Over the past decade, health care organizations and providers have increasingly focused on patient engagement as a pathway to improve outcomes and reduce health care costs. This focus was based on studies in which patients who participated in their health care demonstrated positive health behaviors, enjoyed better health status, and had lower acute care use.1,2 Actions to advance patient and family engagement have occurred at both the individual patient level (eg, providing services to support patient self-management) and the organization level (eg, assembling patient-family advisory councils that take part in organizational planning).3
The COVID-19 pandemic has posed enormous challenges to health care organizations and providers. Efforts continue nationwide to boost capacity for acute and intensive care services, while observing stringent infection prevention policies to ensure the safety of all patients, health care providers, and visitors. Toward that end, elective hospital admissions and procedures have temporarily ceased, a family member's ability to stay with his or her loved one in the hospital has been severely restricted, and all operational efforts have focused on pandemic response. As we adjust to the current reality, the overriding priority is to secure capacity for delivering safe and compassionate medical care to everyone who needs it. Another area that requires our concurrent attention is how to maintain efforts and bolster capacity to successfully engage patients and families during this time.
WHY FOCUS ON PATIENT AND FAMILY ENGAGEMENT AND HOW HEALTH CARE PROVIDERS CAN HELP
The following are 3 reasons why such engagement is an essential component of a successful response to the COVID-19 pandemic:
- Health care providers are the most trusted information source. Amid the confusion of an unprecedented pandemic, patients and families are constantly looking for reliable information and guidance. The Internet and media sources are flooded with rapidly changing information that often relays conflicting messages. Patients and families need information from sources they trust and from providers who are considering their health status and individual risk factors. Furthermore, despite the need for fast-paced repeated communications, materials are rarely adapted to reach a broader audience of readers at different literacy levels. This communication stream is leaving behind low literacy patients who are often at higher risk for having underlying conditions and subsequent complications from COVID-19. To address this, it is critical to assess what patients and families already know and use plain language when sharing information and recommendations. A useful resource for plain language is the Centers for Disease Control and Prevention Plain Language Thesaurus for Health Communications, which was developed on the basis of efforts to prepare for a future influenza pandemic.4 Other approaches to improve communication include encouraging patients and families to ask questions and using “teach back” to ensure understanding of shared information.5
- Patient adherence to self-isolation measures is key to reducing the surge in demand for acute care services. An area of paramount importance during the COVID-19 pandemic is self-isolation of patients with suspected or confirmed infection.6,7 Health care providers have an important role in reinforcing the importance of self-isolation to patients. Although providers usually counsel patients on self-care behaviors to help with their health problems, in a public health emergency, they must also counsel patients on behaviors to protect the health of the public. Sometimes this may seem at odds with a patient's needs and interests. For example, self-isolation measures can negatively affect a patient's life and ability to meet his or her needs independent of others, despite such measures being beneficial to family members and the population at large. Health care providers need to explain why and how to self-isolate in a manner that considers the constraints and living circumstances of the patient. What currently complicates this matter further is a dearth in testing for COVID-19. Health care providers often have to make a presumptive diagnosis, based on clinical presentation alone, and ask patients whom they suspect may have the infection to self-isolate and ask their family members to self-quarantine. Consistent efforts to clearly explain the reasons, answer any questions, and problem solve any barriers with patients will increase the chances of adherence to these recommendations and help prevent infection transmission to others.
- Family caregivers have an increasingly important and challenging role. In this pandemic, the role of family caregivers is more important than ever. Most hospitalized patients with COVID-19 are older adults with multiple underlying conditions.8 Oftentimes, these patients rely on family caregivers to help them navigate health care and make health care choices. The absence of family caregivers from the bedside due to visitation restrictions makes it challenging to stay involved in the health care of their hospitalized loved ones. It is particularly important to reach out regularly to family caregivers to update them on progress and engage them in care, especially when making important care decisions. As patients leave the hospital, many of them rely on family caregivers to help them fill prescriptions, obtain medical equipment, and follow discharge directions. To successfully do this, family members need to be engaged in the hospital discharge process and provided clear and reliable guidance to care for their loved ones at home. This will require special arrangements from the health care team prior to discharge that include remote connections with often anxious family caregivers to help prepare them to take care of their loved one postdischarge. Insufficient family caregiver readiness for discharge can result in poor adherence to treatment plan and isolation measures, return visits to the emergency department, rehospitalizations, and increased viral transmission within families and communities.
WHAT HEALTH SYSTEMS CAN DO TO MAINTAIN PATIENT AND FAMILY ENGAGEMENT DURING THIS PANDEMIC
Ongoing meaningful engagement of patients and family caregivers during this pandemic is vital for the health and well-being of everyone. Achieving it is contingent on continued attention from organizational leaders to patient and family engagement. While restriction in family visits is a commonly accepted practice to reduce risk of hospital outbreaks, particularly in the context of personal protective equipment (PPE) shortages, special procedures are needed to maintain visitation (with modifications) for children, women in labor, patients undergoing emergency surgical procedures, terminally ill patients, and patients with disabilities and cognitive deficits that impact their ability to participate in shared decision-making. These procedures should be easy to follow so as not to marginalize patients and family caregivers with low literacy and those who may feel less empowered to advocate for themselves. One way to accomplish this is to engage advisors serving on Patient and Family Advisory Councils in development or review of those procedures. Advisors can also help review any instructional material regarding pandemic response that is being issued to patients and families from the organization to ensure clarity, simple language use, and a respectful and friendly tone. In addition to helping the organization, this offers advisors a meaningful role during this challenging period and can help maintain their engagement post–pandemic phase. Organizational efforts to leverage technology and mobilize potential resources to facilitate timely remote communications among patients, family caregivers, and providers are also critical for delivery of safe and compassionate medical care, particularly for critically ill patients. One pressing area is considering the needs of disadvantaged or disabled patients and family caregivers and ensuring that there are solutions that are accessible and applicable to them. Finally, addressing the increased burden on health care providers is crucial for maintaining patient and family engagement, particularly with the changes to routine health care operations that the pandemic response demands. For example, PPE use requires more time from providers to don and doff and so does working remotely with anxious family caregivers. Proactive efforts to creatively rearrange the workforce, mobilize volunteer resources, and increase the number of providers covering shifts can help reduce burden on individual health care providers and maintain their ability to engage with patients and family caregivers to the most extent possible during this unprecedented pandemic.
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2. Greene J, Hibbard JH, Sacks R, Overton V, Parrotta CD. When patient activation levels change, health outcomes and costs change, too. Health Aff (Millwood). 2015;34(3):431–437.
3. Carmen KL, Dardess P, Maurer M, et al. Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health Aff (Millwood). 2013;32(2):223–231.
4. National Center for Health Marketing. Plain Language Thesaurus for Health Communications. Centers for Disease Control and Prevention Web site. https://www.orau.gov/hsc/HealthCommWorks/MessageMappingGuide/resources/CDC%20Plain%20Language%20Thesaurus%20for%20Health%20Communication.pdf
. Published October 2007. Accessed April 22, 2020.
5. Ha Dinh TT, Bonner A, Clark R, Ramsbotham J, Hines S. The effectiveness of the teach-back method on adherence and self-management in health education for people with chronic disease: a systematic review. JBI Database Syst Rev Implement Rep. 2016;14(1):210–247.
6. Hellewell J, Abbott S, Gimma A, et al. Feasibility of controlling COVID-19 outbreaks by isolation of cases and contacts. Lancet Glob Health. 2020;8(4):e488–e496.
7. Zhang Q, Wang D. Assessing the role of voluntary self-isolation in the control of pandemic influenza using a household epidemic model. Int J Environ Res Public Health. 2015;12(8):9750–9767.
8. Garg S, Kim L, Whitaker M, et al. Hospitalization rates and characteristics of patients hospitalized with laboratory-confirmed coronavirus disease 2019—COVID-NET, 14 states, March 1-30, 2020. MMWR Morb Mortal Wkly Rep. 2020;69(15):458–464.