Real-World Evidence

Real-World Evidence: The Patient Perspective

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 potential contributions and uses of RWE to ensure the patient voice is considered.

NHC Policy Proposals for Reducing Health Care Costs

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 patient experience to promote their best possible health outcomes. One of the biggest barriers to access is the rising cost of care, especially for the more than 133 million Americans with chronic diseases and disabilities.

Medical Innovation

More than 133 million Americans live with one or more chronic conditions, many of which lack effective treatments.

The National Health Council (NHC) is leading patient advocacy organizations to support legislative efforts that focus on making sure that limited health care research dollars are spent most effectively to encourage medical innovation that will meet the needs of patients.

Marketplace Enrollment

Whether shopping for a car, or a computer, or health insurance, having choices can be a good thing. But if you don't have all the information you need to do an accurate side-by-side comparison - or the information isn't presented in a way to make it easy to compare - the decision process becomes very frustrating. If a consumer picks health coverage that doesn't meet his or her unique health and budget needs, health care costs can add up.

Patient Engagement

There is little consensus-based guidance on how to conduct patient engagement or assess whether an approach to patient engagement will yield meaningful results for all parties involved. From a researcher and drug developer perspective, little guidance exists to determine who should be involved, how and what role the patient community should have, and at what points in the process the patient community should be engaged.

ACA Implementation

Prior to passage of the Affordable Care Act (ACA), an estimated 36 percent of Americans who tried to purchase health insurance directly from an insurance company were denied coverage, charged higher premiums, or received limited benefits because they had a pre-existing condition.

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