With the increased focus on patient engagement to improve outcomes, we as clinicians must think hard about the efficacy of an important step in patient engagement: education. As the first step in following a care plan, patient education must evolve to be customizable, based on evidence, interactive, and accessible on demand when patients or caregivers are best able to absorb the information.

Too often today, there is a disconnect between patient education and evidence-based care plans, as well as a patient’s ability to independently and easily access care plans and education. This creates breakpoints in the patient engagement journey and can hamper true patient engagement, patient experience/satisfaction, and ultimately, clinical outcomes.


Evolving From the Status Quo

Consider this scenario: Mom and her 6-year-old son, Adam, were admitted to the hospital last night after Adam had nonstop vomiting. This morning, Adam is finally sleeping and comfortable. But Mom is reeling from the news that her son has been diagnosed with juvenile diabetes. The nurse tries to spend some time to explain what this new diagnosis means. But the nurse’s primary focus is on stabilizing Adam’s blood sugar and monitoring his vital signs. Mom is still in panic mode, too tired and scared to absorb and understand all of what is being said. After a nap, Mom finally has some down time and is anxious to read more about juvenile diabetes.


The Status Quo

Mom, not wanting to bother the nurse, pulls out her phone and googles “diabetes”. From Wikipedia, she learns that “There is no known way to prevent type 1 diabetes. Treatment with insulin is required for survival. Insulin therapy is usually given by injection just under the skin. Untreated, diabetes can cause many complications. Complications of relatively rapid onset include diabetic ketoacidosis and nonketotic hyperosmolar coma. Long-term complications include heart disease, stroke, kidney failure, foot ulcers and damage to the eyes. Furthermore, complications may arise from low blood sugar caused by excessive dosing of insulin.”

After reading this litany of worst-case scenarios, Mom begins to cry hysterically.


A Better Way

Mom pulls out the tablet provided by the nurse the night before. She remembers how to access her son’s chart and looks through the attached library of educational materials, including books, fact sheets, and videos. The night before, when the nurse created a care plan for Adam, he had selected appropriate evidence-based education to decrease the risk of diabetic ketal acidosis (DKA), new ways that insulin can be delivered efficiently, the benefit of community resources, and the best ways to monitor blood sugar.

Mom starts watching the videos and reading through the material, and leaves responses like “I understand this” or “I have questions.” Mom, although still scared, is feeling armed with knowledge to help get through this. This new feeling of empowerment sets her up to be a valuable advocate for her son in his care journey.

The nurse sees that Mom does have some questions when he is charting on Adam. The nurse goes into the room to reinforce what Mom has been reading and to follow-up on the areas Mom has questioned. The nurse also makes sure that Mom and Adam have access to all the appropriate education at home through their patient portal. This will allow them to review the materials at any time, since they are unlikely to remember everything they learned at the hospital.


A Smoother Patient Journey

In the second scenario, Mom can access the information and resources she needs to help her son manage his newly diagnosed diabetes at a time and place that is right for her. She can ask questions and give feedback on which parts of the education make sense and which parts are confusing. This feedback will help clinicians better select the most appropriate and relevant resources in the future. The materials are chosen based both on the nurse’s experience and the evidence that shows that these materials are effective in reducing complications.

These videos and reading materials can be printed or accessed anywhere via the internet, whether at the hospital bedside or at home after discharge when Mom has more time to research how to keep her son safe. The nurse launches this comprehensive education program seamlessly when initialing the selected evidence-based care plan, saving Mom the time, and potential errors, of choosing and compiling the education materials herself.

Meanwhile in the first scenario, the patient and family must wait until the nurse separately logs on to the education library, using his personal experience–not based on evidence across diabetes studies–to select which education may be helpful. The nurse then prints out the materials, and when he has time to return to Adam’s room, hands them to Mom (who remains overwhelmed in the midst of her son’s health crisis). These packets of information may or may not get delivered until the day the patient is discharged and might not even make it home in the shuffle of paperwork.


What’s Next

By integrating evidence-based patient education into the care plan, we can ensure that patients and their families can take action as soon as they are ready to better understand their condition. Additionally, some hospitals are experimenting with giving patients and families access to provider notes and including them in the development of the plan of care.

What goals does Mom have for Adam and herself for today? What goals does she have for being able to feel like she can safely care for Adam at home and have the appropriate resources? Adam’s Mom now has the power to independently access the plan of care to understand what interventions she and Adam can implement to help achieve their goals. She can also make sure there are no errors in Adam’s chart. This is a significant step forward from a patient safety perspective, ensuring the accuracy of the chart and preventing avoidable harm. This seems like a no-brainer, but unfortunately, current electronic health records (EHRs) do not easily allow this functionality.

The medical community has a long way to go to build a true “two-way street” when it comes to patient education, engagement, and care planning. But the beginning of this transformation is underway. We can start with evidence-based patient education that is integrated seamlessly into the EHR and the care plan. This is an important first step toward a customized journey for patients with newly diagnosed chronic conditions.

Ideally, in the future, healthcare crises will more quickly become actionable events for patients and their families. They will have appropriate, easily accessible evidence-based materials as they seek to understand the new condition and how best to manage it. This education will serve them well as they establish goals through a care plan and develop tactics for meeting those goals. In this new world, patients will not only be able to independently access proven education materials, but they will also be empowered to actively contribute to their medical record.