The Biggest Health Disparity of All: Control (Part 2)

Patient Activation is a popular topic in recent health policy discussions. Activation means that a patient is informed, participating in his or her care, and feels comfortable and involved in decisions (1). It sounds powerful. Lower activation is associated with a higher rate of medical errors (2, 3), lower adherence to recommended medication (4), and lower satisfaction with care (2). Conversely, active participation in decision making results in less expensive treatment choices (5), faster recovery (6), and better perceived outcomes (5).

Activation is yet another area where we find health disparity. Not only do minorities report more unmet health needs, but a recent study confirms that low activation is a stronger predictor of unmet health needs than not having insurance. In fact, minorities, lower-educated, lower-income, and elderly citizens are the least “activated” among patients (7). As patients become more apt to participate in and make requests of health care, they overcome some of the barriers attributed to lack of access.

So, wouldn’t we want all patients to be “activated”? Not so fast.

Studies indicate that a doctor or health provider’s preconceptions about a patient’s education, ethnicity, or social-economic status alter not only treatment decisions, but also time spent answering questions or discussing options (8, 9, 10). Physicians assign lower expectations to some patients, which results in a more directive and less participatory style (9). While there are certainly exceptions, it seems that in many cases the health care system has determined that certain people are incapable of understanding their health issues and making their own decisions.

In Part 1 of this blog, we examined the parallels between health disparities and lessons learned through the global microlending movement. Briefly, we considered whether some elements of health disparity result from presumptions about the inability of some people to manage their own health and health care choices. Microlending began when Dr. Yunus could not find a bank that would lend money to the poor. In health care, sometime we see a similar lack of confidence in individual ability.

When a system presumes a group of people incapable of making good choices, that system limits both the amount of information and the spectrum of choices available to them. We limit resources to what we think others need, rather than providing information and options from which they can choose. When someone else decides for you, you may gain services, but you lose ownership and self-efficacy.

Isn’t It Possible That Our Low Expectations Contribute to Disparities?
Does protecting patients from choices really protect them?

In this case, the desire to protect individuals from making a bad choice actually keeps consumers in the dark about avoidable danger and cost. We don’t want them actively making the wrong choice, so we allow them to unknowingly be exposed to poor and sometimes dangerous care.

Regardless of whether lower activation influences physician perception, or provider perceptions discourage activation, the cycle is self-perpetuating. When not encouraged to actively participate, consumers learn to accept limited information and choice. When not exposed to information, consumers are under-informed about safer and more cost-effective alternatives. Seeing patients as uninformed, providers perceive that they are not able or interested, and don’t actively encourage choice. Because Medicare and Medicaid patients do not pay directly for most services, they have no need to know the cost. Thus, providers perceive that patients have no interest and don’t share, or bother to learn, the cost. Consumers learn not to ask, and providers learn not to share.

Further, when we presume that we can make better choices for them than they can make for themselves, we ultimately perpetuate disparities that we say we wish to eliminate.

The Illusion That Making Decisions on Someone Else’s Behalf Is Helpful
Given the dismal rate of errors in diagnosis and treatment, combined with the high portion of treatments that have no proven effectiveness (11), it seems presumptuous to assume that a decision by a medical professional is more appropriate than a decision made by an informed consumer. One can argue that 85 percent of decisions—whether to take daily medications, whether to see a doctor, what type of doctor to see, what to eat, etc.—are already in the hands of patients. There are enough decisions being made now by consumers to advocate giving them the tools and support they need to make choices in an informed way.

One could argue that not asking individuals to make decisions about care choices (price, quality, safety, effectiveness) contributes to the ultimate type of disparity: that of control. Further, when we presume that we can make better choices for them than they can make for themselves, we ultimately perpetuate disparities that we say we wish to eliminate.  How does it help patients to keep them unaware of the poor care they might be getting in their local hospital?

Shifting Perception from Charity to Business
The fundamental shift Mohammed Yunus made in fighting poverty was to presume that everyone has innate abilities to create and sustain a livelihood. Presuming that individuals can and should make decisions about their own health could have a similarly transformational effect. There is already evidence that microlending, though intended to reduce wealth rather than health disparities, results in improved prenatal health behaviors (12).

There is precedent for giving Medicaid recipients control through purchasing power. Fifteen states offer Cash and Counseling options, whereby recipients can use state money to choose and pay for family members to care for them, rather than using Medicaid-designated providers. The result: higher satisfaction and fewer unmet health needs (13).

Like any new skill, understanding and managing a health issue requires learning and support. Understanding Medicare Part D was not a welcomed activity, yet most seniors know how to make a selection and the shift to lower-cost generic medications did not take long once there was a financial incentive to consider costs (14). Similar to new Grameen Bank borrowers, new decision makers need support, but they learn quickly if they have some ownership in the success.

As much as we would like it to be otherwise, the only real power in health care is purchasing power, or the option to take one’s business elsewhere and choose a different provider or hospital. Like Medicaid enrollees in Cash and Counseling and Medicare Part D users, control results from the power to choose where to spend resources. Today, Medicaid patients are not perceived as customers whose business must be earned; they are charity cases for which providers receive reimbursement from an outside third party. When poor and minority consumers spend money for services, their quality of care changes. As purchasers, they are now a source of revenue, so the motivation to restrict information or choice goes away. When people spend their own funds, dynamics change.

Consumers who enter the system for the first time, such as with a health savings account, learn quickly that medical personnel are under-informed about price. It takes some persistence to get answers, along with the conviction that one has the right to know. It takes the same conviction and persistence to ask questions about medications, treatments, procedures, and options. It takes the same conviction and confidence to ask the questions that may prevent an error or an unnecessary test. So, the shift will require both cash and “counseling.” First, one must know he has the right to make choices, then he will need information and support in making them.

Releasing millions of “activated” people into a marketplace armed with dollars and free to make choices can go a long way toward reducing inequities. Employers are trying to encourage this new form of market pressure by giving their workforces the dollars and tools to participate in health care choices. But beyond these private-sector efforts, and a few states such as Indiana and Wyoming (15, 16), few projects go beyond narrow elements of choice.

Presume that each person is capable of making good choices for herself and her family, given the information and funds to do so. Like the 20 million borrowers who have lifted themselves out of poverty through Grameen and others, (12), maybe with our confidence, activated consumers hold the keys to erasing disparities themselves.

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.


1.     Hibbard, J. H., & Cunningham, P. J. (2008, October). How engaged are consumers in their health and health care, and why does it matter? Research Briefs, 8, 1–9.

2.     Weingart, S. N., Zhu, J., Chiappetta, L., Stuver, S. O., Schneider, E. C., Epstein, A. M., et al. (2011, June). Hospitalized patients’ participation and its impact on quality of care and patient safety. International Journal for Quality in Health Care, 23(3), 269–277.

3.     Institute for Safe Medication Practices. (2011). Consumers can prevent medication errors. Retrieved September 16, 2011, from

4.     Naik, A. D., Kallen, M. A., Walder, A., & Street, R. L., Jr. (2008, March 18). Improving hypertension control in diabetes mellitus: The effects of collaborative and proactive health communication. Circulation, 117(11), 1361–1368.

5.     Kennedy, A. D., Sculpher, M. J., Coulter, A., Dwyer, N., Rees, M., Abrams, K. R., et al. (2002, December 4). Effects of decision aids for menorrhagia on treatment choices, health outcomes, and costs: A randomized controlled trial. JAMA, 288(21), 2701–2708.

6.     Clark, N. M., Janz, N. K., Dodge, J. A., Mosca, L., Lin, X., Long, Q., et al. (2008, September). The effect of patient choice of intervention on health outcomes. Contemporary Clinical Trials, 29(5), 679–686.

7.     Cunningham, P. J., Hibbard, J., & Gibbons, C. B. (2011, October). Raising low “patient activation” rates among Hispanic immigrants may equal expanded coverage in reducing access disparities. Health Affairs (Millwood), 30(10), 1888–1894.

8.     Fiscella, K., Goodwin, M. A., & Stange, K. C. (2002, March). Does patient educational level affect office visits to family physicians? Journal of the National Medical Association, 94(3), 157–165.

9.     van Ryn, M., & Fu, S. S. (2003, February). Paved with good intentions: Do public health and human service providers contribute to racial/ethnic disparities in health? American Journal of Public Health, 93(2), 248–255.

10. van Ryn, M., & Burke, J. (2000, March). The effect of patient race and socio-economic status on physicians’ perceptions of patients. Social Science & Medicine, 50(6), 813–828.

11. Kumar, S., & Nash, D. B. (2011, March 25). Health care myth busters: Is there a high degree of scientific certainty in modern medicine? Retrieved September 26, 2011, from

12. Willems, S., De Maesschalck, S., Deveugele, M., Derese, A., & De Maeseneer, J. (2005, February). Socio-economic status of the patient and doctor-patient communication: Does it make a difference? Patient Education and Counseling, 56(2), 139–146.

13. Foster, L., Brown, R., Phillips, B., Schore, J., & Carlson, B. L. (2003, January–June). Improving the quality of Medicaid personal assistance through consumer direction. Health Affairs (Millwood), Web Exclusive, W3-162–175.

14. Fiegl, C. (2011, August 1). Medicare spends 50% less on Part D drugs than initially estimated. Retrieved November 3, 2011, from

15. Daniels, M. (2010, March 1). Hoosiers and health savings accounts: An Indiana experiment that is reducing costs for the state and its employees. Retrieved November 2, 2011, from

16. Healthy Families Succeed. (2009, March 12). Wyoming Health Care Reform Demonstration Pilot (Healthy Frontiers). Retrieved November 3, 2011, from



Thanks for your insights. Have you also considered the role of community health workers? CHWs are an integral part of the solution to addressing health disparities. As trusted and knowledgeable members of the communities they serve, CHWs empower individuals, help build community capacity for better health and provide a critical link leading to improved coverage, care and outcomes. There are many opportunities under health care reform to more fully integrate this key role into policies and practice models.

Thanks for your comment. Yes, there are roles for many others (community workers a good example) to consider how we engage more people in their own care.

Patient activation is directly linked to health literacy. We need to concentrate on developing the health literacy of the population, and there is great scope for the use of technology to do this. Part is education and part is developing a culture of accountability amongst health providers and consumers.

Thanks for your comment. We agree about both parts.

While Health literacy research confirms Dr Lynch’s argument that the healthcare system has a tendency to assume that certain people are incapable of understanding their health issues and making their own decisions, and that this may contribute to disparities, caution is due.

Healthcare is highly technical and rapidly changing. It has its own vocabulary and culture. Nearly everyone has difficulty making personal meaning from complex information about a new condition and treatment options and applying it in context. So direct assistance in making treatment decisions and prevention planning is a necessary element of patient activation.

And while the comparison of healthcare decision making and financing to micro-lending makes a good point, the comparison does not hold up. This is because managing health and healthcare in the US requires an array of cognitive, interpersonal, critical and advocacy skills well beyond what it takes to buy a cow and sell the milk in the village. Similarly, comparing treatment options, risks and costs is infinitely more complex than repaying a small loan.

Sandra Smith, PhD, MPH
Center for Health Literacy Promotion

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