The Biggest Health Disparity of All: Control (Part 1)

In any other industry, minority and elderly discrimination would be front-page news. A recent study confirms elderly and minority customers get higher-cost hospital care than other more affluent white customers and are more often exposed to harmful, even deadly outcomes (1, 2). Fact: care for these patients will cost significantly more, yet their health outcomes and personal safety will be compromised. But in health care, it is not news.

This is the nature of health care disparity. But it reveals an even more troubling issue we rarely discuss: information, choice, and control. Not only do these patients receive substandard, over-priced care (1), they likely don’t even know it! The system limits information, limits choice, and offers patients little control over their options. In this and a subsequent blog, we will explore how lack of choice and control institutionalize the very disparities we aim to eliminate.

Disparities Are Real
It’s hard to dispute the facts; there are huge variations in health status and health resources among U.S. citizens. Comparing the most and least fortunate, differences are evident in every category: prevalence of risk factors and chronic illnesses (3); the availability of high-quality care (2); rates of preventive services (4); rates of premature mortality (5); and regular sources of care (6).

Nor are people surprised to learn that health disparities are closely linked to disparities in income and education (7). Health and health care delivery are worst among ethnic minorities, rural and poor communities, immigrants, and the elderly (7, 8). Despite decades of attention and investment by private and public agencies, the distance between the “haves” and “have-nots” remains as wide as ever (9).

While the persistence of disparity is undeniable, opinions differ about which precursors matter most. Last month’s issue of Health Affairs was dedicated entirely to disparities (10), with varying reports and commentaries about which factors are most predictive of disparities, such as where you live versus who you are, and which policy changes would do the greatest good and produce the greatest improvement for those suffering at the bottom of the disparity ladder. With few exceptions, the focus is on what we can do for them or give to them.

Maybe It’s Time to Revise Our Definition of Helping in Health Care
What if giving people free services that are controlled and funded by someone else is part of the underlying problem? While done with the best of intentions, giving someone what others think is best for them may not be the solution. Consider the Grameen Bank case study: In 2006, Mohammed Yunus won the Nobel Prize for Peace for founding and growing Grameen Bank. Known as the ‘banker to the poor.’

Yunus has been credited with lifting millions of people out of poverty through his approach to microlending. His journey began in 1976 after unsuccessfully trying to apply traditional thinking from his economics degree to solve the severe poverty crisis in his native Bangladesh. He soon observed that many charitable organizations didn’t solve problems in the long run. They simply perpetuate dependence and, worse, divert resources to sustain their own jobs. With charity, the poor had another day of meals or shelter, but no greater ability to provide their own. A generation of charitable, well-intentioned giving had not altered the rate of poverty.

Yunus went to bank managers and asked whether they would be willing to lend money to villagers to start small businesses. The answer was, universally, no. These poor, uneducated borrowers could not be trusted to handle money; the risk of default was too great. So, he began lending his own money, and by the late 1990s, founded his own Grameen Bank. Fifteen years later it had funded almost 10 million women entrepreneurs, many of whom were previously homeless street beggars, created billions of dollars in assets among people who once had none, built millions of homes, helped tens of thousands of children get to college, and established an entire generation of job-creators across the globe. Not one dollar was given charitably; it was loaned for the purpose of starting a business, repaid with interest at a default rate of less than 2 percent, and loaned again. Almost 700,000 loan recipients have gone on to build new homes (11).

The Grameen approach is now alive in the U.S., loaning to almost 10,000 poor, unemployed women who are starting their own businesses and becoming financially independent (12). Globally, microcredit is reducing poverty on every continent (13).

Perhaps the most powerful aspect of Yunus’ approach is his belief that every person has the ability to create a sustainable livelihood for his family, given basic financial backing and social support. Many, many experts said his idea was ridiculous and destined to fail. To those experts, people in poverty needed others to help them, because they could not help themselves. But Yunus saw things differently. Had he not believed in recipients’ innate ability, it never would have occurred to him to lend money to penniless, illiterate villagers living in dirt-floored huts.

The Parallel to Health Care?
Before they became Grameen borrowers, poor women did not learn money, business, and investing skills by receiving donated goods from charities. They learned skills by becoming involved in designing and running their own businesses. The answers weren’t handed to them by an all-knowing outside party. Rather, these women had to decide for themselves what to produce, what to charge, and how to pay on their loan each week. Their rewards: self-sufficiency, pride, financial security, and belonging—and on a larger scale—finally a solution to an urgent humanitarian dilemma.

Today, as recipients of care, the U.S. health system feels more like a charity than the kind of successful business exchange Yunus and countless others have proven can work. Perhaps it feels this way because someone else, the government or a health plan, grants us permission to receive certain services and then pays for those services through external arrangements. The system largely assumes that we, patients, are incapable of understanding our choices, let alone have a chance of making good ones. Even the most educated among us have experienced health care situations where our input was neither requested nor considered; it is easy to feel disempowered.

Policymakers often support efforts to give patients more services: more access, more programs, more screenings, but rarely do we hear a real innovator show interest in giving people more ownership, more choices, and more control over the resources and decisions being handed down upon them.

Medicaid is a perfect example. Patients are not perceived as customers whose business must be earned with high-quality service; rather, they are charity cases for which providers are reimbursed by an outside party. Like villagers before Yunus arrived, the system perceives poor and uneducated patients as incapable, and so we restrict information, choice, and control. The result: disparities. Without control over their choices, poor patients end up exactly where they find themselves today: at lower-quality, higher-cost hospitals, unaware of the risks.

The Answer to Disparity? A Presupposition of Ability Rather Than Inability
When Yunus started, virtually none of his borrowers had any formal education, business experience, or money management skills. Levels of poverty were far worse than in the U.S. However, with minimal training and a small support group, millions of women were able to create, grow, and sustain successful trades with regular income.

Because this model has been repeated in village after village and country after country, we know that self-reliance is not a rare characteristic. If we dare to imagine the untapped potential of our most vulnerable and release preconceived notions about the inherent (dis) abilities of poorer, older, ethnically diverse people, we stand a chance of designing new solutions. With the right support and belief in one’s right to do so, everyone can learn about money, everyone can engage in business negotiations, everyone can make decisions about value. We have the tools to eliminate disparity, but we have to believe in the people we are so desperately trying to help.

In the next blog, we will discuss how providers limit patient choices based on their preconceptions of patient abilities and describe the only way patients can take control.

At Altarum, our Center for Consumer Choice in Health Care is supporting a collaboration to develop real-time social media indicators of consumerism attitudes and activities in health and health care. Stay tuned for upcoming developments.

References

1.     Jha, A. K., Orav, E. J., & Epstein, A. M. (2011, October). Low-quality, high-cost hospitals, mainly in South, care for sharply higher shares of elderly Black, Hispanic, and Medicaid patients. Health Affairs (Millwood), 30(10), 1904–1911.

2.     Werner, R. M., Goldman, L. E., & Dudley, R. A. (2008, May). Comparison of change in quality of care between safety-net and non-safety-net hospitals. JAMA, 299(18), 2180–2187.

3.     Danaei, G., Rimm, E. B., Oza, S., Kulkarni, S. C., Murray, C. J., & Ezzati, M. (2010, March). The promise of prevention: the effects of four preventable risk factors on national life expectancy and life expectancy disparities by race and county in the United States. PLoS Medicine, 7(3), e1000248.

4.     Partnership for Prevention. (2007). Preventive care: A national profile on use, disparities, and health benefits. Retrieved November 3, 2011, from http://www.rwjf.org/files/publications/other/PreventiveCareReportFinal080707.pdf.

5.     Chen, J. T., Rehkopf, D. H., Waterman, P. D., Subramanian, S. V., Coull, B. A., Cohen, B., et al. (2006, November). Mapping and measuring social disparities in premature mortality: The impact of census tract poverty within and across Boston neighborhoods, 1999–2001. Journal of Urban Health, 83(6), 1063–1084.

6.     Bliss, E. B., Meyers, D. S., Phillips, R. L., Jr., Fryer, G. E., Dovey, S. M., & Green, L. A. (2004, September). Variation in participation in health care settings associated with race and ethnicity. Journal of General Internal Medicine, 19(9), 931–936.

7.     Woolf, S. H., & Braveman, P. (2011, October). Where health disparities begin: The role of social and economic determinants—and why current policies may make matters worse. Health Affairs (Millwood), 30(10), 1852–1859.

8.     Probst, J. C., Bellinger, J. D., Walsemann, K. M., Hardin, J., & Glover, S. H. (2011, October). Higher risk of death in rural Blacks and Whites than urbanites is related to lower incomes, education, and health coverage. Health Affairs (Millwood), 30(10), 1872–1879.

9.     U.S. Department of Health and Human Services. (2011, October 6). HHS releases assessment of Healthy People 2010 objectives. Retrieved November 3, 2011, from http://www.cdc.gov/nchs/data/hpdata2010/hp2010_final_review_press_release.pdf.

10. Dentzer, S., ed. (2011, October). A nation at risk for wider health disparities. Health Affairs (Millwood), 30(10), 1818.

11. Grameen Bank. (2011, August 23). Credit delivery system. Retrieved November 3, 2011, from

12. Grameen America. (2011, September). How Grameen America works: Social impact. Retrieved November 3, 2011, from http://www.grameenamerica.com/how-we-work/social-impact/social-impact.html.

13. Mohindra, K. S., & Haddad, S. (2005). Women’s interlaced freedoms: A framework linking microcredit participation and health. Journal of Human Development, 6(3), 353–374.

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