Caregiving Blog: Making Patient Engagement & Education A Reality

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The Importance of Patient Engagement & Education

Patient engagement and education is a weighty subject for healthcare providers. Patient-centered care is a simple concept that is difficult to deliver. Healthcare providers are continuously seeking and evaluating new strategies to implement patient engagement and education tools and technologies.

The needs of patients, healthcare consumers, and family caregivers are simple on the surface. Consumers want to be treated with respect, dignity, and feel that they and their time are valued. The goals of the healthcare industry include a positive patient experience through exceptional customer service, better health results, reduced costs, and better provider experiences.

Why Is Patient Experience Important?

Americans, on average continue to spend much more for healthcare—while getting less care—than people in other developed countries, according to a study by the John Hopkins Bloomberg School of Public Health. (1) This information is not new news. Climbing costs support why hospital systems and other providers are focused on patient engagement, patient experience, and patient education to reduce costs of care.

Why is the cost of care so expensive? There are no easy answers and no easy solutions. An article by Reuters states that health spending may be higher in the U.S. because prices are steeper for drugs, medical devices, and administrative costs of care. (2)

Consumer and Patient Participation is Necessary to Reduce Healthcare Costs

Consumer participation (or lack of) is one component of rising costs. Because health insurance has largely been provided by employers, consumers have been shielded from the costs of health insurance premiums, office visits, medical tests, etc.

It has only been recently that the subject of price and cost transparency of healthcare has arisen. Consumers are now interested in knowing treatment costs in advance, paying bills online, and ways to create payment plans for medical care that stretches beyond the budgets of individuals and families. Many of these concerns are being addressed by healthcare providers.

Barriers to Patient Education

Healthcare has come so far, yet there is a long way to go. Patient engagement is low because the healthcare system is not rewarded for being preventive but emphasizes an acute care approach. A focus on prevention of chronic diseases so that acute illness is time-limited rather than time expanded would result in better quality of life.

The healthcare system understands this terminology. Consumers do not. Patients report concerns with the use of “medical speak,” the inability to understand conversations, medical recommendations, and to make good decisions.

For consumers, patients, and clients, an “acute care approach” means receiving treatment for a severe or life-threatening injury or illness. In simple terms, a condition for which one might be hospitalized.

Hospitalizations, as healthcare professionals and consumers know may represent a traumatic experience for an individual and the family caregiver. Discharges, meaning sending patient home, are happening in rapid sequence. While the patient may be medically stable, the individual and the family caregiver are less likely to understand the short- and long-term impacts of the hospitalization and treatment.

The Impact of Patient Experience on Daily Life

These impacts and the impact on daily life are the snags that result in loved ones returning to the hospital, in failing to manage chronic health issues, in costing the system more. The healthcare system understands what these terms mean—because they mean money and cost. Consumers do not.

For this reason, patients need support to talk about real-life situations that encompass health, well-being, career, and family relationships. Being healthy is not about a single aspect of life but about many aspects of life that are interrelated.

The healthcare system is financially rewarded for providing care and treatment after a diagnosis. As patients and family caregivers experience, significant time and attention are devoted after a heart attack, a stroke, or another life-threatening condition.

Patient education is time-limited and absent. Time constraints of the system, financial support for education, and the barrier of healthcare providers who view patients as non-compliant are some of the reasons that patients do not receive beneficial information.

What Is Patient Engagement?

Patient engagement and education is a fundamental aspect of achieving good health and well-being.  Making information and experiences relevant and relatable is the challenge to achieving patient engagement and to receiving better than average customer service.

Patients rarely view themselves as a patient. Family members helping other family members rarely understand that this “helping” transforms them into the role of a caregiver.

Patient is the term used in the healthcare system for consumers seeking medical care and treatment. In my 20 years of working in the healthcare system, I provided services to many patients who I preferred to call clients.

In my opinion, consumers experience of disempowerment when swept into a healthcare system they feel has great control over their lives. This experience is true especially if social determinants and a lack of confidence are present.

I know, more medical speak. Some social determinants that affect the ability of an individual to have better health include:

  • Education
  • Being employed
  • Not being concerned about job security
  • Having available transportation
  • A lack of understanding of medical conditions
  • A need for written instructions
  • Needing help from a family caregiver
  • A safe home environment
  • Being “literate” in the language of medical providers so that recommendations and information are easily understood
  • Being confident, not fearful, to ask questions
  • Learning to advocate for care

Many consumers in the healthcare system lack some or many of the above determinants. Patients lack the skills to ask questions and to advocate for better care.

Acute Care (Sick Care) Must Become Proactive Healthcare

If the healthcare system treated consumers less like patients and more like clients, could the system change from treating sick people to helping people avoid health issues? If the healthcare system treated patients more like clients who wanted to be proactive about health would the paradigm shift?

If we focused on information to stay healthy, tools to change behaviors resulting in illness to healthy behaviors, and created a support system to help clients feel valued, what might happen in healthcare? I believe this change is possible and that it begins with the consumer.

Healthcare cannot become the responsibility of the healthcare system or doctors. Healthcare must become the responsibility of the individual. How do we make this transformation?

I use the word transformation because this term is easily understood in the healthcare system where Hospital Transformation Programs exist. The word transformation is also familiar to consumers who want to lose weight, create a more fulfilling life, or find work-life balance. To children, transformer toys, much like superheroes who save the world, are well-known.

How Do We Transform Patients into Engaged Patients?

To me, a client is an individual with a choice who deserves respect, dignity and better than average customer service.  Many individuals in the service profession forget that relationships are a 2-way interaction.

How many individuals or healthcare professionals have experienced world-class customer service or even know what this experience means?  If one has not experienced exceptional customer service, how can we as a healthcare professional or an employee, deliver this level of service?

One of my soapbox statements is “only another caregiver understands another caregiver.” This statement is true in many parts of our lives. Insert another word for caregiver and there it is—only another mother, father, doctor, patient, widower.

Compassion, kindness, ot empathy is difficult to convey unless we have truly experienced these feelings ourselves. The problem? Many have not experienced the breadth and depth of life to have this type of relevance in their lives.

This means we have to find another way to find relevance, to identify with the skills and the steps it takes to transform consumers into engaged clients. To transform patients into engaged patients. Finding this path is possible in organizations with leaders who are believers in a commitment to employee training and engagement.

The Price of Disengaged Patients

Patients are viewed as captive customers who may choose another healthcare provider or another insurance plan, but not without great effort. This idea of captivity represents a significant opportunity that—in my opinion–healthcare systems have not recognized nor seized the opportunity at hand.

Let’s talk about why patients are disengaged and then ideas for the healthcare system to take advantage of captive consumers. Few consumers understand the long-term implications of failing to become engaged in health and well-being until it is too late.

This disengagement results in poor health and costs to society. Chronic diseases and health disabilities significantly affect the ability of individuals to work and support their families. Health costs skyrocket due to the advancement of health conditions.

Add to this, society’s inattentiveness to recognize caregiving as a life role and aging as a significant health and life transition – until the costs for treating chronic disease pile up and become burdensome to the healthcare system. Patient engagement and patient education are goals of the healthcare system and must become part of patient responsibility.

Patients Have More Control Than They Realize

Poor patient care, a lack of information, poor communication, or a deficiency of information are common sources of patient complaints about the health-care sector. Patients must realize that the healthcare system is not the provider of everything, that patients and consumers have a responsibility to put forth an equal amount of effort to obtain information and to communicate.

Society does not tell consumers that being healthy takes work. Society wants the easy way out. The simple solutions. Immediate gratification.

The idea of working to be healthy may be viewed as a negative. As too much effort. The majority of consumers live in a bubble of good health. Never expecting a different experience until the shock of illness, disease, or an unexpected accident falls on the doorstep. Few realize that being a caregiver for a spouse or an elderly parent will be a role in life that may last decades.

Patients and Caregivers Will Perform Medical and Nursing Tasks

Daughters and sons helping elderly parents fail to realize that they are in the role of a caregiver. The CARE Act supported by AARP is changing this perception.

The CARE Act requires hospitals in states that have approved this legislation to:

  • Provide loved ones the opportunity to designate a family caregiver.
  • Inform the caregiver when a loved one is to be discharged to another facility or back home.
  • Give the caregiver an explanation and live instruction of the medical tasks to be performed at home

Patient Frustrations About Healthcare Interactions

Years as a care manager serve as a comical but not so comical playbook of things that can and do go wrong when advocating for the care of clients. These things that go wrong become discouraging and frustrating for consumers.

While the healthcare system easily views patients as non-compliant, recognition should also be given to patients who try to get help and are disillusioned by the difficulties of the system.

Professionals working in healthcare and patients and family caregivers experience the following and more:

  • Medical errors happen and result in patient deaths
  • Test results become lost and have to be repeated
  • Referrals to specialists or for tests may be approved, and the patient is never advised until weeks later
  • The shortage of physicians results in an inability for patients to schedule recommended follow-up appointments leaving the patient responsible for repeated phone calls to the doctor’s office. Some patients give up and never schedule the appointment.
  • Time-pressed physicians make changes in a treatment plan without consulting a power of attorney or family member. The health of an elderly parent or loved one declines. The family caregiver is puzzled until he or she learns that the health decline resulted from the action of the physician.
  • Family members are not consulted about the discharge plan of a loved one, from a hospital or nursing home, who is unable to live independently at home.
  • A lack of care coordination results in duplicating tests, medications with negative interactions, prescriptions that are never filled, or missed treatments
  • Medical offices run late. Patients wait for hours in waiting rooms and are not offered the option to reschedule.
  • Hospitals are places for acute care, not places where family members easily obtain information about the care of loved ones
  • Medical appointments are canceled. Patients never advised until they show up at the doctor’s office for the appointment
  • Pre-procedure instructions are not understood by patients who are then refused treatment because they ate, drank, and did not follow preparatory instructions.
  • Medications not in the formulary of the patient are prescribed, resulting in refusals by insurance companies to fill the prescription. Patients struggle to understand or correct this issue, so they give up and don’t pursue having the prescription filled.
  • And the list goes on . . .

Healthcare Worker Burnout

Add the above list of issues to the fact that healthcare workers are exhausted and burned out. This burnout does not bode well for patient care. Family caregivers find themselves in similar situations of burnout, which does not bode well for the care of elderly parents, spouses, or loved ones.

We have a healthcare system and family members caring for loved ones (who do not categorize themselves as caregivers) that feel overwhelmed and underappreciated. What can be done to ease these relationships to improve care and decrease costs?

Engagement and education on all fronts are the solutions. Healthcare workers need as much support, information, and training as family caregivers—if not more. The healthcare system must offer programs to engage workers and manage the burnout that happens.

Solutions for Caregiver Burnout and Patient Education

Think of this. The wait times of captive patients and caregivers could be better served by providing the opportunity for distraction and education. What is the average wait time for a medical appointment? The average time to complete a medical treatment or test? The average time a family member spends at the hospital or waiting for a loved one to return from surgery.

This wait time represents an opportunity for the healthcare system to educate patients and family members. How many waiting rooms have televisions? How many consumers carry cellphones or electronic devices that can access the Internet?

These televisions, these devices are transmitters for education and information that can be created by hospitals, medical offices, treatment centers, and others. Why not have information about high blood pressure and heart disease available for consumers to watch or listen while waiting in a cardiology office?

Why not have information about the hospital or nursing home discharge process presented upon admission to the hospital for the patient and family members to avoid the unpleasant surprised that occur when patients are shocked about being discharged.

Preventative Education Improves the Patient Experience

The list of preventative actions that can be taken to improve the patient experience is endless. Some of these actions are already underway through the availability of electronic medical records, scheduling systems, parking maps, and other clinical type interventions. These systems have made the patient experience more pleasant and easier.

Education and information can have a similar result in addition to helping avoid re-hospitalizations and actions that result in more costs and fine to the healthcare system. Repeating my soapbox statement, “it takes a patient to know what a patient experiences,” “it takes a caregiver to know what a caregiver experiences.”

We wear the Ruby Red slippers. We have the power to make changes. It is up to us as individual consumers and individual healthcare practitioners to be vocal and to take the initiative. We have the ability to improve the patient experience, to engage patients, to become engaged patients, to provide relevant patient education programs not hindered by social determinants and other limitations, and to become the best advocate for ourselves and our loved ones.

Looking For More Help Managing Care for Yourself or Elderly Parents? You’ll Find What You Are Looking For in The Caring Generation® Library in the Section Called Employment & Work Life Balance. 


(1) U.S. Health Care Spending Highest Among Developed Countries. Johns Hopkins Bloomberg School of Public Health. 1/7/2019.

(2) Rapaport, Lisa. U.S. Health Spending Twice Other Countries’ with Worse Results. Reuters Health News. March 13, 2018.

©2019 Pamela D. Wilson, All Rights Reserved

Pamela D. Wilson, MS, BS/BA, CG, CSA is a national caregiving expert, advocate and speaker.  More than 20 years of experience as a direct service provider in the roles of court-appointed guardian, power of attorney, and care manager led to programs supporting family caregivers and aging adults who want to be proactive about health, well-being, and caregiving. Wilson provides education and support for consumers and corporations interested in supporting employees who are working caregivers. To carry out her mission, Wilson partners with companies passionate about connecting with the caregiving marketing through digital and content marketing. Her mission to reach caregivers worldwide is accomplished through social media channels of Facebook, You Tube, Linked In, Instagram, Caregiving TV on Roku, and The Caring Generation® radio on Internet radio. She may be reached at 303-810-1816 or through her website


About Pamela Wilson

PAMELA D. WILSON, MS, BS/BA, NCG, CSA helps caregivers and aging adults solve caregiving problems and manage caregiving needs through online programs, live support groups, and an extensive caregiving library that includes articles, podcasts, videos, and webinars.

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