How Patient Groups Have Begun To Influence The Value And Coverage Debate

In 2015, two issues related to medicine could be relied on to generate headlines: drug pricing and the proliferation of new value frameworks that claimed to define the value and even the price of drugs in seemingly easy-to-understand ways. In none of the high-profile skirmishes on pricing or frameworks was the voice or perspective of patients and patient groups very much in evidence. But that is beginning to change, in an evolution of a broader shift in the role that patients are playing in the research and development (R&D) enterprise. A New Culture of Engagement Patients and patient organizations are becoming ever more important drivers of medical research and development. Players, including academic institutions, biopharma companies, and regulators, have “gotten the memo” about the value to be derived from seeking the input of patients—qualitative and quantitative—from the early stages of research through the evaluation and approval of new treatments. In a recent article published in Science Translational Medicine, we documented the progression of patients over the last century from passive recipients of medical care to active partners in defining and prioritizing research strategy for their diseases. Much uncertainty remains about how best to collect and utilize patient data and perspective in ways that satisfy the needs of all the parties involved. (FasterCures is working to help reduce that uncertainty through its Patients Count program.) But many...
Source: Health Affairs Blog - Category: Health Management Authors: Tags: Costs and Spending Health Professionals Organization and Delivery Quality clinical research patient use of evidence venture philanthropy Source Type: blogs