Issue Brief: Patient and Family Engagement: A Partnership for Culture Change

Clinician and Leadership Preparation

In order for the benefits of patient and family engagement strategies to be realized, health care providers and health care leadership must understand the key concepts of patient and family engagement, utilize engagement strategies, and understand how to support and encourage the cultural transformation that patient and family engagement requires. Providers and health care system administrators need to understand not only the concept and importance of patient and family engagement, but also how to effectively engage patients and families. However, few providers receive training on patient and family engagement. Health education programs, both pre-service and in-service, should educate health care providers on how to provide patient- and family-centered care and how to engage patients and families in their care. Patients and families should be included in designing and implementing these trainings. In addition, health professional licensing boards and associations should consider incorporating concepts and skills for patient- and family-centered care and patient and family engagement as a core competency that is included in initial licensure requirements, as well as maintenance of ongoing certification requirements.

Care and System Redesign

Redesigning system processes, policies, and structures to provide opportunities for and support of partnerships between patients, families, and the health care team is necessary to facilitate patient engagement. In order to redesign care and systems, it is important to implement communication mechanisms that help clinicians elicit, understand, and respect patient perspectives and concerns. Redesign may also include structuring care processes to support and value shared decision-making, involving patients and families in care planning and self-management, sharing information, and providing specific engagement opportunities. The North Carolina Hospital Association and all health care systems in North Carolina should encourage and support patient and family engagement at all levels of health care systems by making patient and family engagement an organizational goal, implementing evidence-based strategies to enhance patient and family engagement, and assessing the impact of patient and family engagement strategies. Additionally, the North Carolina Medical Society, the North Carolina Hospital Association, the North Carolina Community Health Center Association, and other partners should promote policies and processes that support and encourage patient and family engagement including welcoming and supporting patients and families, and establishing policies and procedures that promote patient and family engagement in all aspects of their health care experience.

Family caregivers are an important member of a patient's health care team and should be recognized as such by health care providers. Almost half of family caregivers perform medical tasks such as wound care and operating complex medical equipment.¹⁷ Many of these family caregivers are not trained in these tasks prior to the patient needing their support. These caregivers need training and skills to facilitate their engagement. Health care organizations should adopt policies that recognize the role of caregivers as members of the health care team, including documenting family caregivers, acknowledging their role as part of the care team, and identifying caregiver support resources.

Organizational Partnership

When fully realized, patient and family engagement extends beyond the direct care experience and influences all aspects of health care organizations. There are many ways health care organizations can integrate patient and family perspectives and experiences into their governance structure and organizational decision-making. Creating opportunities throughout health care organizations for patients and family members to influence decisions can help ensure health care organizations are meeting the needs of the communities they serve. Health care organizations should appoint a minimum of two patients (or family members) to boards and advisory committees within their organizations. To the extent possible and practical, patients (or family members) should represent the diversity of the community served by the health care system. Patients (or family members) should receive training and mentoring to help prepare them to be productive board and committee members.

Creating a patient and family advisory council (PFAC) is another strategy to ensure the needs and concerns of patients and families are heard and used to inform decision making. PFACs are teams of patients and families working with providers and staff to provide an opportunity to engage patient perspectives in the planning, implementation, and evaluation of health care services and programs.¹⁸ Health care organizations should develop patient and family advisory councils (PFACs) to provide input into the governance and operation of health care at all levels. PFACs should represent the community that the agency or health care organization serves.

Measurement, Research, Transparency, and Accountability

Data can be used to inform patients and families about the success of efforts by health care providers to embrace patient and family engagement, and can drive consumer decision making. A key strategy to increasing patient and family engagement is for an organization to create measures and conduct research to improve care, facilitate changes in processes, and assess the relationships among engagement, experiences, and outcomes.⁶ The North Carolina Hospital Association, in partnership with the North Carolina Medical Society and organizations that provide care management services, should work with patients and families to develop patient and family engagement measures, and collect and disseminate data, in hospitals and ambulatory settings across the state.

Patient and family engagement in health care will ultimately require improved access to information. Some patients want information such as the cost of care, how often a doctor or hospital performs a certain type of procedure, or the complication rate. Such data is collected by both health care providers and payers and may be available for the most common procedures, but may also be difficult to access, as well as not always easy to understand. If patients have more information about the cost of their health care, they may make more informed decisions about treatment. As they become responsible for more out of pocket costs, patient groups have shown more readiness to partner in their care, use available tools, and find ways to lower their costs.¹⁹ While taking care to use principles of health literacy and shared decision-making, efforts should be made to provide patients with more information about costs of health care, which will help them select higher value care that better meets their needs.²⁰ All health care systems and providers should ensure information on services, cost, and quality is easily accessible to consumers in print and electronic formats, and payers should provide, on their websites and in their written materials, information that is easily understood by consumers on covered providers and common procedures, including data on costs, quality, safety, and patient experiences. The North Carolina General Assembly should collaborate with the North Carolina Department of Insurance, health care systems, and insurers to create a statewide, mandatory data reporting system to enhance pricing transparency for medical care and health care services. This collaborative effort should include input from additional stakeholders on database use and access. Participating stakeholders should include employers, health care providers, academic and industry researchers, and patient and family advocacy groups.

Transparency around quality and costs is one method to help consumers make more informed choices about their health care. Another potential method is collaborative documentation or charting. Collaborative charting refers to a spectrum of shared medical record keeping between the health care provider and the patient. Collaborative documentation is a promising technique for engaging patients and families in care. Health care organizations should promote efforts to increase collaborative documentation aimed at increasing patient and family engagement. The North Carolina Quality Center and the North Carolina Hospital Association should continue to provide consultative support to health care organizations implementing collaborative documentation.

Legislation, Regulation, and Partnership in Public Policy

There is significant opportunity in health care to align legislation, regulation, and public policies with the principles of patient and family engagement, while improving health outcomes and quality of care. Payers of health care services wield enormous influence over available health care services based on reimbursement policies. There are many opportunities for health care payers to promote and support patient and family engagement through member education, reimbursement policies, and health care plan design. Payers (insurers) should consider changes to health plans and policies that support patient and family engagement. Those changes may include creating new payment options, developing member advisory committees, and providing more accessible information to consumers.

Health care organizations are leaders in their communities, employ large numbers of people, and have a unique perspective on the importance of maintaining a healthy workforce, all of which make them well suited to implementing comprehensive worksite wellness programs. Worksite wellness programs are an evidence-based approach to engage employees in their health care. Health care organizations should, with employee input, develop and implement comprehensive worksite wellness programs that include employee engagement strategies. They should encourage other community employers to as well.