Making Patient Engagement and Education A Reality

The Importance of Patient Engagement & Education

Patient engagement and education are critical to improving healthcare outcomes for consumers; however, implementation can be challenging for healthcare systems. Healthcare providers are reimbursed for treating diseases, not for disease prevention or education.

Time constraints and the competing priorities of doctors and health insurance companies can conflict between dedicating time to patient care and chronic disease-focused education. While caregiver support programs benefit patients and family members, they are not revenue-generating efforts for health systems. Caregivers’ efforts keep elderly parents and spouses from returning to emergency rooms. Without family caregivers, many elderly would be unable to continue to live at home.

While CMS (Centers for Medicare and Medicaid) continues to introduce new programs to assess for social determinants of health (SDOH) and support Alzheimer’s caregivers, these programs may continue to place more work on already time-pressured and burdened family members. Implementation by healthcare systems can require technology updates and additional staff time.

Considering the complexities of patient engagement and education, the bottom line is that individuals want to be treated with respect and dignity and feel better as a result of their interactions with doctors.

Technology Can Support Patient Care

The goals of the healthcare industry include a positive patient experience through exceptional customer service, better health results, reduced costs, and better provider experiences. Healthcare providers continuously seek and evaluate new strategies to implement patient engagement and education tools and technologies.

Healthcare technology companies have a wide focus, including products supporting home health monitoring and providing virtual care. Portable EKG monitors that pair with smartphones are one example.

Efforts to support data interoperability across health information exchanges and health record systems remain a high priority. Increasing patient and caregiver access to medical records can improve health outcomes for organizations supporting patient engagement and education.

Separately, platforms that facilitate patient scheduling, virtual appointments and reminders, billing, completing surveys, and other tasks continue to increase in use. The challenge for patients can be accessing the Internet, having a computer, and becoming familiar with navigating patient portals.

Skyrocketing Health Care Costs

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, which may have the ability to improve outcomes and manage care costs.

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)

Access to Care

A lack of access to care or knowledge about navigating care can contribute to rising costs. Because health insurance has largely been provided by employers, consumers have been shielded from the costs of health insurance premiums.

Persons over age 65 accessing original Medicare or Medicare Advantage Plans may find getting the care they need challenging due to co-pays, prescription drug costs, a lack of providers, and other factors.

Age and health habits impact being diagnosed with chronic diseases. Patients cannot make informed choices without discussions about the effects and consequences of health diagnosis.

Fear may exist about receiving a diagnosis or related medical costs. Patients may delay medical appointments if they don’t have a trusted relationship with a primary care physician.

Healthcare systems are beginning to address price and cost transparency. Individuals checking in for treatment or hospital procedures may be called before appointments with news about deductibles or co-pays. If the costs are unaffordable, they may not follow through with care, be deemed a “non-compliant” patient, and experience worsening health.

Healthcare Rules and Regulations

Patients and caregivers are good at focusing on day-to-day activities and may be confused when involved with healthcare rules and regulations.

Educating Medicare beneficiaries about care coordination benefits can help them manage chronic diseases more easily and increase patient engagement and interest in education.

Providers who suggest annual wellness and advance care planning visits can build positive physician-patient relationships that encourage patients to follow through on physician recommendations.

Healthcare terminology can also be a barrier. Doctors, nurses, and others often use acronyms and terms that patients do not understand.

Other gaps include a lack of education about the place of treatment. For example, patients and caregivers might not understand that hospitals only treat acute situations, not all health issues. This gap often esults in using emergency rooms for conditions that a primary care physician can treat.

The difference between hospital observation status and admission is puzzling for many family caregivers who are attempting to help their older family members manage their care.

Hospitalizations can be traumatic experiences for patients and their family caregivers. If their care needs are addressed, patients are sent home quickly. While the patient may be medically stable, an elderly parent may need more care than the caregiver can provide, which poses a risk for re-hospitalization.

Because of caregiver constraints like having to work, the importance of follow-up care after the hospitalization may be brushed off as unimportant.

Missed Care

Elderly parents may be so distracted or worried about their health conditions that they forget to share physician recommendations with their caregivers after being released from the hospital. As a result, the caregivers cannot help parents manage chronic health issues or schedule follow-up appointments, resulting in missed care.

Patients and their caregivers benefit from education and support to discuss care needs and wishes that can be offered during annual wellness visits or check-ups. For example, patients may be hesitant to take medications with known side effects if physicians do not offer to change the medication if the patient reports disabling side effects.

A diagnostic test recommendation may be ignored by a patient unless the physician provides a detailed explanation of why the test is necessary and gains agreement to proceed. These conversations can take time not always provided in a 15-minute medical appointment. 

Social Determinants of Health

Patients rarely view themselves as patients, and family members who help other family members rarely understand that this “helping” transforms them into caregivers.

However caregivers and patients can experience trepidation when swept into a healthcare system believed to have great control over the care they receive when they are trying to balance so many other aspects of life.

Social determinants of health, such as low health or financial literacy or income constraints, can negatively impact patient care. These include: 

• Education
• Employment
• Concerns about job security
• Available transportation
• Lack of understanding of medical conditions
• 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 and not fearful of asking questions
• The ability to advocate for care

Being affected by one or more of these social determinants of health can have unintended impacts on patients and their caregivers if they are not discussed with healthcare providers.

Good Health is an Illusion

Few patients understand the long-term implications of failing to become engaged in health and well-being until it is too late and health conditions have advanced. 

Chronic diseases and health disabilities significantly affect individuals’ ability to work and support their families. The impacts of poor health care are rarely discussed in families until an unexpected situation occurs.

Poor patient care, a lack of information, poor communication, or a deficiency of information are common sources of patient complaints about the healthcare sector. Physicians can help patients realize they are equally responsible for seeking information, following up, and communicating.

Being healthy takes work. Many individuals live in a bubble of good health, never expecting a different experience until the shock of illness, disease, or an unexpected accident hits them where they live. Few realize that caring for a spouse or an elderly parent will be a role in life that may last decades and can be all-consuming.

Patients and Caregivers Will Perform Medical and Nursing Tasks

Daughters and sons helping elderly parents may not realize they are caregivers until they begin performing medical tasks. The CARE Act 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 on the medical tasks to be performed at home.

Patient Frustrations About Healthcare Interactions

When working with healthcare providers, things that can and do go wrong can be discouraging and frustrating for patients and caregivers.

While doctors can see patients as non-compliant, recognition should also be given to patients who try to get help and are disillusioned by system difficulties:

• Medical errors that happen and result in patient deaths
• Lost test results that must be repeated. Test results not reported to patients in a timely manner that identify health risks.
• Referrals to specialists or for tests that are pre-authorized; however, the patient is never advised until weeks later or not at all.
• The shortage of physicians results in patients’ inability to schedule recommended follow-up appointments, leaving them responsible for repeated phone calls to the doctor’s office. Some patients give up and never schedule an 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 physician’s action.
• 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 until the request comes to pick up a parent from the hospital.
• A lack of care coordination results in duplicate tests, medications with negative interactions, never-filled prescriptions, and missed treatments.
• Medical offices run late. Patients wait 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 are never advised until they arrive at the doctor’s office for the appointment.
• Pre-procedure instructions are not provided to or explained to patients who are then refused care on the day of treatment because they ate, drank, and did not follow preparatory instructions.
• Medications not in the patient’s formulary are prescribed, resulting in insurance companies refusing 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 . . .

Solutions for Caregiver Burnout and Patient Education

Imagine this scenario to support patient engagement and education. Wait times of captive patients and caregivers can become opportunities for chronic disease 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 cell phones or electronic devices that can access the Internet?

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

Why not present information about the hospital or nursing home discharge process upon admission to the hospital for the patient and family members to avoid the unpleasant surprises that occur when discharge planners call family members to pick up their loved ones? 

Wait Times Present Opportunities for Patient Engagement and Education

The list of preventative actions that can be taken to improve patient engagement and education 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.

Opportunities to engage and support patients and their caregivers are unlimited, especially when attending routine medical appointments and treatments or receiving in-hospital care. Capitalizing on wait times can present teachable moments for patient education and engagement.

Looking For More Help Managing Care for Yourself or Elderly Parents? Visit Pamela’s How I Help Page

Sources:

(1) U.S. Health Care Spending Highest Among Developed Countries. Johns Hopkins Bloomberg School of Public Health. 1/7/2019. https://www.jhsph.edu/news/news-releases/2019/us-health-care-spending-highest-among-developed-countries.html

(2) Rapaport, Lisa. U.S. Health Spending Twice Other Countries’ with Worse Results. Reuters Health News. March 13, 2018.  https://www.reuters.com/article/us-health-spending/u-s-health-spending-twice-other-countries-with-worse-results-idUSKCN1GP2YN

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