Patients need education about their role in care

According to the recent Wall Street Journal article patients are encouraged to engage in care, keep track of their medical data, seek preventive care, and to manage their conditions. Studies show that if patients are actively involved in care and partner with providers, that they experience better health outcomes and lower costs.

But for patients to be active participants in care they must acquire knowledge about their diagnoses and treatment plans, be able to communicate important health information to providers, and understand how to partner with providers and share in decision-making. This requires a behavior change, especially if patients are new to the health care system. In addition, for patients to be actively involved in care they must prepare for medical encounters, feel comfortable asking questions to become better informed, and take some ownership of their medical information. No small task for any patient, whether experienced or not in the health care system.

The Institute of Medicine report, “Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement,” highly recommends that patients participate in care and focuses on clinicians to activate patients and their families. There are incentives for providers who show meaningful use of technology, including engaging patients and families in decision making and providing them with their health records and clinical summaries.

There’s only so much providers can do: They are dealing with patient overload and are short on time. Can physicians shoulder the responsibility of giving patients and their families/caregivers the equivalent of a college course on how to become active participants in care and navigating our health care system? Are all physicians ready to model and teach patient engagement at the time of service?

When seeing a physician or nurse, many patients are not feeling well and might be in medical offices or hospital rooms that exacerbate stress. Is it fair to educate patients during a medical encounter about how to access their medical records, how to form collaborative relationships with providers and how to be proactive patients instead of passive recipients of care?

For example, take a sixty-five year-old man who sees his physician, having put off a visit because he dislikes going to the doctor. He’s had abdominal pain and isn’t feeling well, maybe even anxious in the doctor’s office. At the time he’s given a diagnosis and possible treatment plan, he is also provided with information on how to be an active participant in his health care, including how to access his medical records, how to partner with his physician, and more. Is this realistic?

Patients need education about their role in care at a time when they are not seeing providers for diagnoses and treatment plans. This information should be presented in required courses in high schools and colleges, through government-sponsored seminars in a variety of modes so everyone has access to the information. The information should be taught via live seminars to those who need it most, including low-income and rural populations, and to those who have recently gained access to health care.

Patients need step-by-step directions at the ground level in their primary language, as do their advocates and caregivers.

Health policy change, meaningful use, and information tools through providers and advocacy organizations, are absolutely necessary. But until patients and caregivers are educated directly by sources separate from their medical providers, I believe it’s just too much to ask of many patients to integrate the information successfully.

According to The National Patient Safety Foundation, most U.S. patients are still relatively uninformed and are passive recipients of health care services, lacking the confidence and skills necessary to engage as active participants in care.

We must expand and deepen the outreach. We need to teach patients in their own environments how to engage in care, when they are not dealing with symptoms or in search of a diagnosis or treatment. We must meet patients where they are and provide ground-up education so they can make the most of it when they do see providers, deal with health insurance, manage medications and health conditions.

Perhaps hospitals and health care organizations could reach out to local community groups and retail drugstores to offer free seminars to the patient population. This would not only provide education in a comfortable environment for patients and families, but could potentially expand the organization’s customer base.

I see this as an unmet need that must be addressed. Everyone, on all sides of the table, is doing their best to change how health care is delivered and received. If standardized patient education were conveyed to the masses on neutral ground, the goal of increased patient empowerment and engagement would be in reach.

Martine Ehrenclou is a patient advocate.  She is the author of Critical Conditions: The Essential Hospital Guide to Get Your Loved One Out Alive and The Take-Charge Patient.

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