The purpose of the National Health Council (NHC) Rubric to Capture the Patient Voice (Rubric) is to provide a tool the patient community or any other health care stakeholder can use to evaluate attributes of patient centeredness and to guide them on meaningful patient engagement throughout any activity they might undertake. It is broadly applicable and more general in scope as compared to prior patient-engagement rubrics.
About Patient-Focused Medical Product Development
Patient-focused medical product development is a mechanism by which stakeholders, including but not limited to medical product developers, academics, and regulators, form a partnership with patients to enhance medical product development, throughout the research, regulatory, and reimbursement processes. PFDD is built on the belief that:
NHC Center of Educational Excellence
The National Health Council encourages patients and patient advocates to be engaged in research, policy, medical-product development, quality-of-care, and value-of-treatment initiatives. We have developed the NHC Center of Educational Excellence, an e-learning resource, to help patients and patient advocates understand complex topics related to patient centricity in health care. Here you will find our webinar series on value and payment models as well as educational curriculums on quality measures and value assessments.
There is growing interest in clinical outcomes assessments, such as patient-reported outcomes, and patient-centeredness across the health care ecosystem. For example, in 2019, the Food and Drug Administration will release two new guidance documents on clinical outcome assessment. The NHC seeks to ensure that the NHC membership is prepared to engage in conversations about clinical outcome assessment. We will post information about upcoming and past webinars, along with in-person meetings and other resources on this page.
The topic of real-world evidence (RWE) has gained considerable attention recently. As health researchers, policymakers, and regulators establish standards and structure for using real-world data (RWD) as evidence in regulatory and clinical decision making, patients must be the primary focus. Since the idea of RWD is new to many in the patient community, it is important to explore the patient community’s needs, concerns, and protentional contributions and use of RWE to ensure the patient voice is considered.
The National Health Council (NHC) envisions a society in which all people have access to quality health care that respects personal goals and aspirations, and is designed around the health outcomes most important to patients. One of the biggest barriers to access is the rising cost of care, especially for the more than 160 million American with chronic diseases and disabilities.
The U.S. health care system is undergoing a transformation in how it delivers and pays for care. As traditional fee-for-service gives way to value-based arrangements, understanding the “value” of health care has become a national priority. Value frameworks have emerged as tools to help stakeholders assess new treatments. But, the utility and role of these new tools are being debated. The National Health Council is focused on ensuring the voice of the patient and patient organizations are an integral part of this discussion.