Patient Empowerment by Decision Making Literacy

"Decision Making Literacy" is a new phrase to enter into our industry's lexicon. It is intended to add depth and dimension to the critical issue of patient-informed consent and empowerment at a critical moment of change that will help determine our success in improving the quality and efficiency of medical care to the benefit of patients, providers, and payers.

Joe Gattuso

The Privilege and Burden of Choice

The Patient Protection and Affordable Care Act (PPACA) includes significant attention to health literacy and medical decision making. These competencies will become an increasing necessity as the privilege and burden of greater autonomy is placed on the consumer/patient—and they will increasingly become areas of patient support that will be measured and evaluated by all advocates for improved healthcare quality and efficiency.

There are many definitions of health literacy to be found. One very good one is included in the "Healthy People 2010" report issued by the US Department of Health and Human Services. In this report, health literacy is defined as: "The degree to which individuals have the capacity to obtain, process, and understand basic health information and services needed to make appropriate health decisions."

Despite the appropriateness of this definition, however, the vast majority of programs and resources that our industry puts into addressing this issue revolves around only one aspect of literacy—the effort to align the grade-level sophistication of the language in which information and education is written and presented to most patients. The idea, of course, is that if the patient cannot understand the language in which information about their health is communicated, then nothing is accomplished at the fundamental level of information transfer.

Decision-Making Literacy

Linguistic Competency—Necessary But Not Sufficient

An appropriate way to refer to this aspect of health literacy is "linguistic competency," concerning the basic understanding of the dictionary definition of the language and some basic facts necessary for patient education. And this is, without doubt, essential for patient understanding, engagement, and empowerment.

However, when we closely examine the attitudes and behaviors that patient education programs aim to alter, we learn that linguistic competency is necessary—but not sufficient—for informed consent and medical decision making.

There are two additional competencies that must be added in order to create the necessary preconditions for informed consent and patient empowerment—conceptual competency and statistical competency.

Conceptual Competency

Conceptual competency refers to the ability to place information about diagnosis and recommended treatment in a "cause-and-effect" context. This is an essential step that transforms a collection of facts about a particular diagnosis and the treatment options offered to treat that condition into real and useable understanding.

For example, if a patient has been diagnosed as having hypercholesteremia, he needs to know that this means he has "high cholesterol." He needs to know his goals for total cholesterol—LDL and HDL. And he needs to know that high cholesterol, if left untreated, can lead to a heart attack or stroke.

However, if he is to truly participate in the decision to treat his high cholesterol, he needs to understand more. The patient needs to understand that cholesterol comes from what he eats and that cholesterol is manufactured in the liver. The patient needs to know that the medication recommended by his physician (a statin, for example) acts in the liver to reduce the amount of cholesterol that is being manufactured by the body—thereby reducing his total cholesterol and LDL counts.

By understanding the connection between how the disease works in his body and how the prescribed medication counteracts the disease in a cause-and-effect context (albeit a simple one), he is much better equipped to understand why taking his medication every day is essential to his health—better able to understand the rationale for the "benefit" half of the classic and essential risk/benefit ratio that is the cornerstone to all medical decision making.

Statistical Competency

What else is required in order for the patient to actively and effectively engage in medical decision making on his own behalf? He must add one more competency—statistical competency—to the linguistic and conceptual competencies he has already acquired.

Statistical competency does not mean any real ability in mathematics or statistics, but rather a basic understanding of how medical probabilities work in principle and how to apply these principles to his individual medical condition.

In the case of high cholesterol, this patient needs to understand that taking a statin significantly reduces the probability that he will have a heart attack or stroke in the future. His physician can attempt to describe the differences between "Absolute Risk Reduction," "Relative Risk Reduction," and "Number Needed to Treat"—and perhaps for some sophisticated patients that may be appropriate. However, for most patients, statistical competency only requires the understanding that if 1,000 patients with a condition similar to his own take a statin every day, compared to another 1,000 who do not, then fewer patients in the group taking the medication (10 or 20 or 30 fewer, depending on the data) will have a heart attack or stroke compared to those not on medication. What is most important is a basic appreciation of the scale of the benefit.

When this patient is now contemplating the potentially serious adverse effects associated with a statin, he must also be able to comprehend the very different scale of probability that the risk represents compared to the benefit. Again, the exact numbers can be accessed or communicated, but what is most important is the relative scale of difference—1 in 10,000, 1 in 100,000, etc. (again depending on the precise data).

This is statistical competency. By understanding the relative differences of benefit and risk as described, our patient can now make an informed evaluation of the risks and benefits of taking his medication every day—and the risks and benefits of not treating his condition.

Our hypothetical patient, thus equipped with linguistic competency (hypercholesteremia = high cholesterol); conceptual competency (cholesterol is manufactured in the liver, the medication described by my physician is designed to work in the liver to reduce the amount of cholesterol manufactured); and statistical competency (the benefit from taking a statin far outweighs the risk of developing a serious side effect from the medication) is in possession of a sufficient body of knowledge to achieve decision making literacy regarding informed consent and empowerment.

What Are the Implications for Decision Making Literacy?

There are several significant implications of this specific expansion of the idea of health literacy:

1. It raises the bar of responsibility for the pharmaceutical marketer, payer, and provider seeking to provide the information, and increases the capacity of the consumer/patient to exercise informed consent and to actively participate in making medical decisions. The added dimension of competency as defined by this new language can specifically guide the creation of content, design, and choice of media channels associated with specific patient-directed programs.

2. It defines measurable communication endpoints with which to measure the efficacy of patient education, CRM, and adherence programs designed to inform the patient and to support their decision-making competencies. These applications can include: new approaches to research methodology and investment to gain initial insight into patient needs, ongoing metrics for patient communication materials and programs, and an expanded approach to patient (and even provider) segmentation.

3. It provides an expanded vision and architecture for the creation of and investment in collaborative programs with healthcare delivery systems and institutions designed to improve and validate increased quality, efficiency, and health outcomes.

Signal and Inspiration for Change

Language matters. It can be the signal of change—and the inspiration and active cause of change. Decision making literacy can be—and should be—both.

Joe Gattuso is EVP and Chief Strategic Officer for Ogilvy CommonHealth's business development group. He can be reached at jgattuso@commonhealth.com