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The Patient Journey: A Conceptual Framework for Engaging Patients

Dr. Julibeth Lauren, PhD, APRN, ACNS-BC, vice president and editor-in-chief, Elsevier Patient Engagement, November 30, 2017

Healthcare systems are facing a rapidly growing and almost overwhelming list of outcome measures to meet regulatory, accreditation, and compliance standards.

Dr. Julibeth Lauren

Current outcome measures, such as pressure injury prevention, surgical complications, and colonoscopy follow-up screening, include elements of patient “compliance” for the healthcare system and provider to be successful. Hospitals struggle with reducing unplanned 30-day readmissions for conditions such as heart failure, pneumonia, and hip/knee replacement when challenged by external variables. These variables include patient lifestyle, access to transportation to rehab or follow-up appointments, and finances to cover prescribed medication costs. In parallel, healthcare systems are seeing more financial incentives to ensure that patients comply with treatment plans post-discharge in an effort to meet outcome standards.[1]

Shared decision-making and early patient engagement are critical

Additional motivators exist for healthcare providers to engage in a shared decision-making (SDM) model. The Centers for Medicare & Medicaid Services and the Agency for Healthcare Research and Quality (AHRQ)[2] both promote the adoption of an SDM model throughout healthcare. This is not a new concept; it is formalizing the structure of effective provider-patient communication. Evidence shows that, in absence of a formal structure, healthcare providers find it difficult to integrate SDM into their routine workflows.

There is also evidence of the importance of engaging patients early in their healthcare journey to identify values and preferences, as this can increase compliance with the plan of care and treatment.[3] Patient activation occurs at the beginning of the patient’s journey. A recent University of Oregon study showed higher-activated patients experienced several benefits compared to patients who were less activated.[4]

Higher-activated patients were:

  • More than nine times more likely to feel their treatment plans reflected their values
  • Four and a half times more likely to cope with side effects
  • Three times more likely to initiate a healthier diet                       

While there is significant evidence in the literature to promote an SDM model for patients, the challenge is how and when to provide patients with the right information throughout their journey. How can you help patients partner with their healthcare provider and team to make informed decisions about their care? A recent study published by the American College of Cardiology concluded high patient awareness is not enough to engage patients in self-care. A stronger model is necessary to help them understand how self-monitoring translates into self-care and management.[5]

Delivering education when the patient is ready to learn

Engaging a patient early in the care process with information about testing, diagnosis, treatment, recovery, aftercare, financial considerations, and self-care may present the patient with an extremely overwhelming amount of information that is likely to hit the recycle bin. Instead, Elsevier leverages the patient journey, delivering education when a person is most ready to learn about their phase in the journey. There are many publications that describe the patient journey for specific disease conditions and how the patient moves throughout the continuum of care after entering the healthcare system; however, there is very little written about the journey from the patient’s perspective. A provider may see the patient once symptoms occur or a routine annual test uncovers an abnormal lab value, but after a diagnosis is confirmed, the patient will move somewhat linearly through the journey from diagnosis to treatment, then to recovery or management.

Elsevier’s conceptual framework for developing patient education content is a somewhat fluid model. We address the patient’s need for education at each of the following phases of the care journey:

  • Prevention and wellness
  • Discovery
  • Testing
  • Diagnosis
  • Treatment
  • Recovery or management and self-care

In the prevention and wellness phase, a patient may have a sibling diagnosed with diabetes and wonder how to prevent or reduce the risk of developing the condition. The patient may become symptomatic and leverage web-based searches during the discovery phase to try to understand the meaning of those symptoms. The patient’s provider may run tests and physical assessments to diagnose a medical condition, which may require treatment. Once the provider and patient have a clear plan of care and treatment, there may be a need to identify self-care, management, or recovery from the treatment.

“It’s not about patient compliance; it’s about building a provider-patient relationship and partnership in the development of a care and treatment plan.” —Dr. Julibeth Lauren, PhD, APRN, ACNS-BC, vice president and editor-in-chief, Elsevier Patient Engagement

Prevention and wellness also run throughout the patient’s journey as well as before any diagnosis of an acute or chronic medical condition. Further, if there is an exacerbation of a medical condition, such as COPD or heart failure, this requires additional testing with which the patient must become familiar; sometimes the testing will lead to a new diagnosis, such as ketoacidosis in a diabetic patient. At each phase of the patient journey, new information, learning, and engagement opportunities are evident.

It is critical to deliver the right information at the right time: namely, when the patient is ready to learn about each phase of the disease or condition. Delivering all of the information the patient needs at the end of the acute hospital stay is less than optimal for effective adult learning. As discharge approaches, the patient is preoccupied with getting home from the hospital, making sure his or her pets are taken care of, and wondering how much of the stay will be covered by insurance; asking the patient to also focus on managing insulin for the first time is a tall order. Leveraging tools like the patient portal, outpatient educators, and bridge clinics to deliver the right information at the right time—when the patient is ready to learn—will optimize patient learning.

Engaging the patient early in the diagnosis, delivering the right information at the right time throughout the patient’s journey, and engaging in shared decision-making, particularly with care and treatment options, is a strong approach to ensure that patients increase their activation and ultimately achieve better outcomes.


[1] Medicare.gov Hospital Compare

[2] AHRQ.gov – SHARE Approach: A Model for Shared Decision-Making Fact Sheet

[3] CMS.gov Beneficiary Engagement and Incentives Models: Shared Decision-Making Model

[4] Patient Education and Counseling, 100(7), 1276–1279

[5] Journal of the American College of Cardiology, 69(11)

Dr. Julibeth Lauren, PhD, APRN, ACNS-BC, vice president and editor-in-chief, Elsevier Patient Engagement

Dr. Julibeth Lauren, PhD, APRN, ACNS-BC, vice president and editor-in-chief, Elsevier Patient Engagement

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