Health advocacy

Health advocacy or health activism encompasses direct service to the individual or family as well as activities that promote health and access to health care in communities and the larger public. Advocates support and promote the rights of the patient in the health care arena, help build capacity to improve community health and enhance health policy initiatives focused on available, safe and quality care. Health advocates are best suited to address the challenge of patient-centered care in our complex healthcare system. The Institute of Medicine (IOM) defines patient-centered care as: Health care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients' wants, needs, and preferences and that patients have the education and support they need to make decisions and participate in their own care. Patient-centered care is also one of the overreaching goals of health advocacy, in addition to safer medical systems, and greater patient involvement in healthcare delivery and design.

Health advocates play a pivotal role in facilitating patient-centered care by ensuring that healthcare systems accommodate diverse cultural, linguistic, and socioeconomic needs. Advocacy efforts have shown significant potential in reducing healthcare disparities by incorporating culturally tailored strategies. For instance, health advocates working with immigrant populations often address critical barriers such as language gaps, lack of access to interpreters, and unfamiliarity with healthcare navigation processes. These barriers can hinder patients’ comprehension of their health conditions and limit their active participation in care decisions. Evidence-based practices in advocacy have demonstrated improved outcomes when healthcare providers and advocates collaborate to implement tailored communication strategies, including multilingual resources and cultural competence training for medical staff. Research highlights that embedding such advocacy within healthcare institutions has led to measurable improvements in patient satisfaction, treatment adherence, and health outcomes in underserved populations.

Patient representatives, ombudsmen, educators, care managers, patient navigators and health advisers are health advocates who work in direct patient care environments, including hospitals, community health centers, long term care facilities, patient services programs of non-profit organizations or in private, independent practice. They collaborate with other health care providers to mediate conflict and facilitate positive change, and as educators and health information specialists, advocates work to empower others.

In the policy arenas health advocates work for positive change in the health care system, improved access to quality care, protection and enhancement of patient's rights from positions in government agencies, disease-specific voluntary associations, grassroots and national health policy organizations and the media. Health advocates have also been instrumental in shaping public health policies, particularly through efforts to expand access and enforce patient protections under the Affordable Care Act (ACA). By advocating for expanded Medicaid coverage, health advocates addressed critical gaps in healthcare access for low-income populations, ensuring millions of Americans received essential services. Their advocacy efforts also defended patients' rights to pre-existing condition protections, helping to eliminate discriminatory practices by insurers. Furthermore, health advocates have increasingly focused on racial and socioeconomic disparities, emphasizing policy changes aimed at equitable distribution of healthcare resources. Research underscores that these efforts have contributed to improved health equity, reduced mortality rates, and increased preventive care utilization in marginalized communities. These advocacy initiatives often involve multifaceted approaches, including lobbying for policy reforms, conducting public awareness campaigns, and partnering with community organizations to implement sustainable changes.

There may be a distinction between patient advocates, who work specifically with or on behalf of individual patients and families, or in disease-specific voluntary associations, and health advocates, whose work is more focused on communities, policies or the system as a whole. Often, however, the terms "patient advocate" and "health advocate" are used interchangeably

Rapidly growing areas of health advocacy include advocates in clinical research settings, particularly those focused on protecting the human subjects of medical research, advocates in the many disease-specific associations, particularly those centered on genetic disorders or widespread chronic conditions, and advocates who serve clients in private practice, alone or in larger companies. The rise of telemedicine and digital health technologies has created new opportunities for health advocacy. Digital health advocates now play a critical role in ensuring equitable access to telehealth services, especially for rural and underserved populations. They help address barriers such as limited broadband availability, lack of digital literacy, and disparities in access to reliable technology. Additionally, digital health advocates collaborate with healthcare providers to develop user-friendly telemedicine platforms that comply with data privacy regulations. During the COVID-19 pandemic, telehealth usage surged, and evidence suggests it significantly enhanced access to care for patients with chronic illnesses, mental health needs, and other conditions. However, disparities persist, particularly among older adults and individuals in low-income households. Health advocates focus on implementing programs such as free or subsidized internet access, digital literacy workshops, and public funding initiatives to expand telemedicine's reach. Advocacy in this sector is essential to ensuring that digital healthcare remains an integral, equitable part of modern medical systems.