our task is to give a broad outline of these issues and to show how people are classified as having diseases, not only by their symptoms, but by the reading and apprehension of those symptoms, and how such readings are inflected and prejudiced by multiple documentary and social contingencies, relying on information access and communities of reading and practice. The categorization or classification of a disease is embodied (Lakoff, 2012) though the complex intersections of personal experience, social processes, and historical modes of interpretation. We will demonstrate this complexity in a case study on diagnosed hip osteoarthritis (OA) which, as an anciently recognized orthopedic problem involving the largest joint of the body, an ordinary person might think would be a rather simple disease to define, to have, and to be treated for, at least as compared to cancer (which is a micro-cellular process). This case study approach is autoethnographic insofar as one of the authors is part of the "community under study," and will represent a moment of "analytic reflexivity" (Crooks, 2013, citing Anderson 2006) toward the goal of understanding the broader implications of this experience for the construction of disease categories in the external world, and the difficulty ordinary patients have in comprehending their symptoms and the possibility of having them treated and maybe cured.

Our case will suggest some of the many contingencies that a patient encounters in their quest to understand their symptoms and their body—as a social as well as a personal entity. In any lingering disease—that is, one that one must seek treatment for over time among multiple professionals, institutions, corporations, and through multiple technologies and techniques (documentary, informational, and otherwise)—what the patient encounters over time is the 'dis-ease' of the contingency of disease as a category and the reality that not only the patient, but the people treating him or her, are defined by social, cultural, technological, and temporal contingencies, traditions, and habits, which themselves define the disease, its treatment, and the roles and responsibilities of everyone, including the patient, who is involved.

We take as a starting point Annemarie Mol's (2002), The Body Multiple: Ontology in Medical Practice, which looks at the disease arteriosclerosis as a kind of boundary entity as expressed in a large research hospital in the Netherlands. In this text, Mol looks at an assemblage of practices and focuses on the ontological formulations that arise from this environment (insofar as we understand ontologies to be the relationships that are created between actors, entities, and processes in this environment—and how problems are framed and shaped here). As Mol (2002, p. 5) describes, "The body, the patient, the disease, the doctor, the technician, the technology: all of these are more than one. More than singular. This begs the question of how they are related." Unlike Mol, our study highlights information access and apprehension as a problem associated with these negotiations. So, rather than ontological in nature, our interest is epistemological and deals instead with the role of knowledge as it relates to the access to and processing of information in order to make certain judgments about how we (patients, doctors) class diseases. And importantly, how difficult it is for patients to go about assessing what is a 'true' diagnosis of their illness and to act accordingly.

Given this focus on individual experience and epistemology as it relates to how information literacy skills and documentation influence our understanding of our symptoms, autoethnography is an appropriate way forward. It provides a keen, phenomenological view, of how one patient experiences disease as a mixture of different modes of expertise, tests, documents, and interpretations. Granted, the use of this method does have its drawbacks—namely problems with generalizability and ethics. In terms of the former, the case is not indicative of a general understanding of disease given that the researcher and research subject are one-and-the-same (Lapadat, 2017), and one experience is not directly applicable or relatable to the general population. The case, rather, contributes to a longer and much broader scholarly conversation about disease and how its classification and instantiation in multiple documentary forms frame our understanding of socially-constructed social concepts and classes. Somewhat related to generalizability are the ethical issues that present themselves in autoethnographic projects. As Judith C. Lapadat (2017, p. 593) has indicated, such a method is fraught with issues "that arise from the enactment of relational ethics; researcher vulnerability … [the] degree of rigor; [and] a risk of leaning toward self-indulgence, superficiality, and sensationalism." Since social spaces are relational—in that our identities are influenced by those we interact with—the process itself portrays others as much as ourselves. To this end, all interactions have been anonymized and the narrative focus has intentionally remained on the individual experience of understanding a disease. Secondly, the author's hope that the theoretical framing provides a rigor that situates this study within applicable scholarly and classification theory discourse. Such findings can be applicable to the design of information systems that are more responsive to individual needs.

As we will discuss, if as a patient, one was expecting a 'straight-forward' statement of disease and its treatment, the reality is that one often encounters a series of changes and nuances of meaning. In some social systems, this experience is even further influenced by capitalist inflections of profit (for insurance companies, drug companies, hospitals, medical professionals) and loss (patients). Having access to medical literature on a disease can often reveal this, whereas not having access compels one to confide in a series of institutions and doctors to make the 'right decisions,' trusting that they (or the patients themselves) have the tools to make the best decisions. In practical terms, it could mean the difference between seeking second opinions, leaving treatment in the hands of professionals, or fleeing professionals in utter skepticism. Becoming informed about what a disease 'is' leaves one in awe of the fragile and contingent nature of truth in medicine, as well as the dubiousness of documentary notions of truth. Access to authoritative, balanced, and situationally relevant knowledge (Wilson, 1973), that leads to an informed sense of the contingency of the category of disease, is a social justice issue that merits more concerted examination.

Where and what is a disease?

Identifying the location and genesis of a disease is often more difficult to assess than one might typically imagine (Bowker and Star, 1999). Before the advent of mechanisms to view the microcellular causes of illness (viruses, bacteria, etc.), dust and household grime was seen as the general source for a variety of ailments; the true nature and source of disease was not yet known (Tomes, 1998). As Jackie Scully notes (2004), illness, disease, and the ways in which we conceptualize their relationship to individuals and community health is contingent on particular historical conditions.

Notions of illness (and how we categorize them) are highly culturally and socially dependent. Studies in medical anthropology and sociology have shown that whether people believe themselves to be ill varies with class, gender, ethnic group and less obvious factors such as proximity to support from family members. Likewise, different cultures document diseases differently, impacting the types of evidence these communities to use to classify them.

What counts as a disease also changes over time (Tennis, 2012), partly as a result of increasing expectations of health and changes in diagnostic ability, but mostly for various social and economic reasons (Scully, p. 652). If one has the economic resources to diagnose a perceived illness, or an insurance plan that allows one to do the same, then one is more likely to be identified as 'having' an affliction, and thus, it can be treated in any number of ways. Assessing where a disease originates or even manifests within a physical body, however, can also be difficult, as pain can be referred, systems or organs fail because of other systems or organs failing, and cancers metastasize.

The problems of what a disease is or where it is located are only compounded in psychological diseases, which are often difficult to diagnose, with generalized signs and symptoms indicative of any number of possible illnesses. Psychological diseases accentuate the social and cultural contingencies involved in disease classification and treatment, since their dispositions and affordances may be spread throughout the 'social body' of an individual.

Whatever the physical causes, psychological diseases deal with social and personal dysfunctions as related to widely variable social and cultural norms. Scully (2004) notes the case of homosexuality's movement from disease to a non-disease during the 20th century. Harré (1984) has described the history of melancholy, a now extinct mood and psychological disease. And there have been cases of other ailments such as hysteria (Tasca, 2012) and Attention Deficit Hyperactivity Disorder (ADHD) (Scully, 2004), whose status as diseases has been contested. Some psychological diseases remain diseases but change their type or specificity: for example panic disorder appeared in DSM III in 1980, emerging in 1964 out of a more general class of anxiety disorders that used imipramine to treat anxious patients (Nardi A.E., 2016). Melissa Adler (2017) shows how perversity, often seen as a symptom of other, often sexual, disorders has evolved over the years in documentary and library systems. Additionally, Baca-Garcia et al., in a study of 10,025 adult psychiatric patients in a Spanish hospital, found a wide variety of psychiatric diagnoses for the same patients, using ICD-10 categories, with the consistency of diagnostics ranging from 29% to 70% (Baca-Garcia, 2007). The conclusion in their study is concise: "The findings are an indictment of psychiatric diagnostic practice" (p. 210).

We would suggest that the inconsistency of psychological diagnoses is a result of not only clinical practice (Baca-Garcia, 2007), but also because psychological disease is a greater social and cultural object than physical disease. Baca-Garcia et al. (2007) saw greater consistency among those diagnosed as schizophrenics, as compared to mood disorders, and this may reflect a greater physiological disposition at play. As largely socio-cultural objects, mood disorders would be difficult to diagnose because diagnosticians would introduce broader cultural and social judgments into the diagnoses, with the patient perhaps exhibiting broader ranges of symptoms in different social and cultural settings. The case is similar in all social science research where the nominal nature of the entity being studied leads to a great deal of 'theory building' in order to explain the phenomena. In brief, the 'theories,' or in this case, the ontologies, are simply reflecting the different perspectives—or epistemological approaches (Hjørland, 1998)—being brought to a social and cultural phenomenon.

It is presumed, however, that many, if not most, physical diseases have a stronger physiological cause or set of causes, which constricts the interpretability of their expressions or 'symptoms' and treatments. (For example, there can be many interpretations of whether and why a person is crazy, but a broken arm should display a fractured radius, ulna, or humerus.) Indeed, what distinguishes a mental from a physical disease is the suspicion that the cause of the disease lie in the social and cultural being of a person, not simply in their physical being. The classification of mental versus physical disease is relative rather than absolute, however, based on suspected stronger dispositions or affordances in social and cultural, rather than physical origins. And sometimes there are disease categories that are hard to divide as being mentally or physically caused. Sick building syndrome, arising in the 1980s, is a case in point. As Michelle Murphy (2006) describes, sick building syndrome was a condition marked by nonspecific symptoms that resulted from the increase of confined office buildings for a largely white-collar workforce. This ailment was diagnosable as both a problem of the physical body, causing headaches and respiratory issues, as well as psychological ones, where women, especially, were diagnosed with ''dysmenorrhea,'' ''hysteria,'' or ''psychosomatism" (2006, p. 70).

Even if we limit ourselves to physical diseases, though, it can be hard to locate the physical site for a disease. Traditionally, disease was diagnosed at the site of symptoms. Breast cancer, for example, within a morphological model, is the presence of cancerous cells in the breast that lead to the visible tumor. Only more recently, with a biological understanding of the disease process, has the morphological model of causation been challenged. For example, solid tumor cancers are being understood by some to be systematic, rather than tissue specific (Garber, 2017). And in 2011, a U.S. National Research Council on A Framework for Developing a New Taxonomy of Disease proposed a new taxonomy for disease based on molecular biology, rather than on signs and symptoms (National Research Council, 2011). Even the presence of molecular signs for cancer may not strongly correlate with disease symptoms. Changes in the treatment of prostate cancer, ductal carcinoma in situ, and many other diseases where cancer is present at a molecular level, but may not appear in the daily life of a person, challenge the very notion of disease and treatment. Indeed, at the molecular level, it is unclear what leads to cancer: unruly cells? Is cancer a process? A state? Is it a problem of the balance of health or disease in an organism? Does it come from the 'inside' or 'outside' a body?

The case: 'My hip'

We title this case study 'my hip' for it resembles an event. Conversely, we will use the narrative device of 'the patient' so as to put distance between these events, one that is appropriate for the clinical setting. But they are personal events, as we shall see, that need to be seen 'objectively,' or at a distance, so that the reader and author can appreciate them as events, and not just experiences. What justifies these as events and not just experiences are the everyday technologies, techniques, professionals, and institutions that come to define symptoms of pain and dysfunction as disease; in this case, hip osteoarthritis (OA). What justifies a first-person account rather than an observed study is that it can draw out the phenomenological nuances of the events, not only as events, but as experiences too, as is often the case in autoethnographic studies. Both the event and the experiences of those events are important components in not only defining a disease, but undergoing one as both a patient and a medical practitioner.

'The patient' is a 58-year-old man with a history of running for approximately 31 years, during adolescence and then from 32 years of age to the present. Approximately five years ago, during a run, the patient experienced a sharp pain in the left buttocks that caused him to limp home. Symptoms such as a pinching in the groin and anterior hip pain began, changing over the years to pain around the entire hip, and at present, in the medial gluteus and maximus gluteus region, along with lower back pain and Iliotibial band.

The patient began to address these issues with a visit to a physiatrist—a doctor who specializes in muscular and neurological disorders—who eventually ordered an MRI which showed moderate hip osteoarthritis and a labrum tear in the left hip. Physical therapy was recommended, with only minor resolutions of symptoms. A few months later, the patient then sought out a local orthopedic surgeon, specializing in hips. After examination and x-rays, the doctor informed the patient that if he continued running he would need a hip replacement in five years. The patient has continued running ever since.

The patient's next orthopedic visit a few months later was with a doctor who specializes in a newer disease category called "femoral acetabular impingement" (FAI). "Femoral acetabular impingement"is thought to occur by an 'over-coverage' of the acetabulum over the femur or by bone growths ('bone spurs' or osteophytes) around the femoral head. It often occurs with labrum tears (labrums are the ring of cartilage of the outside socket of the hip joints). The theory is that extra bone growth leads to an ill-fitting ball and socket joint, and the extra bone growth then wears into the labrum and eventually the articular cartilage, thus causing osteoarthritis. If conservative treatment, consisting of anti-inflammatories, physical therapy, and possibly cortisone injections into the joint, don't help, then surgery can be recommended, unless there is already hip osteoarthritis present. Surgery consists of shaving the bone and repairing the labral tear.

The "femoral acetabular impingement" doctor, noting that the MRI showed that the osteoarthritis was present, referred the patient to physical therapy. Refuting the words of the early orthopedic surgeon, he told the patient that saying that someone had x number of years before needing a hip replacement was ridiculous, and anyway, it was difficult to have runners stop running, so the patient could do as he wanted. The patient thus continued to run. The physical therapy helped to some extent, but the effectiveness gradually ceased.

Frustrated with traditional medical advice and seeking 'an answer,' the patient went to a specialist in 'active release therapy' (ART) at a private clinic. ART is a type of massage therapy based on the notion of 'releasing' tense soft tissue. The 'active release therapy' therapist was skeptical that hip osteoarthritis was the cause of the patient's symptoms, and treated him with a series of forced stretches and strengthening of the buttocks and gluteus medius. (It should be noted that the past few years have seen many running injuries attributed to 'dead butt' syndrome in distance runners—the theory being that they need a steady diet of medius and maximus gluteus strengthening.) The patient continued with the 'active release therapy' therapist for about 14 sessions, until finding out that insurance stopped covering the therapy. The exercises learned seemed to help with the running pain, but also appeared to coincide or cause iliotibial band (ITB) syndrome pain in the area around the gluteus medius.

The next specialist, whom we will call 'Dr. X,' a well-respected orthopedic surgeon, was sought approximately one year after the onset of symptoms. The doctor took x-rays and after reading the x-rays told the patient that he had moderate hip osteoarthritis in one leg and mild in the other. He also suggested that the patient run less. The patient decided that since this doctor did not rule out running, and he seemed the most reasonable in his approach, that this doctor was correct. The doctor also referred the patient to a back doctor, since it is often hard to tell if the back is the origin of hip pain. The back doctor ordered a spinal MRI and could not find anything extraordinary that might cause the hip pain, so he referred the patient to a neurologist who did a brain MRI with similar inconclusive results. Since the hip pain was now a source of limping, however, the patient continued with another physical therapist, who was doubtful if the hip was the source of the problem. The patient was with this physical therapist nearly a year. The PT seemed to help the patient continue to run, but the patient continued to limp while walking.

The patient returned to 'Dr. X' two years after his first visit to him for a follow up. Dr. X took x-rays like the last time and told the patient that the osteoarthritis had slightly progressed but that he was far from needing a hip replacement. Dr. X suggested the patient take anti-inflammatories if he really wanted to do something, but otherwise refrain from doing things that hurt (like externally rotating the leg).

Suspecting a problem with his SI joints rather than the hip, the patient then found another physiatrist, who asked for another MRI, this time to include the SI joint. Given the earlier diagnosis of hip osteoarthritis, the insurance company refused to provide one for the SI joints, but agreed to another hip MRI. This MRI showed, according to the doctor who read it, now severe inflammatory deterioration.

The patient then found yet another new orthopedist, a renowned hip doctor who claimed on his webpage to be a runner. Visiting him for a second opinion, the Dr. told the patient that he, the doctor, could no longer run because he had run a lot and now had hip osteoarthritis. The Dr. told the patient that when he had the patient's level of hip osteoarthritis as shown in the last x-rays, he was running "a ton of miles", and so whatever the patient's pain was from, it was not from hip arthritis.

Last, the patient saw Dr. X again, four years since the first visit. The Dr. told the patient that his x-rays looked the same as the first time he took them, and that it was not degenerative hip arthritis. Content with having the 'answer' of non-arthritis, and having now racked up in excess of $20,000 in insurance and out of pocket medical costs seeking an answer and cure, the patient continues to run and limp as before, but is now seeing a renown local massage therapist for excruciatingly painful 'deep massages' in order to break up 'scar tissue.'

Tools, documentation, and diagnosis

The tools, and the resultant documentation they produce, play a large role in the classification of disease and a patient's subsequent treatment. X-rays, for example, are understood as the 'gold standard' for osteoarthritis hip diagnoses, despite MRIs being used and more effective in diagnosis. MRIs are able to show soft tissue damage as well as bone damage. It is notable that in the above case both were used to diagnose the hip osteoarthritis. X-rays show bones and space between the bones. Cartlidge loss may be evident in areas not shown by the x-rays since the images just show a two-dimensional image of a three-dimensional space. MRIs may show particular spots of acetabular or femur damage as well as tissue damage, making them far more details and useful for diagnosis. Nevertheless, because of cost, the wide use of x-rays in diagnosis of hip osteoarthritis, and other supportive norms (such as the U.S. Food and Drug administration establishing the criteria for disease modifying osteoarthritis drugs as the slowing of radiographically demonstrated joint narrowing), x-rays remain the gold standard for diagnosing osteoarthritis (Hayashi, 2016) (Weber, 2013). In other words, the level of access to medical insurance, as well as to doctors that can utilize both modes of evidence, influences a person's disease class and treatment. To complicate the issue further, however, there is a low correlation of x-rays and arthritic pain in the hip. In one notable study (Kim Chan, 2015), 15.6 % of hips in patients with frequent hip pain showed radiographic evidence of hip osteoarthritis, and 20.7% of hips with radiographic hip osteoarthritis were frequently painful, leading the authors to conclude, "Hip pain is discordant with radiographic hip osteoarthritis". In sum, the 'gold standard' for diagnosing hip osteoarthritis has been shown to be a very poor diagnostic tool, despite it being widely used and supported.

"Femoral acetabular impingement" is not an uncontroversial diagnosis, either. It is unclear if "femoral acetabular impingement" symptoms are causes or results of bone arthritis, and if "femoral acetabular impingement" causes labral tears and always need to be repaired, among many other issues (Rubin, 2013). Others have pointed to discrepancies of global management of "femoral acetabular impingement", even asking if it is a "disease of affluence" (Yeung, 2014), because of its prevalence in the United States and in Western Europe.


What can we conclude from the narrative, medical reports, and associated documentation? Perhaps not that medical practice is fraudulent or that the doctors consulted in the above narratives didn't give their best professional knowledge. Nor that they were wrong. We shouldn't do this not only because the doctors are trained and certified professionals and because we might respect their professions, research, and institutions of knowledge. But, because to do so would be to say that there was a 'right' understanding of the symptoms that occluded dissensus and even the patient's own progression. To say that there was a right understanding would further suggest that research comes to a standstill, not only in terms of research papers, but also professional training. It would suggest that the diagnosis—of osteoarthritis, for example—was a statement of an absolute fact without contestation. Such a 'fact' would be a complete description—a representation of the disease that was the uncontested truth. Secondly, how professionals class diseases depend upon different modes of evidence and documentation, mediating tools, as well as how the triangulation of these resources is interpreted.

While research papers often display their arguments as if they were stating such a fact, this documentation perspective is misleading. As Bruno Latour has argued (B. Latour, 1987; B. Latour, 1996), a research article and other 'bibliographic' documentation is just one moment of a stream of information that passes from the study of empirical materials to their bibliographic 'truth' and back again, a cycle of contingent actors—human, empirical, institutional, technological, and rhetorical—that make something true. Medicine in practice and research involves technologies and actors that take part in what Christa Teston in her admirable book on cancer research calls "evidencing" (Teston, 2017). Evidencing is a manner of bringing something into appearance through social, cultural, and physical affordances, which include institutions, people, technologies, rhetorical techniques, and the materials under observation. In the case of disease, 'behind' any research article there are all these 'affordances' that are brought together at different points in an information flow. An x-ray, for example, produces a different set of classes than an MRI, which produces classifications that may align with or contradict the evidence and classes of other techniques. As more techniques and technologies are deployed in the future, more classes might present themselves that define what it means to have this particular kind of 'hip pain.' There are also multiple sciences, practices, ontologies, technologies, and institutions that contribute to the meaning of a disease. As Teston also argues (2017), what is often missing in such evidencing is the experience of the patient, which at least in the case we discussed above, can individually or through further studies question findings and alter the research or practice of disease.

Another important item to note in our analysis was that 'the patient' in the narrative had a high-quality university library at hand, so the physicians' advice could be balanced with research into the medical literature. Access to this material has proven invaluable to the patient and has contributed to an ability to advocate for himself, as well as helping balance the perspectives of the different medical professionals and the patient's own experience. Having access to institutional knowledge leads a patient to a very different understanding of disease: it is seen less as a series of symptoms matching a known cause and more as a set of contingent agreements between agents in the production of knowledge and practices based on them. Beyond merely having access to information, 'the patient' was privileged enough to be able to make use of said information by consulting with cognitive authorities (Wilson, 1983) to best assess the next reasonable steps for medical treatment—even if the ultimate diagnosis was not final. Disease, like medicine and science, is not a thing, but a process, and a very human one at that. As the narrative above emphasizes, however, contextualizing the veracity of information within many—often conflicting—medical opinions and scholarly literature requires access to both information sources and a mechanism to contextualize that knowledge within specific medical processes.

On the one hand, we have what is thought of as true about a disease and its treatment (definitions, methods of diagnoses, etc.). On the other, is the knowledge that this is brought about not just by documents, but by rhetorical methods, compromises between people, empirical data, institutional contexts, the need of hospitals and insurance companies to make profits, different types of imaging technologies, and many other factors. It is through the intersections of these many contingent and historically situated systems that a medical opinion is conveyed, a disease is classified and established, and treatments are made. Each patient confronts a new set of circumstances that are dependent, not only on the experience and empathy of their medical practitioner, but also on the kinds of information available to make decisions on the best course of action.

Lastly, this study can inform the ways in which we design, critique, and evaluate classification systems. In line with many studies that posit the value of plurality in classification and knowledge organizing systems (Mai, 2011; Olson, 2002), the better we understand how people interpret social classes can help us best situate systems to meet their situational needs at the point of access.


At the outset of their disease, a patient is often unable to see these professional assemblages for their intricacies and contingencies. They are unable to see 'medicine' or 'science' as a series of contingencies that may be, and can only be, 'true enough.' The authority of medical institutions and the expertise of practitioners often obfuscate the complexity of diagnosis. How a disease class is defined is dependent on social beliefs and conditions, individual epistemological stances, the tools of observation at our disposal (either due to current technological advancements or economic availability), and the technologies and processes that analyze our personal data. Due to a lack of access to quality information about these realities, patients are disempowered not only from making what may end up being better decisions about their symptoms, but from understanding that a disease is less an 'it' and more an event. The very notion of a disease is located in contingent and fragile systems of relative 'truths.' This alone can be painfully frustrating, given the pressing demands of pain and illness upon a patient, much less in some cases impending death. One is often beaten down into being the patient with patience while in the hands of modern institutional knowledge production, where the illusion of scientific truth and also the purported power of patient's knowledge and choice is replaced by the reality of contingent and momentary knowing.

Like so many other experiences in modern life, the individual's choice is between relying upon institutionally produced knowledge and, conversely, relying upon our own experiential prejudices and those of other non-professionals. Most of us choose the halfway point between these that seems reasonable for us, but this judgement itself is only reasonable if we see the gaps and the joints that hold systems of truth together. It's not that institutions and professionals are 'wrong,' but rather, they may not be right, and the same is true of our own judgments.

About the authors

Ronald E. Day is a Professor in the Department of Information and Library Science and the chair of the Department of Information and Library Science, University of Indiana, Bloomington, US. His research is in the philosophy, history, politics, and culture of information, documentation, knowledge, and communication in the 20th and into the 21st centuries in the U.S. and Western Europe and in the discipline of Library and Information Science. He can be contacted at roday@indiana.edu.
Robert D. Montoya is an Assistant Professor of Information and Library Science and Ph.D. Program Director for Information Science in the School of Informatics, Computing, and Engineering (SICE), Indiana University. He is also Director of the Comparative Classification Lab. His research broadly examines how communities represent, organize, and share information and how the knowledge organizing infrastructures that support this exchange are affected by underlying values about knowledge. He can be contacted at montoya@indiana.edu.


How to cite this paper

Day, R.E. & Montoya, R.D. (2019). 'What is (a) disease?' Disease as events and access to information. In Proceedings of CoLIS, the Tenth International Conference on Conceptions of Library and Information Science, Ljubljana, Slovenia, June 16-19, 2019. Information Research, 24(4), paper colis1920. Retrieved from http://InformationR.net/ir/24-4/colis/colis1920.html (Archived by the Internet Archive at https://web.archive.org/web/20191217173816/http://informationr.net/ir/24-4/colis/colis1920.html)

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