The US needs a Chief Patient Officer

By KAT McDAVITT and LISA BARI Regulations are created by well-intentioned government employees who, understandably, focus on the loudest voices they hear. The loudest voices tend to be from organizations — vendors, associations, large corporations — that have the internal and external resources needed to access the federal government, navigate the 80,000-employee Department of Health and Human Services (HHS), and ensure that the perspectives of their employers and members are heard. Patients do not have the resources to hire lobbyists or high-profile legal teams, nor do they have a large and well-funded trade association to represent their interests. Traditional patient advocacy organizations, while generally well intentioned, are often structured around specific conditions and often are financially supported by pharmaceutical and biotech companies. Because of this lack of access, resources, and representation, and because there is no single senior staff member in the federal government dedicated to ensuring the voice of the patient is represented, the needs and experiences of patients are deprioritized by corporate interests. As noted by Grace Cordovano, PhD, BCPA, a board-certified patient advocate, while speaking during a 2023 Health Datapalooza session on transparency and trust, “We hear a lot about provider burnout, but patients are also burnt out, and we need to take that into consideration when developing our policies.” Policy implementation matt...
Source: The Health Care Blog - Category: Consumer Health News Authors: Tags: Health Policy Kat McDavitt Lisa Bari Patients patients rights regulatory capture Source Type: blogs