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Today, however, McGinnis noted, the translation from evidence to care isoften lacking with respect to the extent of its application, and the careexperience itself is, for the most part, poorly captured, which limits theopportunity for feedback that could further inform and improve care. Whatthe nation needs instead is to bring the practice and culture of scienceinto the networked age and create a virtuous cycle of learning, one thataligns science, informatics, incentives, and culture to produce continuousimprovement and innovation, and one that embeds best practices seamlesslyinto the delivery process and that captures new knowledge as an integralby-product of the delivery experience. McGinnis said that many of theworkshop participants could testify to the value of creating such asystem.
McGinnis also reminded the workshop participants that the Best Careat Lower Cost report had been revisiting the ground laid by twoearlier IOM reports: To Err Is Human: Building a Safer HealthSystem and Crossing the Quality Chasm: A New HealthSystem for the 21st Century, which were issued in 1999 and2001, respectively. The 2012 report, McGinnis said, provided an update onthese two earlier reports in the context of the increasing complexity andcost of health care and also in the context of the new tools and levers thathad become available for continuous quality improvement, through theprovisions of the Health Information Technology for Economic and ClinicalHealth Act and the Affordable Care Act, as well as in the context of theoverall increase in learning capacity stemming from advances in researchmethods and in the nation's digital infrastructure. The 2012 reportcalled for ramping up real-world and real-time learning strategies thatemploy data science to engage both structured and spontaneous learning. Thereport noted that work that is patient participatory in nature is anuntapped resource for the learning process. The goal should be to create alearning infrastructure that is research-ready, multiuse, focused on bothquality and knowledge generation, and patient accessible.
McGinnis mentioned, too, that the context of the 2012 report also reflectedthe 15 reports that the Roundtable had developed over the previous 7 years.These reports explore various elements of the multiple issues involved increating a continuously learning health care system, such as effectivenessresearch, the implications of the growing complexity of care, the valueproposition, and the digital platform needed for a learning health system.McGinnis also noted the work that the IOM has done with the Office of theNational Coordinator for Health Information Technology in laying out thevision for the digital platform for continuous learning in health and healthcare (see Figure 2-2).
The ethics and regulatory oversight task force is looking at issuesconcerning informed consent and how to balance the concerns of institutionalreview boards (IRBs) and the need to streamline and accelerate research. Thedata standards task force is not concerned with establishing a new set ofstandards but is looking at ways of encouraging electronic health recordvendors to make greater and more consistent use of the nationallyagreed-upon standards that already exist. The task force on health systemsinteractions is working to maintain, strengthen, and nurturePCORnet's relationships with health care delivery systems, while thepatient and consumer engagement task force is doing the same for patientgroups. The patient-generated outcomes task force is working from thepremise that getting patient-generated outcomes is another area that couldgreatly enhance clinical care and could also enhance clinical and outcomesresearch, Selby said.
Shelby explained that the CDRNs (see Table 2-1) include a number of networks of two or more healthcare systems, networks of nonprofit integrated health systems, networks offederally qualified health centers, and networks that have leveragedprevious NIH and AHRQ investments. At least 54 of the 61 Clinical andTranslational Science Award winners are involved in one of PCORnet's11 CDRNs, and many of them include large populations of underservedindividuals. The Louisiana CDRN, Selby said, is built substantially on thestate's health information exchange. Among the PPRNs in PCORnet (seeTables 2-2 and 2-3), whose focus is thecollection and use of patient-generated information, about half are devotedto rare diseases.
In concluding his comments, Baxter said that if PORTAL can contribute toPCORnet and if PORTAL's members are able to integrate findings fromPCORnet into their own care delivery systems, that would serve as a proofpoint not only for the importance of research but also for the importance ofengaging with others in a collaborative manner to speed the development andadoption of knowledge on a broad scale. In his opinion, he said,PCORnet's success will not only accelerate the pace of change, but itwill also change the culture of research for the be