In May, the National Academy of Medicine held a meeting focused on furthering patient- and family-engaged healthcare. Patients, patient advocates, healthcare providers, researchers, and representatives from government agencies and organizations involved in patient care, program, and policies came together to talk about ways to build on research to promote patient- and family-engaged care.
On one level, “patient-engaged care” means that patients, families and healthcare providers work together to improve health, beginning with one-on-one care in the doctor’s office. Patient- and family-engaged care can also extend beyond the direct care setting, though, to the broader healthcare system and to healthcare policy. A framework describing the range of patient and family involvement in healthcare was first published in 2013. “Patient and Family Engagement: A Framework for Understanding the Elements and Developing Policies and Interventions.” Health Affairs, Vol. 32, No.2 (February 2013)
An increasingly common way for patients and family members to get involved with the healthcare system is through hospitals’ patient and family advisory councils (PFAC). PFACs draw on the experiences of patients and families to improve the care a hospital provides, in order to improve the overall experience for all patients. More than 2,000 US hospitals offer PFACs – but more than 60% do not. If yours has launched a PFAC, look into joining it. If not, talk with hospital representatives about starting one. The Patient & Family Health Care Leadership Resource Compendium can show you how to begin.
Patients and family members also can use their experience to shape policy at the local, state, and national levels. There are many ways to get involved: collaborate with community leaders and policymakers, such as government officials or health plan representatives, to help determine the future of healthcare policy. Contact your elected representatives to ensure that your point of view and patient experience informs allocation of resources. For inspiration, review the Roadmap for Patient and Family Engagement in Healthcare. Or, for information about contacting policy makers such as your Member of Congress, see the George Washington University Cancer Institute’s Prepared Patient website.
By partnering with healthcare providers and decision-makers, you and your family can make a difference in your care and in the care of others!