This amounts to a great deal of change. Yet in many ways it is much less change than we would wish. In spite of much forward motion over the years, it is clear that many major patient safety problems have remained depressingly constant, and that gains in some areas have been offset by setbacks in others. One area that has seen significant advances is public reporting of quality data, at a federal level (Hospital Compare), in some states (hospital-acquired infection and sentinel events), and by private entities like Consumer Reports and The Leapfrog Group. Even so, raters have been constrained by the compartmentalized nature of publicly available data. This situation has the potential to change considerably with the availability of more granular "big data" like the recently released Medicare Part B Supplier Billing and Payment Data, but we are still far from meeting the goals of the earliest consumer advocates of providing information that will drive truly informed consumer choices.(32)
This is a GREAT overview of the history of patient led advocacy around medical safety from the 70's on, and should be required reading for all of us that are doing policy advocacy around health care reform.........
The passage of the Affordable Care Act (ACA) in 2009 marked another discernible leap forward. While the idea of consumer involvement in implementation of legislation was not a new one, two of the ACA's new platforms, the Patient-Centered Outcomes Research Institute (PCORI) and the Partnership for Patients, led to a sea change in the interaction of patients with hospitals, researchers, and other health care groups.(30,31) As PCORI sought to include patients in all aspects of research and the Partnership for Patients promoted patient involvement in driving down harm in hospitals, patients and patient groups found themselves being actively courted by organizations whose ear they had had trouble getting not long before. The principles of family-centered care have now gained wide acceptance, and in some hospitals patients have been placed on key committees throughout the institution—a move with transformative potential if purposefully done. Concurrently, the move toward accountable care organizations and community-based care has led to greater emphasis on provider collaboration with ethnically diverse and vulnerable populations on an outpatient basis.