Skip to Content

PCORI July & August 2013

AAMC Patient Centered Research Newsletter

As I See It - Tipping point in multisite clinical research

Are we approaching a "tipping point" in coordinated, multisite clinical research? A bold new initiative from PCORI to fund two different clinical research data networks is a prime example of efforts to move from conversation to action on large-scale initiatives that connect research to care delivery to make it more rapid, relevant and patient-centered. The PCORI Clinical Data Research Network provides funding to help health systems build the requisite capacities to conduct comparative effectiveness research within collaborative networks. These distributed networks with access to rich data on a sufficient number of continuously eligible lives-including the full spectrum of administrative claims (i.e. inpatient, outpatient, drugs, eligibility); biometrics; laboratory results; patient satisfaction and other survey measures-will likely be of sufficient heft to solidly tip the scale on clinical research. To my mind, the networks are the best possible platform for understanding health and healthcare in real-world conditions and will accelerate the development and testing of new hypotheses and predictive models.

The other network pioneered by PCORI, the Patient Powered Clinical Research Network, funds a subset of large-scale research networks to be driven by patients who desire and deserve an active role in comparative effectiveness research on issues important to them and their families. These patient-centered networks will no doubt narrow the gap between hope and reality for patient advocacy groups who have long argued that such patient-centered networks were needed to create opportunities for patients and citizens themselves to not only be part of science and research, but to drive research and become citizen scientists. In essence, these networks broaden the research community to include all stakeholders who are committed to research to improve health.

Some keys for success: One key for success will be to build trust, such as by engaging focus groups of patients and stakeholders from the beginning when deciding what information should be collected and how (e.g. What outcomes are important to them? What are the perceived barriers to collecting information? Are there privacy fears? How will the data governance structure address them?). Likewise, trust can be cultivated by communicating and disseminating outcomes in a manner meaningful to the full range of audiences.

A second key for success will be to continue to take advantage of the knowledge generated by fundamental basic research - a hub of innovation that could link mechanisms and molecular understandings to clinical outcomes or other epidemiologic trends identified by large-scale analytics.

A third key will be to integrate education and learning of medical students, researchers, residents, fellows and others to create a culture of inquiry, critical thinking and continuous learning that becomes embedded in practice - ensuring the sustainability and validity of these queries in the next decades.

There is great hope that these networks will provide momentum to a wide array of critical areas. We may soon see new insights into intractable medical challenges, more reliable diagnostics, true precision medicine, and interpretable results from comparative effectiveness studies. However, there will be some less visible benefits. By connecting so intricately with patients and the public, results of studies from these networks could heighten the public understanding and commitment to ensuring the sustainability of medical research in the US. And finally, the outcomes of these studies could drive new questions in fundamental discovery to continue our laudable advances in the physiologic and molecular underpinnings of health and disease.

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


PCORI recently made two new funding announcements targeting specific patient populations.

The first funding announcement targets asthma among African American and Latino individuals and populations. The RFA is focused on comparative effectiveness research (CER) concerning interventions to increase clinician and patient adherence to clinical guidelines. PCORI is interested in methods to improve implementation of evidence-based guidelines designed to improve outcomes for asthma outcomes in the target populations. Of particular interest are multidimensional approaches to patient care that can be implemented within home, community and health system levels. Letters of intent are due August 1, 2013, with proposals due September 18, 2013.

PCORI also released an announcement seeking applications on falls prevention. In partnership with the National Institutes of Aging (NIA), PCORI issued an RFA from researchers interested in conducting a large-scale, multi-pronged clinical trial on prevention of injuries related to falls in non-institutionalized older adults. Letters of Intent due October 13, 2013, with proposals are due November 13, 2013.

Of Interest

Science of Community Engaged Research - Future Directions
6th Annual National CTSA Community Engagement Conference
Thursday - Friday, August 22 - 23, 2013
Bethesda North Marriott Hotel & Conference Center, 5701 Marinelli Rd, Bethesda, Md. 20852

Conference Purpose: To assess the state of the science of community engaged research and develop a plan for the future. To register and for additional information

Clinical Community Relationships Evaluation Roadmap

A new tool for researchers and clinicians interested in research and evaluation of clinical-community relationships was released by AHRQ. The Clinical-Community Relationships Evaluation Roadmap is targeted to program evaluators, funders and researchers working to advance research and research measures in clinical-community initiatives around primary care. The Roadmap address selected clinical preventive services, and offers insights that may be applied to other clinical and non-clinical services, and assist in coordinating activities between clinical providers and community organizations. PCORI is hosting a regional workshop in Memphis Tennessee on August 1, 2013, hoping to draw patients, caregivers and local clinical professionals from nearby states to discuss strategies for building patient centered research communities in underserved areas. The goal is to provide the regional community with information about PCORI, opportunities for community members to become involved, and a chance for PCORI to hear viewpoints and ideas about how to engage in patient centered research within underserved communities.

AHRQ Announces Interest in Patient-Centered Outcomes Research (PCOR) Mentored Career Development Grants focused on Methodologies and Research in Translation, Implementation, and Diffusion of Research into Practice and Policy (NOT-HSO13-010)

The purpose of this Notice is to announce AHRQ's intent to support Patient Centered Outcomes Research (PCOR) career development grants (K01, K08, K18) that focus on the uptake of evidence-based clinical and system interventions that work best for specific populations, in specific settings, under specific circumstances. A critical component is development of strategies that meaningfully engage stakeholders (e.g., patients, providers, administrators, communities, patient advocates, families, organizations).

These grants will support the mentored career development of clinical and research doctorates who are interested in the development, implementation and evaluation of strategies for the translation, dissemination, and uptake of PCOR and effective clinical and system interventions. Areas of interest include:

  • Health Communication in PCOR
  • Decision Making in PCOREvidence Dissemination and Implementation in PCOR
  • Evidence Dissemination and Implementation in PCOR

NIH to fund Big Data Centers

The National Institutes of Health announced it will fund up to $24 million per year for four years to establish six to eight investigator-initiated Big Data to Knowledge Centers of Excellence. The centers "will improve the ability of the research community to use increasingly large and complex datasets through the development and distribution of innovative approaches, methods, software, and tools for data sharing, integration, analysis and management. The centers will also provide training for students and researchers to use and develop data science methods."

Insurance Industry fees will support PCORI research

The Common Wealth Fund featured a segment on payments by insurers into the PCORI trust fund established for by the Affordable Care Act, to fund PCORI's health care research initiatives. By July 31 of this year and each year thereafter until 2019, health insurance companies are required to deposit funds to support patient centered research. Results from PCORI supported research on patient centered outcomes could ultimately benefit the insurance industry, by identifying treatments and procedures found to be less effective than others in various patient populations.

Research evaluation

AAMC Chief Scientific Officer Ann Bonham, Ph.D., recently wrote an online commentary for The Scientist on research evaluation. Dr. Bonham said that by taking the lead in demonstrating accountability as well as evaluating and communicating the value of medical research to broad audiences with a suite of academic and non-academic measures, the medical school community can bolster ongoing public support for funding.

Educational tools for public health

The AAMC's MedEdPORTAL has announced a call for submissions for educational tools and resources to be included in its Public Health Collection. This collection serves to support the expansion of a better prepared health workforce by identifying, developing, and sharing resources aimed at improving the public health content along the continuum of medical education. Through the AAMC-CDC Cooperative Agreement, this collection supports the goals of CDC's Academic Partnerships to Improve Health by enhancing the teaching of population health concepts. The three options for submission to the MedEdPORTAL Public Health Collection include: Publications, iCollaborative, and CE Directory, which represent peer-reviewed curricula, effective practices and innovations, and continuing education courses, respectively.

Social Media resource for federally funded research advances

The AAMC on Monday announced a new social media resource to highlight federally funded medical research advances being made by scientists and physicians at the nation's medical schools and teaching hospitals. The new Tumblr feed also includes stories of patients who have benefited from advances in medical research. Part of the AAMC's Research Means Hope initiative, the new feed is intended to serve as a resource for legislators and staff, the media, patients, and anyone else who is interested in learning more about the medical research discoveries happening as a result of the nation's sustained federal investment in medical research. Scientists and physicians at the nation's medical schools and teaching hospitals conduct about half of all external research funded by the National Institutes of Health. Searchable by state, disease category, institution, and funding source, the new Research Means Hope Tumblr feed currently includes more than 280 posts highlighting medical innovations, with more content (including videos, photos, and text) added by AAMC-member institutions on a daily basis. Over time, the AAMC hopes it will serve as a central repository for news about medical research advances by medical schools and teaching hospitals.

CMS Innovation Center has posted year one results for the Pioneer ACO Model

The CMS Innovation Center has posted year one results for the Pioneer ACO Model, which was "designed for health care organizations and providers that are already experienced in coordinating care for patients across care settings." CMS said, "Costs for the more than 669,000 beneficiaries aligned to Pioneer ACOs grew by only 0.3 percent in 2012 where as costs for similar beneficiaries grew by 0.8 percent in the same period. 13 out of 32 pioneer ACOs produced shared savings with CMS, generating a gross savings of $87.6 million in 2012 and saving nearly $33 million to the Medicare Trust Funds. Pioneer ACOs earned over $76 million by providing coordinated, quality care. Only 2 Pioneer ACOs had shared losses totaling approximately $4.0 million. Program savings were driven, in part, by reductions that Pioneer ACOs generated in hospital admissions and readmissions." Montefiore Medical Center said it achieved the highest financial performance among the 32 Pioneer ACOs.

Get Involved

Register now to become a ROCC member or see the current list of ROCC Member Institutions.

Subscribe to the ROCC Newsletter

Receive updates on the Research on Care Community.

First Name:
Last Name:
Job Title: