Patient and Stakeholder Engagement in Research: The PCORI Opportunity
Young, Heather M.
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Session presented on Sunday, July 24, 2016: Purpose: This symposium will highlight results of a Patient-Centered Outcomes Research Institute (PCORI) funded program of research focused on nurse coaching and emerging mobile technologies to enhance and improve the lives of persons living with diabetes. Diabetes affects more than 29 million people in the United States, and an estimated 86 million people have pre-diabetes. The World Health Organization estimates that 9% of people have diabetes globally, and that by 2030, diabetes will be the 7th leading cause of death. Diabetes type-2, the most common type of diabetes, is amenable to interventions that focus on behavior changes such as physical activity and diet. There is increasing evidence that person-centered models of care that target behavioral health are more successful in improving and addressing chronic illnesses such as diabetes. mHealth technologies are emerging as a promising approach to engage persons with diabetes in improving their management of the disease. Smart phones apps and text messaging allow persons with diabetes to receive health information wherever they are. If this technology is developed to allow bi-directional, timely communication of data and tailored feedback, it has the potential to change an individual's health behavior and prevent or mitigate the factors that lead to disease. Globally, over 4 billion people are using mobile phones, and almost half have smart phones. Given that 91% of adults in the United States own a mobile phone, 63% of adult cell phone owners report use of their phone to access the inteRN, and 62% of adults with two or more chronic conditions report tracking a health indicator, it appears the barriers to mHealth technology access are being quickly overcome and will assume a larger role in future health care leading to improved health outcomes in individuals with chronic diseases. Methods: This symposium will feature different elements of the PCORI funded research: patient and stakeholder engagement, integration of sensor and mobile health technologies into healthcare delivery and social media for diabetes self-management support. Results: The first presentation will explore patient engagement in research and strategies to engage patients, providers and technology thought leaders to inform research and drive health system change. The second describes the results of focus groups with individuals with diabetes and providers on the potential for wireless activity trackers on managing chronic conditions. The third describes how an innovative platform was developed and tested that has the capacity to collect and integrate sensor-driven patient generated health data into the electronic health record for clinical practice. The fourth presentation utilizes a case study approach to demonstrate how integration of sensor driven patient generated health data can inform and enhance a nurse health coaching intervention. Conclusion: Innovative health technologies have the potential to increase engagement of individuals with diabetes with personalized, targeted education, action plans or feedback wherever they may be. Research and health programs that are person-centered and responsive to patient priorities have the potential to promote healthier behaviors, motivate change and improve care and outcomes.