Two teams led by researchers in the Perelman School of Medicine at the University of Pennsylvania have been approved for funding awards by the Patient-Centered Outcomes Research Institute (PCORI). One group will develop and expand a health data network for vasculitis patients and researchers, while the other will investigate ways to decrease rates of uncontrolled asthma among African Americans and Hispanics.
The Vasculitis Patient-Powered Research Network (V-PPRN ) data network is one of 29 that were approved for a total of $93.5 million from PCORI on December 17 to form this new national resource that aims to boost the efficiency of health research. The V-PPRN will be part of PCORnet, the National Patient-Centered National Clinical Research Network.
PCORI envisions PCORnet to be a secure, national data network that improves the speed, efficiency, and use of patient-centered comparative effectiveness research (CER). By integrating data available in the 29 individual networks, PCORnet aims to provide access to a large amount of diverse, nationally representative health information that can support a range of study designs. It will reduce the time and effort needed to launch new studies and focus research on questions and outcomes especially useful to patients and those who care for them.
Moreover, PCORnet will join together networks operated by both patient communities and health systems and will require patients' and other stakeholders' involvement in all aspects of the collection and use of the data. By enabling researchers and patients, clinicians, and other end-users of study results to interact directly and jointly determine research priorities, such as the selection specific studies to support, PCORnet aims to advance the shift in clinical research from investigator-driven to patient-centered studies.
The Vasculitis Patient-Powered Research Network (V-PPRN) team is led by principal investigator Peter A. Merkel, MD, MPH, chief of Rheumatology and professor of Medicine and Epidemiology. Partner organizations include the Vasculitis Foundation (VF), the umbrella vasculitis patient advocacy group in the United States; the Vasculitis Clinical Research Consortium (VCRC), an NIH-supported research network of vasculitis centers from across the US, Canada and around the world, led by Dr. Merkel at Penn; and an established online group of patients with vasculitis dedicated to conducting meaningful research.
"The community of patients with vasculitis and researchers studying vasculitis is extremely excited to be part of this initiative," said Dr. Merkel. During the next 18 months, this team will use the PCORI funds to expand and improve systems, work to standardize data, and be part of the process to develop policies governing data sharing and security and protection of patient privacy. "We hope that our effort to build a network within the greater PCORnet will significantly enhance the speed and efficiency of patient-centered comparative effectiveness research and help advance better treatments and outcomes for patients with these rare, organ- and life-threatening diseases of vascular inflammation."
The second award, for web-based, patient-centered comparative effectiveness research, was among eight totaling $23.2 million approved by PCORI to reduce health disparities in asthma.
Andrea J. Apter, MD, MA, MSc, a professor of Medicine, chief of the section of Allergy & Immunology in the division of Pulmonary, Allergy and Critical Care, is the principal investigator for the project. Tyra Bryant-Stephens, MD, clinical associate professor of Pediatrics at the Children's Hospital of Philadelphia is co-principal investigator. The project is a collaboration with the Community Asthma Prevention Program. In addition to UPHS patients, the study will also enroll patients from the Comprehensive Health Center of Episcopal Hospital, a collaboration with Temple Physicians, Inc.
The research will use information technology to improve access and communication and asthma in African American and Hispanic/Latino adults. Asthma burden is high in inner-city minority adults, despite the existence of safe and effective medication. New ways to improve access to care and patient-provider communication are greatly needed.
The team will examine the benefits for adults of using an Electronic Medical Records (EHR) feature called the patient portal, which offers patients web-based communication with providers and practices. They will evaluate the portal with and without home visits by community health workers who will encourage patient portal use, understand patients' social context, and enhance communication with the medical team. They hypothesize that all patients will benefit from these patient portals, and that the addition of home visits will be particularly helpful for those with low literacy or language barriers.
"We're honored to be recognized by the PCORI with this award, and admire their efforts to focus on populations that are suffering the most from this disease," said Dr. Apter. "Our interventions have the potential to help enhance patient-clinician communication, access to care, and improved health for these underserved groups."
These programs were selected through a review process in which patients, caregivers, and other stakeholders joined scientists to evaluate the proposals. Applications were assessed for the capacity of their network to collect complete, comprehensive clinical data, how well they will engage patients and other stakeholders, and their ability to maintain data security and patient privacy, among other criteria.
All awards are approved pending completion of a business and programmatic review by PCORI staff and issuance of a formal award contract.
PCORI has awarded a total of $464.4 million since it began funding CER in 2012.
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