How Risk Ideology Creates Patient Work in a Secondary Stroke Prevention Clinic: Findings From an Institutional Ethnography in Canada
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Session presented on Thursday, July 24, 2014: Purpose: Patients at risk for stroke seem to have certain features of clinical importance which have been associated with social determinants of health. Patients also seemed to be engaging with many activities and life changes in order to reduce their risk of stroke. This project had two aims: to understand the role of social determinates of health in health care, and to explore patient work in managing their stroke risk. The purpose of this paper is to describe findings from a nursing doctoral dissertation which explored the social organization of secondary stroke prevention from the standpoint of the patient. Methods: The setting for this investigation was a Secondary Stroke Prevention Clinic (SSPC) which is situated within a large academic hospital in downtown Toronto. This particular site was selected because it is well known as a center of neuroscience expertise in Toronto, as well as a center known to serve a diverse population. The staff in the clinic included two attending neurologists, a Fellow in neurology, an Advance Practice Nurse (APN), a research nurse, and the on-call physiotherapist, an administrative receptionist. Institutional ethnography (IE) was used as the method of inquiry. IE requires two levels of data. In this exploration, level one and level two data, as well as the connecting texts were collected. The first level of data is about the local setting, the individuals that interact there and the accounts of their experiences. These data were collected through observation, textual analysis, and interviews. In this exploration, this included making visible the work of patients, understanding the work of the health professionals in the clinic, attending to and capturing links to the extra-local and noticing and acquiring texts that enter or exit the local setting. This included actively listening for ways the local setting was organized externally by noting the texts, names of external clinics, companies or organizations. Activities of both the patient and the health professional and the non-verbal behaviors of all parties were attended to. Interviews were conducted with recruited people who came to see the neurologist and their family members, spouses, or significant others. The setting and timing of these interviews flexed with the rhythm of the clinic. These interviews were audiotaped with consent and transcribed. Interviews were also conducted with the nurse and the doctors involved directly in the clinic appointments. Sometimes these were formal interviews; sometimes these were quick clarifying questions between patients or after clinic hours. Formal interviews were audiotaped and transcribed. Texts that entered, were part of, or exited the clinic area were gathered for analysis. Research Ethics Board approval was received from the hospital site. Results: Regarding the role of social determinants of health: findings were drawn from the social organization of knowledge that became apparent: the privileged knowledge is biomedical; social knowledge was not included in the clinic, or in the system. Specifics: Using imperial and colonial language embedded with risk, a speech delivered at an elite club pitched a new model of health care called the Ontario Stroke Strategy. Formulated around the changing paradigm of stroke, an interventionist one: the use of a medication administered to patients during the acute event of stroke and stroke prevention mechanisms, the design of the model that was promoted, marketed and approved was a model that spanned the continuum of care. One element of this continuum included Secondary Stroke Prevention clinics, the setting of this study. These clinics represented a new medical specialization. The definition of stroke prevention and the use of the modified Rankin Scale on the stroke data sheet highlight the purpose of the clinic the prevention of disability, defined as an economic burden. The Empire Club speech argued that stroke is an expensive social burden and that reducing damage from stroke would result in economic savings. Biomedical knowledge was privileged and promoted by the Ontario Government, pharmaceutical companies and the Heart and Stroke Foundation as they linked arms and successfully gained Ontario Provincial funding investment in reorganizing stroke care around an interventionist, high risk pharmaceutical agent, continuing the investment in acute care and industry interests. 2) Regarding patient work: The concept of 'secondary' prevention became visible as different than primary prevention. The role of this secondary stroke prevention clinic is to provide precise targeted investigations and interventions to very high risk patients after they have presented to a health care referral source with symptoms of stroke or a completed prior stroke. All patients or their families in this study identified a symptom that brought them to a health care provider. Three of eight patients related their symptom to possible stroke, and specifically sought care for this. Their work of self-detection of symptoms was promoted through social marketing strategies including a Heart and Stroke refrigerator magnet and television commercials. Symptoms activated the medical team to search for disease, both as a source of stroke and for risk factors. This search was conducted using imaging of the brain and blood vessels, blood work, and heart rhythm tests. Pre-scripted assessments suppressed patient experience, transforming it into stroke risk relevance. Subjective data entered into the clinic, was gleaned as a vehicle to mining the patient for objective data. This objective data would then inform the possible treatments, based on the statistical formulas such as 'number needed to treat.' Patient work was substantial and included providing a narrative medical history, attempting to answer technical questions, attempting to have questions answered, listening to follow-up verbal instruction, attending to follow-up investigations, taking medications, processing brain images, comprehending the numbers of blood pressure and blood results, participating in assessments, examination and scales, going for blood work, and participating in challenging discussion about the greatest risk. Conclusion: The tools of institutional ethnography were used to explicate the social organization of secondary stroke prevention. The standpoint used was that of the patient. Locally, patients work and experience are organized by the texts that enter and exit the clinic; the extra-local connections to these texts inform the work process and activities of connected sites. The referral form linked to referral sources such as the family physician, the involved doctors' act of information sharing and the clinic work of managing urgency and risk. The triage form revealed the urgency and risk imperative. The letter of appointment revealed the patients work of participating in the clinic appointment as personal knowledge broker in bringing medications and scans, and revealed these two components as valuable. The stroke data collection sheet linked to the Institute for Clinical and Evaluative Studies, a government evaluation arm, and the expected performance of the clinic. The symptom magnet linked to the Heart and Stroke Foundation, their work of social marketing, and patient work of symptom identification. Textual analysis of these documents makes visible the biomedical ideology of risk that supported prevention as a biomedical specialty. The major techniques and patient work arising from the stroke prevention clinic involves the use of technology to determine disease and risk factors within the body, and subsequent attempts to modify those risk factors through primarily pharmaceutical means. Factors known as socially determined consequences of health sociologically are known only as biomedical risk factors in the clinic, by the patients and in the greater extra local community. The ideology of risk seems to hold the clinic hostage and in the drive to identify and document risk factors, the work of patients is not visible, not able to be raised by patients, and in fact taken for granted. As a society we have had our consciousness subjugated to the ideology of risk. The ideology of risk which provides the machinations of health service delivery in the secondary stroke prevention clinic obscures the complexity of patients individually, biomedically, socially and morally. On an individual patient level, people came to the clinic with multiple coexistent conditions. The secondary stroke prevention clinic provided a narrow slice of expertise into the vast personal complexity. Biomedical complexity was obscured by the singular focus of vascular disease on one organ of the body. Risk factors named as stroke risk factors - high blood pressure, diabetes, smoking, dyslipidemia - are also contributors to heart disease and vascular dementia. A clinic so micro-specialized that it focuses on one organ of the body that is impacted by vascular disease, without a larger picture of the impact of vascular disease on the body as a whole contributes to the creation of multiple appointments for patients. Social complexity brings into view the social determinants of health. The same risk factors in the field of stroke are the same factors considered consequences of poverty, low education, environment, social exclusion. These social risks were not considered. The schema of the Ontario Stroke System has been directed towards the individual body and that individual's behavior. Socioeconomic status is listed as a risk factor, but a non-modifiable one. Moral complexity is obscured when population statistical data is used to develop an individual treatment plan, especially when the rationale for the treatment plan is made apparent to the patient as was the case in this study.