The Social Construction of Medical Knowledge and Health Behavior : using topic modeling on abstracts of breast cancer research and posts from online breast cancer patient forums
Author: Jo, Wonkwang (Lecturer, Seoul National University/ Ph.D. Sociology)
** This is a brief summary of his Ph. D. Dissertation
This paper seeks to study the process of the social construction of medical knowledge and its effect on health behavior. Medical knowledge is an important structural variable which directs peoples’ attention and judgements in specific ways and which has implications for the networks between individuals. This research proposes that a better understanding of the construct of medical knowledge could complement previous research, which has generally focused on individual and inter-personal variables. This research analyzes the formation and effects of breast cancer knowledge.
Breast cancer is a suitable disease for analyzing the social formation and effect of medical knowledge for three reasons; first, people have a high degree of interest in information regarding cancer. Second, breast cancer has the highest incidence rate of all the types of cancer and receives a lot of national attention. Third, the effects of breast cancer knowledge are broad and long-lasting due to the generally long duration of the disease.
To analyze breast cancer knowledge, this research collected 48,448 abstracts related to breast cancer research from 1975 to 2016 and approximately 140,000 posts on the website community.breastcancer.org, which is a well-known breast cancer support forum. The former is utilized for analyzing formal knowledge about breast cancer and the latter for analyzing informal knowledge.
This research applies topic modeling as the primary methodology because it is a useful method for measuring the knowledge that exists underneath a large collection of documents. Nonetheless, topic modeling has its drawbacks, so this research also employs word network analysis and lasso regression analyses to make ameliorate the limitations of topic modeling.
This research uncovered two main findings; first, medical knowledge is socially constructed, at least in part. Not just the discourse surrounding illnesses—that is, the subjective experience of patients—but the discourse of diseases—that is, the biological changes which occur on or in the body through specific pathological ways—is also socially constructed. This dissertation discovered that the object of in research changes depending on the interests of the group funding the research. If research receives funding from governmental agencies, the focus of the research is more likely to be microscopic objects, like cancer cells and genes, which I refer to as “molecular objects,” or macroscopic objects, such as race or other specified groups of patients. In contrast, if research receives funding from a private organization, the focus of the research is more likely to be breast cancer patients.
This phenomenon is due to the different interests of government and private organizations. Governments have interest in managing the health of the populace and controlling medical expenses, which are important means of increasing the national budget and making the country more powerful. Paying attention to various patient groups instead of individual patients is related to this tendency. Devoting attention to “molecular objects” is to 1) produce knowledge which can be applied to the population instead of specific patients and to 2) screen the population to identify at-risk groups and concentrate medical resources to those groups. By contrast, private organizations, including pharmaceutical companies and patient groups, have an interest in improving outcomes of cancer treatments in individual patients, because such improvements can lead to economic benefits or the fulfillment of humanitarian goals.
Second, if medical knowledge concentrates excessively on the biological aspects of a disease, complaints and demands derived from the concrete, lived experiences of the disease sufferers tend to become suppressed. This research identifies a phenomenon in whereby the various forms of informal knowledge influence individual decisions regarding breast reconstruction. On the online breast cancer forum, users who are amenable to breast reconstruction are exposed to informal knowledge which has various focuses including social relationships, experiences with cancer, and government policies. This knowledge is likely generated via user communication with others about their experiences. In comparison, users who are not amenable to breast reconstruction are exposed to informal knowledge which concentrates on the biological aspects of breast cancer. These users tend to use the online patient forum to acquire professional information and form limited relationships with other users.
Why does informal knowledge with a variety of focuses induce a positive attitude toward a breast reconstruction and informal knowledge with a focus on biological aspects induce a negative attitude? Breast reconstruction is not for biological survival, but rather, it is for the social and psychological benefits. Informal knowledge which concentrates on biological aspects turns people’s attention away from the non-biological aspects of a breast cancer. In contrast, informal knowledge which has a variety of focuses highlights the non-biological aspects. It is natural that the latter facilitates the decision to receive breast reconstruction, which is an active measure taken to cope with non-biological discomfort. Although these results are derived from an analysis limited to breast reconstruction, they have important implications considering that most formal medical knowledge concentrates on the biological aspects of diseases.
This research demonstrates that medical knowledge is related to social power. The interests of various social groups intervene in the formation of medical knowledge, which is generally viewed as something which is the result of objective research. Occasionally, competition among various social can be observed. Also, medical knowledge directs people’s attention and judgement, and aligns the networks formed between individuals into specific configurations. This is not a traditional phenomenon of power but it nonetheless has an important effect on power, and it can be thought of as a micro power.
The strategy of this research can be applied to other diseases, including infectious diseases. The methodology used in this research to approach knowledge structures by analyzing natural language can be a useful reference for other research efforts utilizing the natural occurrence of language, which is growing rapidly lately.