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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  • John C. Key MD

    I remain unpersuaded about how “engaged” the average chronic patient can become in their health care. The biggies–diabetes and hypertension, are very easy to track but it takes a lot of effort as well as time, and a great many patients won’t invest it. In my experience it takes a lot a preaching, a lot of teaching, a lot of repetition to convinced the patient of importance. Just as in religion, the most zealous early converts will later fall away, and must be evangelized again. Patient advocates, bean counters, payors and administrators seem to think that this is a lot easier than it is.

    • guest

      Not only that, they expect that all of the work involved in patient education should magically be done, free of charge…perhaps by leprechauns?

      • Kristy Sokoloski

        The reason that so many involved patient education think that it should be done free of charge is because that they know that a huge number of the patient population can’t afford to pay for such education. That’s regardless of what the reason is for why so many can’t pay for such education.

        • rbthe4th2

          Googling is free. If you have a medical library near you, that’s another no excuse.

          • JW

            Not all patients can actually get to a medical library (even if there is one nearby, they may be too sick to go places). I would have liked to have classes offered during the time I was well enough to be in school.

          • rbthe4th2

            That’s why I said “if”. :)

        • Martine Ehrenclou

          Kristy, exactly. Great point.

      • rbthe4th2

        Yes free of charge done by the *patient*. I spend a lot of time on my condition. I present findings. I’ve actually had a doctor give me kudos on it AND another one who I’m sure was NOT happy because I didn’t ask about my bloodwork results. When he told me, I said oh yeah I know and gave him my findings.

        Sorry I believe that people should get credible sources and do a lot of education. I believe medical professionals do some, be a resource, and give places for people to look up but I dont look to them to know everything and for the patient to take an active and reliable part in their care.

  • rbthe4th2

    One item not mentioned: reviewing medical databases and medical literature. Some people could benefit from this. A “mini medical school” held by universities would be great. I’ve seen some of them online.

    • Martine Ehrenclou

      Nice idea.

  • SteveCaley

    To pay devil’s advocate – should we compel patients to have this level of involvement using carrot-and-stick methods, or is that intrusion on to their choice in how involved they wish to be in their healthcare?

  • Edward Leigh, MA

    You describe many excellent points. Patients do need to play a more active role
    in their care. In working with patients, I find it important to understand
    family dynamics. For example, the patient
    may have little interest in learning about their medical issues. However, the
    spouse or adult child may be the one running the show. I also find the approach
    is important. Scare tactics can be a deterrent (“You better learn about this …)
    However, emotionally connecting can be successful (“I want you to feel better …
    let talk about this helpful brochure and website …). Thank you again for the excellent
    article. Best to you.

    • Martine Ehrenclou

      Edward, thank you so much.
      Great point about family dynamics and that a loved one might be more invested in the patient’s care. Agreed, that scare tactics don’t work and that it is the relationship between provider and patient that lays the groundwork for receptiveness on the part of the patient/family.
      Best to you as well!

  • SuzanShinazyRN

    I agree with the author, Martine Ehrenclou, we need more education, and in fact, we need a culture change. This would start in the school systems, as early as kindergarten. Each grade level can be taught an increasing level until high school graduates know CPR, first aid, home caretaking abilities, how to navigate the system, informed consent and patient rights. Students must be exposed to the industry and told of what their responsibility is as far as taking care of themselves, their families, and how to make the life or death situations they will most likely encounter at some time in their lives.

    • Trish Browning

      Seriously??? Kids can’t read, write, or do math, there is no recess, schools are feeding kids or they go home hungry to barely-functioning home situations with one (sometimes more) overwhelmed adults….and teachers are paid peanuts and threatened with their jobs over test scores and you think THIS has room in the ciriculum???

      • SuzanShinazyRN

        I seriously do. Do you suggest we give up? In Maslow’s Hierarchy of needs, physiological needs come first. Good health and the quality of life good health brings means everything. Our country is going broke over medical costs. It is the largest cause of bankruptcy in the U.S. It is the largest expense most of us will ever incur over the course of our life time.

    • Martine Ehrenclou

      Suzan, I love what you wrote about starting patient education in schools and the list of necessary topics.

  • Martine Ehrenclou

    James, thank you, glad you appreciate it. Great point about engaging caregivers. And yes, it will take a village.

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