1) How do individual physicians contribute to health care disparities? Thinking about an area of health care of particular interest to you, what research do you think could be done to either understand the effect of individual physicians on health disparities, or to decrease this effect?
Whether through language barriers, insufficient cultural competency, recommending treatments that are too costly, implicit bias, or a myriad of other reasons, physicians can contribute to health care disparities. The area of health care that interests me is the care for patients with cognitive decline due to dementia. Through shadowing physicians, volunteering at a day center at the Institute on Aging, and volunteering as a facilitator of a caregiver support group through the Alzheimer’s Association, I have had the opportunity to speak with patients and families about their experience handling dementia care and its management. In several instances, I’ve had family members or patients tell me that they don’t understand what’s happening (why the dementia is there/why medications aren’t working/why they might benefit by making lifestyle changes). I have also noticed that in all of the settings where I volunteer, there are very few individuals who are non-white. In the caregiver support group, for example, many individuals come to every meeting and benefit from the group support, yet they are typically wealthy and white. There have only been a few occasions, however, where persons of color join the group and they typically don't continue to join. I think that research aimed at understanding how to improve physician-patient communication and education around dementia would be helpful. I also would be interested in research that explored various methods of social support and utilization by different demographics so that the support programs were maximally beneficial to as many people as possible.
2) Structural issues within health care delivery are implicated in health care disparities. Please brainstorm 4 structural issues that might contribute to these disparities. Which of these are relevant to your particular area of research, and how?
My 4 structural issues are described below, and the relevance to my research is summarized right after.
Income: Dementia can be one of the costliest diseases to treat for a variety of reasons. At the beginning, it can be hard to recognize if someone only comes in for a short visit, and often a specialty clinic with relatively long assessments is needed to make the diagnosis. Once a diagnosis is made, a host of different medications may be prescribed with trial and error level effectiveness, often a limited time window of effectiveness, and a need to balance with other medications (often requiring multidisciplinary inputs). As the disease progresses, independence becomes limited, and the need for additional caregiving to assist with ADLs is necessary. Caregivers are insanely expensive, and if the caregiver is a loved one/family member/friend, the emotional burden for the patient and caregiver can often cause mental health concerns, reduced ability to work for both parties, etc. Clearly, the patient and supportive network’s income would have a huge role in the way this disease is treated through the type of insurance one has, the financial means one has to address non-insurance costs.
Education: The education that a patient has is often going to affect not only the income/occupation held by the patient, but also the level of understanding that the patient can have about dementia. Dementia is quite complex and not fully understood by even the most cutting edge scientific communities. When explaining dementia to a patient, one may discuss the various regions of the brain and functionality, how that translates into changing cognitive capacity and behaviors, what proteins are and how they are associated with the progressive death of brain tissue, why certain medications might or might not work, why certain preventative or lifestyle changes might work, etc. All of these topics individually require a relatively high level of understanding, and some patients will not be able to understand the disease to a level that assures them that the medical care is sufficient or appropriate. Limited therapeutic success in the face of continuous disease progression is crystal clear, and some patients may lose confidence and struggle to adhere to recommended treatments. On the other end of the spectrum, some patients may trust the recommendations too much, and not understand that there are other treatment options and a plethora of health management options to choose from if the current recommendations aren’t working.
Location: A patient’s geographical location can create unequal travel burdens or even limit the access to clinics that are equipped to effective help those with dementia. Even if a patient has the financial means to utilize the resources available, and even if the patient is educated enough to navigate the resources, it would still be exponentially more difficult for a patient that is 100 miles away from the clinic as opposed to 10 miles away. Distance adds cost, time, and effort.
Policies: It is known that dementia is incredibly expensive, and part of the reason is because many of the services that are required to care for someone with dementia are not covered by insurance. Take caregiving or assisted living homes as an example. There are some forms of insurance, such as long-term health care insurance, which cost a fortune, but do tend to pay out and cover a significant proportion of the care required for dementia. Even if someone has the means to get that type of insurance, they need to have had the foresight to get it, because it is not available for people that don’t meet the eligibility criteria (generally good health), and it is especially not available to someone who is already diagnosed with dementia. For those without the right insurance, they have to pay out of pocket, and caregiving expenses can easily reach $4000-$8000 per month. That’s obviously not an option for many people. There are assisted living facilities with dementia care which cost the same or more. There are also facilities that don’t cost as much, but will require that you have nothing to give before you are allowed to attend. Those and many other acceptable facilities can be quite competitive to gain access, and I’ve heard of cases where individuals are kicked out because they are combative or inappropriate (often resulting from the disease itself). Clearly, there is a need for adaptive insurance plans that can cover the necessary costs for dementia patients.
My research: I’m exploring the use of a smartphone device that can remotely track cognitive capacity, issue surveys about mental health and patient/caregiver burden. The participants in my study also wear a Fitbit that tracks activity like steps, sleep, heartrate, and location. In the future, apps may be useful for functions such as scheduling patient visits, keeping track of medications, connecting the health network for patients, and improving physician and health team communication with patients. All this at the reduced travel burden for patients. Income is still a factor, but smartphone technology can be affordable (the app I use works on both iPhone and android phones). It is my hope that technologies like this can reduce expenses, and I also hope that either the current health policies can incorporate and cover services related to dementia, perhaps subsidizing the costs associate with having an account on the application or otherwise.