Americans are stressed out about health care.
Whether it concerns costs, access to treatment or ability to navigate the system, the American Psychological Association, in its 2019 Stress in America survey, found that 69% of people in the United States say health care is a major source of stress in their life.
We’re also stressed about privacy and data security. We live with a patchwork quilt of laws but no overarching protection that allows us to control our personal information.
As Americans, we need to demand our health citizenship. What does this mean? That people claim health care and data privacy as civil rights.
Polls show that most Americans, from top income earners to people living with much less, believe that it’s unfair for wealthier people to have access to better health care.
In an election year where there seems to be little consensus, two issues on which most American voters agree is the need to lower prescription drugs costs and to protect patients with preexisting conditions. These are priorities that cross party lines in 2020.
What’s driving this cross-party consensus? It’s the reality of patients spending increasingly higher amounts of household income on high-deductible health plans, medical services and prescription drugs. Forcing patients to have more financial “skin in the game” has led millions of Americans to forgo care altogether or to self-ration care by not getting recommended tests and not filling prescriptions.
The second driver for the declaration of health citizenship is the urgent need to protect our personal health information.
In 1996, when the Health Insurance Portability and Accountability Act was enacted, the introduction of the iPhone was 11 years away. The internet was dial up to AOL, CompuServe and Prodigy. And per-capita spending on health care averaged $3,759 (in 2018, it was $11,172).
Health care in 2020 is digitally based, with most physicians and hospitals in America using electronic health records and providers conducting care online via web-based services. Health care is quickly moving to the home, to our cars and even inside our bodies with implants. Wearable technology, remote health monitoring and mobile apps increasingly support our self-care and shared-care with clinicians.
Our health data is vulnerable
Those interactions create new data points. So do daily interactions with our phones and retail purchases. That information, when mashed up with our health care data, can be used to predict our health status, identify emergent conditions like a heart attack or stroke, and customize medications for patients.
But the data generated by our daily lives, outside of HIPAA-covered entities such as doctors, hospitals and pharmacies, is not for the most part covered by existing laws. We are exposed to third-party brokers who monetize our data without telling us how it’s used and without sharing the revenue they make from our personal information.
Universal care is basic right
What would a new era of health citizenship look like? Every American would be covered by a health plan — however we fashion it.
Universal health care, American-style, could come in many forms, including through proposals under debate during the election cycle. All residents in our peer nations in the Organization for Economic Cooperation and Development enjoy some form of health care plan. Most of these countries spend less on health care per person and realize better health outcomes.
One reason is that those nations spend more per person on social factors that help determine a person’s health.
Education, for example, is a major predictor of people’s health. Sir Angus Deaton and Anne Case’s research into the “deaths of despair” in America identified lack of education as a risk factor. Lawmakers need to “bake” health into food and agriculture, transportation, housing and education policies to improve the health of all Americans regardless of income or education levels.
We also need to help people understand the growing role of data in everyday life. Virtually everyone leaves digital dust in the use of mobile phones, credit cards and online transactions. Our peers in Europe enjoy the privacy protection afforded by the General Data Protection Regulation, which defends the “right to be forgotten.” In the United States, we lack laws that sufficiently protect our personal data.
Voting is part of health citizenship, too. The Stress in America survey cited the 2020 presidential election as a major source of Americans’ stress. Let’s make the act of voting a part of our pursuit of good health
Jane Sarasohn-Kahn is author of “Health Consuming: From Health Consumer to Health Citizen.” She also writes the Health Populi blog.