Wise Patients Really Can Make Medical Decisions

“The numbers in this blog are hard to believe. Why is the medical profession recommending shingles vaccine? It is one thing to say that patients should be their own advocates. But why would medical professionals recommend a vaccine to their patient that has such a paltry risk/benefit outcome? After all, we go to doctors because we presume that they know more about medical conditions, prevention and treatment than we do. If they don’t, what’s the point?”

A wise patient reading my blog on the shingles vaccine made the above comments.

The adjective “wise” has been defined as “able to make good judgments.” Good judgment leads to a good decision. Good decisions are the goal of prudent, discerning and knowledgeable medical care.

Patients are capable of being wise with their medical care. People, if informed about the consequences of a choice, become astutely aware of the tangible differences between compared tests or treatment plans. They can then balance added benefits and harms of one plan over another. This process of becoming aware of differences in outcomes for alternative plans, and then making their own decisions based on their preferences for trade-offs, leads to wise choices.

What Does It Mean to Be an “Informed” Patient?

Note that I say “informed about the consequences of a choice.” Informed medical decision-making has some crucial requirements:

• First, a trade-off; one plan must be better in terms of outcomes of the disease condition, but that plan must also be worse in terms of side effects of the treatment. Hence, a balancing must be done.
• Second, an informed choice requires evidence from randomized trials showing that there is actually an added benefit and harm of one plan versus another. (If there is no added benefit or if there is an overarching public health decision to be made—for example, childhood vaccination—there is no trade-off, so decision-making is perfunctory). The bulk of medical decisions require an evidenced-based trade-off, and patients will need help to find and assimilate the evidence.

Only Patients Can Determine Value in Medical Decisions

I know the writer above is wise because that individual is making an informed decision regarding the shingles vaccine, balancing the trade-offs from a personal perspective. The goal of medical care, after all, is not to promote the same decisions for everyone, but, rather, to encourage variable decisions based on each person’s personal assessment of the balance between benefit and harm.

Patients’ ability to discern the meaning of differences in outcomes of alternative options for care from their unique perspectives allow them to be the wisest decision makers, more so than any statistician, researcher, epidemiologist, journal editor, guideline producer, insurance agent, politician or physician. Are these medical people wise? For themselves, yes, but for others, no, in my view. They are, certainly , purveyors of medical facts. But they are not able to perceive someone else’s preferences for trade-offs, an essential component of most medical decisions.

Barriers to wise choices abound, however, despite best intentions. Some barriers rest with the patient, and some with the business of medicine. Some barriers on the patient side include lack of understanding or emotional incapacity due to fear and anxiety, perhaps, or family members and friends bearing incorrect information. On the medical side, misleading advertising, clinicians and researchers with conflicts of interest due to financial arrangements with industry or poorly produced, irrelevant studies in the medical literature may rebuff wise choices.

In a sense, a patient is the only one who has the correct incentive system in medical decision-making. Patients wisely determine the value of information and then use their own outcome preferences to balance and choose. They, after all, are the ones who face the consequences of their choices. Those who hold the patient’s best interest above all other factors should ensure that patients are properly informed and guided through the decision-making process. The third, crucial component of informed, high quality medical decision-making is that competent patients should and can make their own choices rather than have choices made for them.

Informed Patient Decisions Rest on Data from High Quality, Randomized Trials

When patients must make medical decisions, they need to know what options for care are available to them, and those options can only be revealed by high-quality, randomized, controlled trials that are relevant to the individual patient. When there is not adequate data or research to fully address the benefit/harm trade-off, physicians must make this clear to patients.

Patients may find it helpful to use a decision aid such as a table or chart to understand and compare the benefits and harms of each course of action. Patients and their physicians should work in partnership to review appropriate data, discuss trade-offs and arrive at the patient’s best decision.

Physicians Should Guide Patients in Understanding Trial Data—but They Need Help

Physicians complain that they do not have the time for coaching patients through a medical decision-making process, let alone the time for reading and curating the latest research results. We know that physician burnout is a real problem, and that expecting physicians to be the data-aggregators will meet with pushback if implemented.

Every provider organization has the responsibility to facilitate the organization of a decision-making process to enable patients to be wise and make informed medical decisions. Providers need to ask these questions:

• Where is the accountability best located for organizing a patient’s value-based medical decision-making process?
• Who should gather clinical trial information and evaluate its quality?
• Who should develop tables or other patient tools to evaluate their options?
• How should physicians be coached in the most fair and effective way to present data to patients?
• How do we document the options as well as the patient’s choices, to make it easy for clinicians?

To facilitate the collaboration of wise patients with their physicians, we must acknowledge the realities of physicians in practice and establish a system of support for good medical decision-making supported by data. We can’t push productivity and cost performance while expecting physicians to tabulate options for their patients. This is where the organization must step in to help. Specialty departments, practices, an overarching medical group, or even an ACO could all be appropriately involved in creating a structure that will work for physicians and their patients.

Provider Accountability for Presenting Options Is a Must, but the Process Should Vary

The scope of potential decision points is vast, and many will argue that it is impractical to support all medical decisions and every patient visit with lists of research, options and benefits/harms. But determining which decisions must go through a process of reviewing options is not easy or clean-cut. Dozens of decisions might be made in a single patient visit—pursuit (or not) of screenings, testing, vaccinations, changes in existing treatment plans. All of these should have data supporting the efficacy as well as risks.

It may be useful to prioritize decisions that require time, involve more complex processes for the patient and have life-altering implications. A decision to get a shingles vaccination does not involve the same scope of analysis as a hip replacement or cancer therapy. Physicians should be able to present information to patients for frequently presented health care issues along with known benefits and harms, and without undue bureaucracy or meddling—but with the involvement of the organization in establish consensus on the options and clinical research data.

Entrusting physicians to independently provide patients with information for their decisions also rests on the expectation that physicians and their organizations review research and collaboratively set a standard of practice on the most recent results and research-driven therapies. This is a big undertaking that must be done by professionals who can review and validate research, because physicians themselves will not be able to take on this task.

Presenting data to patients will also require supporting a change in how physicians see their roles regarding guidance and education. Teaching them to educate patients on options and with data—without patients needing to ask—will be a significant shift.

Only a limited, defined number of decisions require an organizational process and standardized patient tools. These decisions should be of importance to both the patient and the larger organization that will need to shepherd this process along. The organization needs to have the authority and rationale to adequately engage the physicians and patients.

Organizations that are at financial risk or required to use cost measures (as part of MIPS) will have the impetus to centrally create and develop materials for physicians and patients to use for medical decision-making. The organization needs to curate high-quality, relevant medical research with the help of research-knowledgeable clinicians and scientists.

Helping facilitate patients’ ability to make wise choices is not “pie-in-the-sky” thinking. It is a critical step in the movement toward Value-Based Health Care and engagement of patients in medical choices. It is also a necessary correction from traditional and paternalistic medical care, incorporating health care consumers’ growing desire to balance their preferences, costs and benefits of treatment. As patients become more involved in the process of making medical decisions, we will also need continuous assessment of approaches to patient decision-making to identify the most efficacious processes and their impact on both patient-physician relationships and health outcomes.

Founded as ICLOPS in 2002, Roji Health Intelligence guides health care systems, providers and patients on the path to better health through Solutions that help providers improve their value and succeed in Risk. Roji Health Intelligence is a CMS Qualified Clinical Data Registry.

Image: Lubo Minar