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PCORI May2013

AAMC Patient Centered Research Newsletter

As I See It - Moving data into knowledge and knowledge into action

Taking patient centered outcomes research to the next level depends to a large extent upon our ability to connect the divergent data streams created within the research and clinical care domains. To fulfill the promise of true learning health care systems, we need a best-in-class national research network infrastructure to move data into knowledge and knowledge into action- one that supports rapid cycle learning and long-term evidenced-based quality improvement to help physicians, patients, and decision-makers make informed decision about health and health care. The network could open up pathways to expansive new partnerships across health systems, practice based networks, health plans, community-health needs assessment (CHNA) partners, state health department, Clinical and Translational Science Centers (CTSCs), disease- or patient-specific networks, patients and patient organizations and others. The possibilities for advancing comparative effectiveness and implementation research are mind-boggling.

To jumpstart this process, PCORI recently held a roundtable on Data Infrastructure Development, and concurrently announced two funding mechanisms focused on building Clinical Data Research Networks (CDRNs) and Patient Powered Research Networks (PPRNs) [see Funding below]. The roundtable experts represented the perspectives of the varied stakeholders linked in this undertaking: consumer and patient advocates, clinicians, pharma, payers, federal government agencies and health systems. Each deftly articulated the key issues to be resolved on the way to integration. Some key themes emerged:

  • Data Infrastructure. Infrastructures that allow data sharing will require an investment in standardized, interoperable formats for record collection - interoperable EHRs and other electronic data interfaces that “talk to each other.” Human resources are part of the infrastructure. The networks will require experts in designing or retro-fitting and maintaining systems to maximize interoperability and researchers with competencies in informatics to query the accumulated vast clouds of data and then appropriately turn the data into relevant knowledge.
  • Capturing Meaningful Data. With a sufficient number of continuously eligible lives with the full spectrum of administrative claims (inpatient, outpatient, physician, hospital, drug, and eligibility), biometric data, laboratory results, patient satisfaction reports, patient reported outcomes, etc, the clinical research network could be the foundation for creating a database that provides rapid cycle feedback in addition to longitudinal patient and population outcomes. This information will not only help decision-making by patients and their families, physicians but will also identify real-world trends and associations and develop new hypotheses for continued research to improve patient and population health.
  • An Inclusive and Rigorous Data Monitoring/Governance Committee. The committee should engage all stakeholders to decide on what data will be captured, develop a culture of trust, and create robust data standards while ensuring transparency, accessibility and confidentiality.
  • Patient Engagement. Patients and their families should be engaged in the beginning, middle and end of the development and utilization of the database and infrastructure. Many in the general public hesitate when offered the chance to add their own information to a registry or research database. One way to engage patients to contribute their data to research networks is to liberate data to let patients be in control of it. Patients and their care providers should be at the table to help decide what data should be included to enrich the database, build trust, learn from and share information about how their health data can contribute to collective knowledge to improve health.
  • True Data Sharing. Aligning data collection across clinical departments and between administrative processes and clinical services strengthens an institutions’ ability to understand weak points and problems areas quickly, and work toward improvement. Aggregate data across clinical service services will shine a light on issues that may easily be considered isolated or context specific problems, recasting them as large-scale matters.
  • A Marathon not a Sprint. Conversations around data infrastructures, registries, national networks are not new. This time, with the jump start from PCORI, all stakeholders need to come together tomove data into knowledge and knowledge into action. This is not just a technical issue, but a cultural shift in how we view, value, and share research data and how our institutional leaders provide incentives to those researchers who embark on research using these networks.

Academic medicine is well positioned to take on the challenge of creating a data infrastructure, poised as we are at the intersection of clinical care, research and the education of future clinicians and scientists. Integrating the education of medical students, health services researchers, residents and fellows into the development of the network will advance a culture of research and education that becomes embedded in practice - ensuring sustainability and validity of queries in the next decades. In addition, AAMC major teaching hospitals provide over one-third (38%) of all hospital charity care for vulnerable populations, so creating a network that allows for the inclusion and assessment of factors contributing to health-inequities, will provide great insight into interventions designed to narrow the disparities gaps in health and health care.

Ann Bonham., Ph.D.
Chief Scientific Officer, AAMC

PCORI Announcements

Dr. Joe Selby announced the addition of Bryan R. Luce, PhD., MBA to the PCORI staff in the new position of Chief Science Officer. Selby states “In this role, he will be responsible for leading the development and implementation of our patient-centered comparative clinical effectiveness research (CER) agenda.”

Dr. Luce is an accomplished researcher, with a broad perspective and recognized expertise in CER and consensus-building that will be invaluable as we continue to grow our portfolio of research and implement our methods standards. In the upcoming weeks, Dr. Luce will report on his vision for the PCORI research program.

Call For Comments

The Agency for Healthcare Research and Quality (AHRQ) to request that the Office of Management and Budget (OMB) approve the proposed information collection project: “Evaluating the Knowledge and Educational Needs of Students of Health Professions on Patient-Centered Outcomes Research.” In accordance with the Paperwork Reduction Act, 44 U.S.C. 3501-3521, AHRQ invites the public to comment on this proposed information collection.

Of Interest

5th Annual Integrating Quality Meeting (June 6-7, 2013; Chicago)

The annual AAMC Integrating Quality Meeting is a highly interactive, interprofessional program that brings together health care leaders, faculty, educators, residents and students from teaching hospitals, medical schools, health professions schools, and other health care organizations to share strategies for enhancing the culture of quality in clinical care and health professions education. The 2013 meeting will feature a number of presentations, interactive workshops and posters on innovative approaches to increasing value and educating for quality, aligning organizational quality strategy for health reform, implementing team-based approaches to QI, leading student and trainee QI initiatives, and supporting faculty development and scholarly careers in the field. The program will also feature two keynote speakers:Peter Pronovost, M.D., Ph.D., FCCM, Senior Vice President for Patient Safety and Quality and Director of the Armstrong Institute for Patient Safety and Quality, Johns Hopkins Medicine, and Gary Kaplan, M.D., Chairman and CEO of the Virginia Mason Health System. For complete program details and registration, visit the 2013 IQ Meeting website.

Research on Care Committee

AAMC’s Research on Care Community ROCC is focused on identifying and sharing leading approaches that support: 1) health system and research integration; 2) alignment of research and quality improvement; and 3) developing institutional commitment to clinical effectiveness and implementation research scholarship. To join ROCC send an email to with your name, title, institutional affiliation, and phone number.

The GRACE Initiative - Good ReseArch for Comparative Effectiveness. An international group of individuals aligned with research organizations, developing and endorsing good CER since 2008.

Standardizing Data Exchange in Clinical Research

Anderson and colleagues describe a cooperative effort to standardize data exchange in clinical research in theAmerican Journal of the College of Cardiology. Expanding data management beyond the local purview involves structuring data so as to allow collaboration. With a goal of complete interoperability, the National Cardiovascular Research Infrastructure (NCRI) initiated development of a model framework for data exchange in multiple areas of research and patient care.

Implementation of a registry for quality improvement

Brennan and colleagues discuss their experience in creating a disease registry to improve care for pediatric patients suffering rare conditions of Crohn’s disease, ulcerative colitis and Inflammatory Bowel Disease (IBD). The authors developed the ImproveCareNow model to enhance delivery of high quality care through pooling data, build an evidence base for best practices for pediatric IBD patients, and demonstrate continuous quality improvement.

Measurement in Comparative Effectiveness Research

In the recent American Journal of Preventive Medicine, Chubak and colleagues discuss the need for reliable CER to inform health policy and improve care for patients, consider how best to measure preventive services to distinguish between effective screening processes and outcomes, and promote the need for a shared CER lexicon among providers, patients, researchers and policy makers. The Centers for Medicare & Medicaid Services (CMS) have launched a new tool to assist health care providers to better coordinate care for people suffering from multiple chronic conditions. The Chronic Conditions Dashboard provides easily accessible data to compare and contrast Medicare data within various geographic regions.

Free Webinar: Using the PCORI Methodology Standards to Generate Robust, Relevant, and Timely Evidence for Patient-Centered Outcomes Research

Tuesday, June 4, 2013, 1:00-2:30 p.m. ET

Overview: Patient-centered outcomes research (PCOR) aims to empower patients and their caregivers by providing the evidence needed to make truly informed decisions about their health and health care. In November 2012, PCORI’s Board of Governors adopted comprehensive standards for conducting patient-centered outcomes research. The purpose of this webinar is to help researchers understand how the PCORI Methodology Committee hopes the standards will be used to support high quality, scientifically rigorous patient-centered outcomes research, and to provide examples of the standards. Drs. Joe Selby and Sean Tunis serve as faculty.

Please contact AcademyHealth if you have any questions.

Health DataPalooza

The 2013 Health Datapalooza will be held in Washington, D.C. at the Omni Shoreham Hotel. Sponsored by the Health Data Institute, the conference brings together those interested in data use in health and health systems performance and improvement. More information and registration is on the Health Datapalooza website.


PCORI recently announced two funding mechanism to support development of clinical research networks for clinical research. Both mechanism target networks collecting real world clinical data to inform patient centered outcomes research.

The AAMC and the Donaghue Foundation have partnered to offer a funding opportunity to academic medical centers who are AAMC members. Advancing Effectiveness Research and Implementation Science in our Own Backyards: AAMC / Donaghue Grant Opportunity for Academic Medical Centers was developed for academic medical centers to engage in program development and expansion in quality, safety, and equity and system effectiveness by integrating research on these issues into clinical practice. This mechanism was designed to support projects that are of importance to the local health system, are positioned within a current knowledge gap, and can advance knowledge with innovative approaches. Sustainability is of particular importance, and proposals will be prioritized if they include a considered approach to sustaining aspects of the project after its conclusion. To download the RFP, visit the ROCC website ( Proposals are due June 24, 2013.

AHRQ Patient Centered Outcomes Research (PCOR) Institutional Mentored Career Development Program (K12).

LOI due June 7, 2013
Proposal due July 17, 2013

Eligible scholar candidates include post-doctoral fellows and junior faculty or their counterparts in non-academic settings. AHRQ strongly encourages the recruitment of scholars from racial and ethnic minority groups. AHRQ also encourages submission of applications from minority serving institutions and institutions which provide health care to economically disadvantaged populations and/or have access to unique data on these populations.

The National Institute of Diabetes, Digestive and Kidney Disorders is seeking research designed to improve the understanding of the causes of disparities in health and disability in the U.S. and to develop and test more effective interventions for reducing and/or eliminating health disparities directly related to its mission. Research approaches may include metabolic, genetic, clinical, behavioral, and/or epidemiologic studies in representative populations.

LOI due: N/A
Proposal due: Standard Dates Apply

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