Picture in your mind’s eye a typical doctor’s office. What do you envision? Often, when we visualize the beginning of an appointment, the image begins with a doctor opening the door and greeting a patient. However, the moment of entry for the doctor- for the current outpatient appointment- is some 20-30 minutes after the moment of entry for the patient. Before the physician enters the room, the patient has interacted with the personnel at the front desk, the Nurses and/or Physician’s Assistants, who, depending on the nature of the visit, may take their blood pressure, weigh them, and update their medical history before requesting that they disrobe or place themselves in a position of vulnerability and waiting. In other words, for many medical practitioners, the ‘encounter’ with a patient begins well after the appointment is initiated.
In this snapshot, ‘access’ can be defined as both an outcome (realized demand, or service use) and a process (from help-seeking to service use). The latter- access as a process- draws upon Penchansky and Thomas’s (1981) 5 A’s of Access:
- costs of care, including financial, temporal, foregone earned income or work hours, and travel time
- supply of providers across the continuum of care, from primary to specialist care
- this concept can be extended to include plasticity, or the ways that the scope of healthcare service provision can and does shift depending on the composition or mix of physicians (generalists and specialists) in a given service area (Holmes, Morrison, Pathman, & Fraher, 2013)
- the degree of (mis)match between need and service provision
- degree of mismatch or friction between patient resources and needs and health system service provision, such as appointment times
- the degree to which services are appropriate
Taken together, these 5 A’s enable us to conceptualize access as process in space (some service areas have more resources than others) and time (wait times for appointments; travel distances and times for care) that interacts with patient and health system characteristics, including severity of health states, healthcare policies delineating the financing of healthcare services, respectively. Here, accessibility includes and exceeds physical access to sites of healthcare provision, as required by the Americans with Disabilities Act, and Section 504 of the Rehabilitation Act of 1973.
For a disabled patient, this ‘encounter’ may be the culmination of months of work. This may be their 6-month follow-up with their primary care provider, or ‘usual source of care’, necessary for continued access to life-improving or life-saving medications or treatment. This moment follows a wait for an appointment that fits within the constraints and affordances of their lives- the resources at their disposal, and their limited availability (i.e. access to transit, or a family member who can drive them to appointments). Before they enter the waiting room, they face hurdles in the process of help-seeking- from wait times for primary care and subsequent specialist appointments to their insurer’s prior authorization process that determines whether this particular ‘encounter’ will be more or less affordable.
Arguably, for both practitioners and patients, their experience of time is ‘chopped up.’ In 20-30 minute increments, life is contoured by systems that encompass large swaths of their lives and livelihoods. For disabled patients, these appointments may be essential for the maintenance of their quality of life. The physician on the other side of the desk or examining table is a key gatekeeper embedded in the larger apparatus of the medicalized welfare state, which relies more and more on medical expertise to delineate who ‘deserves’ social investments and care and who does not. After the Personal Responsibility and Work Opportunity Reconciliation Act of 1996 (also known as PWRORA) imposed tighter time constraints on Temporary Assistance for Needy Families (TANF) and Supplemental Nutrition Assistance Program (SNAP) eligibility, Social Security Insurance (SSI) became a more important source of income for disabled people in the U.S.- a pattern that is especially concentrated in the U.S. South, where the share of disabled population is highest (Wong, 2016). This means that disabled patients’ time may be divided up in the temporal increments of the friction-laden administrative processes, with average waiting times for approval totaling 18 months in 2019. Meanwhile, for the practitioner, this appointment is one of many on a demanding schedule with a growing share of administrative work.
For physicians, these routine appointments are all too brief, posing a constraint on the therapeutic relationship they could establish and maintain with each patient. An added constraint is the increased need for medical interpreters for disabled patients whose communication modalities are discordant with their own, within a broader context where nearly one-third of hospitals in the U.S. do not comply with the requirement to provide appropriate and timely language services for patients who are not fluent in spoken English (Schiaffino, Nara, and Mao, 2016). For example, in central and southern Illinois, a deaf patient can expect a 4-hour wait for an ASL interpreter if they receive care at a hospital that does not have language services on staff. This means that the care they receive is contingent upon the availability, timeliness, and appropriateness of language services.
Healthcare Help-Seeking and Access as a Process in Time and Space
In the previous section, the experience of healthcare access spanned spatial and temporal scales. From months to minutes, and miles to steps, access is not just an outcome, but a process toward a set of outcomes- of which service use is one. Healthcare help-seeking does not always result in service use- and not all service use is timely. There are myriad factors underpinning delayed or foregone care among disabled patients. This is complicated by the fact that disability is more common among members of minoritized racial and ethnic groups in the U.S., who also experience greater barriers to healthcare access (higher rates of uninsurance, longer distances to care) while being more likely to have delayed diagnoses and more severe health states.
It is important to consider the context of healthcare help-seeking and service use to understand why a patient may appear to be ‘non-adherent’ with their treatment. If, for example, during a ENT consult, an older patient with hearing loss appears to have difficulty hearing with their hearing aids or cochlear implants and the software embedded in their device indicates low use, it is possible that (a) their manual dexterity makes changing their hearing aid batteries or cleaning their ear molds difficult, or (b) their hearing loss may have progressed, and (c) the hearing aid or cochlear implant programming no longer meets their needs.
Or, for example, if a patient has not filled a prescription, it may be that the price of the medication is a barrier (in fact, 51% of survey respondents with Employer-Sponsored Insurance or ESI- reported that someone in their household postponed or skipped medical care or prescription drugs in the past year), or that the cost of accessing a pharmacy weighs heavily against their available resources (mobility constraints, access to transportation, or unstable housing that makes budgeting for medication costs nigh impossible). On the aggregate, disabled and chronically ill patients experience more transportation barriers in the process of help-seeking and service use (Syed, Gerber, & Sharp, 2013). Further, where state Medicaid programs cover non-emergency transportation to medical care (non-emergency medical transportation (NEMT)), those services may not necessarily enable access to all providers who accept patients with Medicaid coverage, and worse, the proposal to make non-emergency medical transportation (NEMT) optional may exacerbate an already-inequitable situation, affecting state Department of Transportation budgets.
Rather than focus solely on the individual-level facts, and framing patients as “non-adherent” or casting patients as unreliable narrators when their health states fluctuate, it is helpful to consider the social needs in their daily lives, in addition to the social determinants of health. First, it is important to understand the difference between “social needs” and “social determinants of health” (SDoH) (Green & Zook, 2019). “Social needs” are individual-level needs that can be identified and addressed by health systems. SDoH, however, refer to the outcomes of social ordering and (in)equitable distribution of resources that confer health benefits to some, while disadvantaging those who do not have access to the same resources. The World Health Organization (WHO) defines SDoH as: “the conditions in which people are born, grow, work, live, and age, and the wider set of forces and systems shaping the conditions of daily life. These forces and systems include economic policies and systems, development agendas, social norms, social policies and political systems.”
We can think of SDoH as structural intervention points for addressing health equity in our communities. For example, in the U.S., housing is a SDoH rooted in histories of racial and class segregation, housing discrimination in private markets, and decades of growth in housing costs while wages have not kept apace. Unstable housing might be identified as a “social need,” but if a patient’s family members and neighbors have similar experiences with high rents and substandard housing quality, a month of rental assistance will not stave off future ailments associated with psychosocial stressors and environmental exposures borne of their housing situations. Unstable housing spills over into other domains, such as food security (lack of refrigeration, trade-offs between filling prescriptions and food and rent). If a disabled person cannot find housing that is affordable and accessible, then it may be difficult for them to fill prescriptions, eat nutritious food, or maintain daily life routines that can improve their health.
This is an entirely different perspective from the clinical gaze- one that takes a bird’s eye view on the societal allocation of resources. For example, practitioners in urban areas may want to consider the growing spatial mismatch between where one lives and works versus where one accesses care in the context of population growth in the suburbs (suburbanization), where transit may have tenuous connections with healthcare services concentrated in a metro region’s urban core. Practitioners in rural areas may want to consider that, rural Medicaid beneficiaries- chiefly older, disabled, and low-income patients- face administrative barriers to keeping their coverage in the form of ‘procedural denials’ that penalize them for living in areas with poor postal service, compounding the disadvantages associated with longer travel distances and times to use healthcare services. Further, healthcare costs (including insurance premiums and out-of-pocket costs) pushed over 7 million people into poverty (Christopher et al, 2018).
Think back to the moment you envisioned earlier. The question now is “what did it take for the patient to arrive there?”
- Penchansky, R, & Thomas JW. (1981). The concept of access: Definition to consumer satisfaction. Medical Care, 19(2), 127-140
- Schiaffino M.K, Nara A, & Mao L. (2016). Language Services In Hospitals Vary By Ownership And Location. Health Affairs. 35(8). DOI: https://doi.org/10.1377/hlthaff.2015.0955
- Wong, S. (2016). Geographies of medicalized welfare: Spatial analysis of supplemental security income in the U.S., 2000-2010. Social Science and Medicine. 160:9-19. doi: 10.1016/j.socscimed.2016.05.018
- Green K, and Zook M. (2019). When Talking About Social Determinants, Precision Matters. Health Affairs Blog. October 2019. Accessed 31 Dec 2019 https://www.healthaffairs.org/do/10.1377/hblog20191025.776011/full/
- Christopher AS, Himmelstein DU, Woolhandler S, and McCormick D. (2018). The Effects of Household Medical Expenditures on Income Inequality in the United States. American Journal of Public Health. 108, 351-354, https://doi.org/10.2105/AJPH.2017.304213
- Holmes, G.M., Morrison, M., Pathman, D., and Fraher, E. (2013). The Contribution of “Plasticity” to Modeling How a Community’s Need for Health Care Services Can Be Met by Different Configurations of Physicians. Academic Medicine. 88(12):1877–1882, DOI: 10.1097/ACM.0000000000000026
- Syed, S. T., Gerber, B. S., & Sharp, L. K. (2013). Traveling towards disease: transportation barriers to health care access. Journal of Community Health, 38(5), 976–993. doi:10.1007/s10900-013-9681-1