As the National Patient-Centered Clinical Research Network (PCORnet), a PCORI initiative, continues to gain momentum as a model for patient-centered research, several notable publications are recognizing the Network’s innovation. Three recent publications are out that provide evidence of PCORnet’s increasing influence in the movement toward community-driven research.
The first is a discussion paper released by the National Academy of Medicine that considers the benefits of moving to a continuous learning healthcare system, which has been a goal of PCORnet since its inception. In such a system, both experience and research are simultaneously used to generate new knowledge and improve patient involvement and care processes. The paper argues that achieving a continuous learning healthcare system is possible by actively engaging front-line clinicians in the design and conduct of activities. This continuous learning atmosphere will create new knowledge, return data to clinicians and patients to guide care, reduce costs, and create value for those served. The paper was co-authored by several individuals affiliated with the PCORnet Coordinating Center, the ADAPTABLE Study, the INVESTED Study, the New York City Clinical Data Research Network (NYC-CDRN), and the Research Action for Health Network (REACHnet).
Understanding and communicating the key concepts of this learning system is a priority for PCORnet, and in order to help this movement, we are committed to engaging diverse stakeholders through various social media tools and platforms. Here, you can find a social media toolkit developed by the National Academy of Medicine that includes suggested messages and graphics designed to help you and your team to promote and communicate the importance of moving to a continuous learning healthcare system.
Along with the push for a continuous learning system, there is also an increasing need for new informed consent processes to drive efficiency in patient engagement. To that end, the New England Journal of Medicine (NEJM) recently released an article that highlights how PCORnet’s ADAPTABLE study is positively changing clinical research by engaging in electronic consent processes and web-based design to improve and expand the informed consent processes for both researchers and participants. According to the NEJM article, most studies have shown that participants recall crucial facts about a study better with the use of these kinds of interactive features, proving that PCORnet and its ADAPTABLE study are transforming the culture of clinical research to put patients’ needs first.
Finally, PCORnet recently received yet another shout-out with a perspective piece for Circulation, a journal of the American Heart Association, compiled by Adrian Hernandez, ADAPTABLE Study Co-PI, and Henry Cruz, a patient Adaptor in the ADAPTABLE Study. In this article, the two authors discuss the need for and benefits of a national learning health system and how PCORnet is conducting research with enhanced quality, speed, and efficiency in “real-world settings” to achieve such a system. The piece also mentions the ADAPTABLE study’s collaboration with ADAPTORS, a group of patient representatives who are shifting the role of patients in the research process from participant to partner, and how this collaboration creates an effective organizational vision that can be useful in addressing one of the nation’s most pressing public health problems: cardiovascular disease.
While these three pieces are an exciting achievement, we anticipate that PCORnet’s momentum will only continue to build. Be on the lookout for more mentions of our innovative Network in the months to come!
The Patient-Centered Outcomes Research Institute (PCORI) is an independent, nonprofit organization authorized by Congress in 2010. Its mission is to fund research that will provide patients, their caregivers, and clinicians with the evidence-based information needed to make better-informed healthcare decisions. PCORI is committed to continually seeking input from a broad range of stakeholders to guide its work. More information is available at www.pcori.org.
PCORnet, the National Patient-Centered Clinical Research Network, is an innovative initiative of the Patient-Centered Outcomes Research Institute (PCORI). The goal of PCORnet is to improve the nation’s capacity to conduct clinical research by creating a large, highly representative network that directly involves patients in the development and execution of research. More information is available at www.pcornet.org.