The Power of the Patient Perspective
“‘I [Narrator] would never have a procedure done here: I’ve seen too much. To them, if you’re black and poor, you’re nothing but a guinea pig.’ I realized that my discomfort with her words went beyond the truth or falsity of her allegations: The mere fact that she believed them was unsettling, because she had worked in a hospital setting, was presumably better informed than most, yet she did not trust the medical system and seemed less likely to turn to it when ill. The perception of evil in such cases, I realized, can prove as damaging as the malfeasance itself.” Harriet A. Washington from her book Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present.
The above quote illustrates perceptions held by a woman of color about a particular hospital, and the healthcare system as a whole. Specifically, an African American woman believes that hospital staff treat African Americans, especially those who are low-income, in an unethical and careless manner. The reader may consider that, to the Narrator, the perceived origin of unequal treatment lies within providers’ disparate thoughts about African Americans. Nevertheless, the beliefs of the Narrator are also dangerous to both patient and provider, as well as to the healthcare system.
As a trained social psychologist and mixed-methodologist, it is my passionate duty to recognize and understand the power of human perception and related behaviors. Also, as a healthcare researcher, I recognize that healthcare represents a realm in which there is a dire need to understand human perception – the patient perspective, if you will. Take for example, the continuing challenge that frequent, non-urgent emergency department use poses to the current healthcare system in terms of costs, provider and hospital resources, and patient wellness. Despite a disproportionately high number of Medicaid patients frequently visiting emergency departments for non-urgent purposes, researchers and providers have largely approached the issue from the provider perspective using quantitative data sources. However, a burgeoning body of literature featuring qualitative methodologies offers a more complete view of the issue, by exclusively focusing on the narrative provided by Medicaid patients (Glover & Purim-Shem-Tov, in press).1 Here, providers and researchers may develop and modify interventions addressing and decreasing non-urgent emergency department use by Medicaid patients.
Now, let’s step back and take a broader view of healthcare. Issues plaguing healthcare. Issues plaguing healthcare – including cultural mistrust and cultural competence, rising healthcare costs, access to healthcare, and a limited number of providers – are widespread across disciplines, specialties, and locations. Both patients and providers contribute to the existing issues within healthcare. One goal of a provider is to supply the best care possible to each patient in a culturally competent manner. However, the need for healthcare originates with patients, with their ultimate goal consisting of activation and engagement. I posit that the patient portion – activation and engagement – is the more arduous task when compared to provider goals.
Consider that patient activation and engagement require consistent effort and the undoing of potentially harmful beliefs of the medical system and its providers. Without a patient deciding to seek healthcare for an issue, and being able to act upon their decision (i.e., patient activation), subsequent steps made by both patients and providers are rendered useless. Once activated, the patient must remain engaged throughout the lifelong process of health and healthcare. Ultimately, patients bring their perspectives including social cognitive processes and heuristics to the healthcare system and, in part, have the power to influence the remainder of the healthcare process.
In order to achieve health equity, at the basic level, a patient should not represent a monolithic group upon which providers act. Nor should a patient simply represent a particular group based on race, ethnicity, gender, insurance status, etc. Patients identify with and represent many groups; however, a disconnect often exists between how a provider perceives a patient and the way a patient identifies himself/herself. When patients are able to express their perspectives, they may indicate complex self-identification or identity intersectionality. Here, these complex identities inform their healthcare beliefs and choices.
By understanding and, subsequently, addressing the patient perspective and related healthcare experiences, providers may become culturally competent and advance methods of delivering effective healthcare. Perceptions – patient perspectives about healthcare included – are slow to change, and resulting behaviors often are inconsistent or short-lived. Hence, cultural competency must be an ongoing process, with providers continuously challenging their notions about their patients. Providers must also be willing to provide care for the bespoke needs of vulnerable, disenfranchised groups of patients. For the effectiveness of healthcare to take root, patients’ perceptions of the healthcare system, and the intentions of their providers, must be built upon a patient-provider partnership, patients’ trust of their providers, and continuous informed interactions.
1 Glover, Crystal M. and Purim-Shem-Tov, Yanina A. (in press). Emergency Department Utilization: A Qualitative Analysis of Illinois Medical Home Network Patients. Journal of Health Disparities Research and Practice.
Crystal M. Glover, PhD, is an Assistant Professor and BMO Harris Bank Health Disparities Research Fellow in the Department of Preventive Medicine, Rush University Medical Center.