Advocating for change: The power of physicians to give voice to patients

Now is a time of transition in our nation. As physicians, regardless of our background or upbringing, we hold positions of power and privilege in society. We must use our power to give voice to our patients and communities.

As primary care physicians, we have our fingers on the pulse of our communities and a responsibility to uplift the needs of our patients and advocate for systemic change. As we have seen day in and day out, our patients are facing unimaginable challenges. They are getting sick and dying from COVID-19, and many are hurting from the economic fallout of the pandemic. Our Black and Brown communities, which form the backbone of our nation’s essential workforce, have been disproportionately affected, both from higher rates of COVID-19-related infections, hospitalizations and deaths, and from bearing a greater financial burden.

Some of the areas that our communities are struggling most with include unstable housing, food insecurity and job loss — which includes loss of income and financial reserve, as well as subsequent loss of employer-sponsored health insurance and further lack of access to affordable medicines. There is also the issue of children, particularly children of color, falling behind in education. Many parents are struggling with work and trying to facilitate remote learning for their children. Many children lack access to reliable internet and computers, which are critical for succeeding in a remote learning environment. All these issues are increasing the social divides that already exist in our society and, as physicians, we must act now to uplift these stories in order to address and abolish the underlying inequities that persist in our nation.

Story sharing as advocacy

When our patients share their stories and struggles with us, we reflexively try to individually help them. However, as we hear similar patterns of stories from our patients grappling with our country’s widening disparities, we hold a special position where we can transform our collection of stories into action that has the potential to improve the health and well-being of everyone in our nation.

There are numerous opportunities to engage with elected officials and government agencies at the local, state and national levels. For those who have never met or corresponded with their elected officials, reaching out to them may feel like a daunting task. It is important to remember, however, that our elected officials are in office because we, our patients and our communities voted for them, and they are here to represent all of us and address our communities’ collective needs.

As PCPs, we do not hesitate to call an oncologist to coordinate the care of a patient with a rare, life-threatening cancer requiring prompt, specialized treatment to optimize a patient’s chance of survival and overall health outcomes. Similarly, we should not hesitate to call our elected officials when our patients are facing dire and life-threatening consequences stemming from existing inequities that can be eliminated through thoughtful policy change.

Elected officials want to hear physicians’ perspectives because they know we are always listening to our patients and we bring our patients’ stories with us as we highlight the issues that exacerbate the problems our patients encounter. These stories often form the foundation of proposed legislation, as they give a face to the issues at stake and help to garner widespread support for passing and enacting new legislation. Further, with our direct patient experiences and interactions with the health care system, we often develop specific and powerful suggestions for change, which is of great interest to congressional offices and government agencies as they work to develop strategies to implement new policies.

While there are several ways to contact elected officials’ offices to share patient stories and provide suggestions for policy change — such as through phone calls and personal emails — scheduled meetings with member offices are particularly powerful. Because of the COVID-19 pandemic, most of these meetings are now happening over the phone, which makes some of these offices more accessible, particularly since we no longer have to take time off to travel to state capitals or Washington, D.C. to meet with officials in person.

Virtual meetings with elected officials also make it easier for us to bring our patients to these meetings, so that our patients can personally share their stories. Members of Congress and their staff value the power of a patient’s story because it grounds an issue at the level of a person’s experience and directly demonstrates how policies are either helping or hurting a person. This is vital to providing funding and developing policies and systems that will better meet the needs of our communities.

When we uplift patients’ stories to improve financial access to vital medicines, safe housing and nutritious food or to ensure that they have access to comprehensive, affordable, high-quality health care, it is important to note that we are not being political. Rather, we are supporting our patients by using our position of power to create conditions in our society that will allow our wider community to achieve optimal health in the same way we routinely advocate at the individual level for our patients to have necessary treatments authorized by health insurance companies. Since we already spend each day advocating for our patients in the clinical setting, we should also actively advocate for our patients and our communities at the government level.

Addressing social determinants of health

Social determinants play a key role in health outcomes. Much of our work in medicine and primary care is data driven. It is, therefore, essential that we do our part in collecting and compiling data related to social determinants of health, such as access to safe housing, food, water, electricity, education, transportation and employment. Without access to these essential social needs, it becomes extremely challenging to remain healthy.

To put this into context, for patients with diabetes who are financially unstable and based in food deserts without access to transportation, it becomes impossible to optimally manage their diabetes because they cannot purchase nutritious foods or afford insulin. Even if they are able to acquire insulin, they might not have a refrigerator or reliable electricity to adequately store the insulin, particularly if they are homeless or unstably housed. This makes them much more likely to develop severe complications from diabetes or die a death that could have otherwise been prevented. We should regularly share these stories to ensure that social determinants of health are comprehensively addressed when developing local and national health policies.

There are tools that can help us collect information on our patients’ social determinants of health, which not only allow us to better meet our patients’ individual needs, but also enable us to build the data necessary to advocate for system-level interventions to more comprehensively meet the needs of our communities. One of these tools is the Protocol for Responding to and Assessing Patients’ Assets, Risks and Experiences (PRAPARE) Questionnaire, which is an excellent resource for collecting data on social determinants of health that can be incorporated into patients’ electronic health records. This tool was created through a collaboration with the Association of Asian Pacific Community Health Organizations, the National Association of Community Health Centers, the Oregon Primary Care Association and other partners, and is commonly used in the community health center setting to collect and report data on patients’ access to housing, food, transportation and other essential needs that comprise the social determinants of health.

When caring for patients with complex social needs, it is also helpful to include the ICD-10 Z codes — such as those that denote homelessness or that identify patients with lack of adequate food and safe drinking water — in patients’ clinical problem lists within the electronic health record because these social determinants of health ICD-10 codes highlight social needs, which flag patients who may require additional resources or support and helps us better coordinate their care.

At the clinic level, we must build strong interprofessional teams that include social workers and/or community health workers who can comprehensively address patients’ health and social needs. But our work does not stop here. We must also communicate our patients’ stories and the data we collect on their social determinants of health to elected officials and government agencies, so that we may develop population-level interventions that broadly address the systemic roots of existing health inequities, in order to improve national health outcomes.

Larger-scale public health implications

A vital component of improving health at the population level is ensuring access to quality health care.

There have been initiatives to collect patient stories that highlight how the lack of Medicaid expansion in certain states has prevented uninsured individuals from accessing necessary health care, resulting in poorer health outcomes.

When revisions to the public charge rule were initially proposed during the previous administration, many immigrant families legally in the U.S. decided to disenroll themselves and their families from Medicaid due to the chilling effects of the proposed regulation at that time, resulting in loss of access to health care and fear of seeking care when sick.

Throughout the COVID-19 pandemic, individuals with fewer financial resources — many of whom are uninsured or underinsured — have not had the ability to seek medical care or stay home from work when sick due to limited finances, or they have lost their jobs after having to take weeks off from work when infected with COVID-19. This has resulted in worse health outcomes for themselves and their families and has, at times, placed their personal financial survival at odds with public health recommendations, as well as their personal health, when they have been faced with no paid sick leave but have had to stay home to self-quarantine to protect those around them from getting sick and have then decided to not seek emergency medical care even when in severe respiratory distress due to the fear of unaffordable medical bills from a hospital visit.

We should all be advocating for our patients and communities by compiling and conveying these stories to ensure that everyone in our nation has access to quality, affordable health coverage, as well as other essential services such as paid sick leave to protect the health of all families in our nation.

Addressing widening disparities

As PCPs, every day we see examples of how disparities in health outcomes form based on patients’ health insurance status and access to health care.

We all have stories of our patients with low-deductible, comprehensive health insurance coverage who have the means to go for regular preventive health screenings and had a breast cancer diagnosed and treated at the earliest stage, with excellent health outcomes and long-term survival. At the same time, we have stories of our patients who are the sole caregivers for their families who have lost their health insurance when they lost their job or have $10,000 deductible limited benefit health insurance plans who have noticed an enlarging mass, but for financial reasons were too afraid to seek care because they thought they would lose their home or go into bankruptcy due to the associated catastrophic medical bills to treat an undiagnosed cancer, that they have then died from, leaving behind their families who have subsequently gone into financial ruin.

It is essential that we convey our patients’ stories to our elected officials and government agencies, so that our patients do not just represent health statistics that are analyzed, but rather are transformed into the powerful faces and voices illustrating their experiences that can influence the development and implementation of policies that effectively end our nation’s social and health inequities.

We are at a key point in our nation’s history and we must come together as physicians to use our power to stand up with and for our patients at the local, state and national levels to advocate for access to high-quality, affordable health care in order to improve the health of our patients and the nation. We must also work to eliminate the social, racial and ethnic health disparities that exist in each of our communities in order to finally achieve health equity throughout our nation.

References:

CDC. COVID-19 hospitalization and death by race/ethnicity. https://www.cdc.gov/coronavirus/2019-ncov/covid-data/investigations-discovery/hospitalization-death-by-race-ethnicity.html. Accessed Feb. 5, 2021.

National Association of Community Health Centers. About the PRAPARE Assessment Tool. https://www.nachc.org/research-and-data/prapare/about-the-prapare-assessment-tool/. Accessed Feb. 5, 2021.

National Association of Community Health Centers. PRAPARE. https://www.nachc.org/research-and-data/prapare/. Accessed Feb. 5, 2021.

National Association of Community Health Centers. PRAPARE Implementation and Action Toolkit. https://www.nachc.org/research-and-data/prapare/toolkit/. Accessed Feb. 5, 2021.

Urban Institute. COVID-19’s disproportionate effects on children of color will challenge the next generation. https://www.urban.org/urban-wire/covid-19s-disproportionate-effects-children-color-will-challenge-next-generation. Accessed Feb. 5, 2021.