Library of PCOR Resources

The Agency for Healthcare Research and Quality (AHRQ) provides this comprehensive Web library of patient-centered outcomes research (PCOR) resources to highlight the existing collection of PCOR projects conducted by public, private, nonprofit, and academic sources. The library of resources includes PCOR findings and evidence-based tools that have appeared in the published literature as well as studies and projects that are in progress.

Library Target Audiences

Researchers, clinicians, policymakers, patients and their families, and others seeking access to evidence-based health information.

Types of Resources

The Library of PCOR Resources includes:

• Systematic evidence syntheses and reviews of numerous health conditions
• Databases of published studies
• Databases of research grants and contracts
• Ongoing clinical trials of interest to patients and their families
• Ongoing research projects
• Data and reporting tools
• Research funding opportunities

Where These Resources Can Be Found

• Agency for Healthcare Research and Quality (AHRQ)
• National Institutes of Health
• National Library of Medicine
• Patient-Centered Outcomes Research Institute
• Department of Veterans Affairs Evidence Synthesis Program

Agency for Healthcare Research and Quality (AHRQ)

• AHRQ's Effective Health Care Program: provides access to systematic evidence reviews on the benefits and risks of prevention, diagnoses, and treatments for different health conditions. Users can nominate research topics, provide feedback on draft research reports, and read about related AHRQ grants and contracts.
• Detailed information on AHRQ’s grants are available on the National Institutes of Health’s RePORTER site, including grant type, project period, fiscal year, institution, State, principal investigator, RFA/PA, and abstract text. To display the distribution of grants across the United States since 2015, AHRQ created the Grants by State data visualization that presents the AHRQ grant data included in NIH RePORTER.

National Institutes of Health (NIH)

Health Services Research Information Central provides links to search queries from the National Library of Medicine resources; news; data, tools, and statistics; grants, funding, and fellowships; guidelines, journals and other publications and videos; key organizations and programs; legislation and policy; and meetings, conferences, and webinars. It is part of the NIH National Information Center on Health Services Research and Health Care Technology.

Research Portfolio Online Reporting Tools (RePORT) and RePORTER Database provides access to a variety of reporting tools, reports, data, and analyses of NIH research activities. The RePORTER (RePORT Expenditures and Results) module on the RePORT Web site is an electronic tool that allows users to search a repository of NIH-funded research projects and access publications and patents resulting from NIH funding.

National Library of Medicine (NLM)

ClinicalTrials.gov provides patients, their family members, health care professionals, researchers, and the public with easy access to information on publicly and privately supported clinical studies on a wide range of diseases and conditions conducted around the world.

• It contains information about medical studies in human volunteers.
• Most of the records describe clinical trials (also called interventional studies).
• Other records describe observational studies and programs providing access to investigational drugs outside of clinical trials (expanded access).

Background: ClinicalTrials.gov was created as a result of the Food and Drug Administration Modernization Act of 1997 (FDAMA); the ClinicalTrials.gov requirements were expanded after Congress passed the FDA Amendments Act of 2007 (FDAAA). FDAAA requires the submission of results for certain trials. This led to the development of the ClinicalTrials.gov results database, which contains information on study participants and a summary of study outcomes, including adverse events. The results database was made available to the public in September 2008. FDAAA also established penalties for failing to register or submit the results of trials.

Health Services Research Projects in Progress (HSRProj) database contains descriptions of more than 33,000 current and recently completed health services research projects funded by Government and State agencies, foundations, and private organizations, including the Patient-Centered Outcomes Research Institute. Established in the early 1990s, the database focuses on projects as they are funded. Records provide an abstract describing the project, as well information about the supporting and performing organizations. The site supports browsing of most recently funded projects. Records also include MeSH terms for the project descriptions, thereby supporting cross-referencing to searches of related literature in PubMed.

PubMed comprises more than 25 million citations of biomedical literature from MEDLINE, life science journals, and online books. Citations may include links to full-text content from PubMed Central (the National Library of Medicine's free full-text archive) and publisher Web sites. The site includes a variety of search tools and other utilities, including free, easily accessible tutorials to support effective search and retrieval. A pre-set query structure for literature and projects (PubMed, HSRProj, and ClinicalTrials.gov) that would inform comparative effectiveness research may be found at www.nlm.nih.gov/nichsr/cer/cerqueries.html.

PubMed Health provides integrated access to over 18,000 clinical effectiveness reviews, including summary information and full technical reports, for consumers and clinicians. The reviews in PubMed Health are derived from systematic reviews of clinical trials. PubMed Health also simultaneously searches PubMed to identify systematic review articles on the topic searched.

PubMed Health includes information from:

• Agency for Healthcare Research and Quality (AHRQ) (U.S.)
• Canadian Agency for Drugs and Technologies in Health (CADTH) (Canada)
• Centre for Reviews and Dissemination (CRD) (U.K.)
• Cochrane (U.K.)
• Department of Veterans Affairs' Evidence-based Synthesis Program from the Veterans Health Administration R&D (VA ESP) (U.S.)
• German Institute for Quality and Efficiency in Health Care (IQWiG) (Germany)
• National Cancer Institute (NCI) (U.S.)
• National Institute for Health and Care Excellence Guidelines Program (NICE) (U.K.)
• National Institute for Health Research (NIHR) Health Technology Assessment Programme (NIHR Programme) (U.K.)
• Oregon Health and Science University's Drug Effectiveness Review Project (DERP Clearinghouse [login required]) (U.S.)
• Swedish Council on Health Technology Assessment (SBU) (Sweden)

Patient-Centered Outcomes Research Institute (PCORI)

PCORI Research and Results Database is a searchable database of the research funded through PCORI, including results and associated work products for professionals and consumers (when available), and links to information on PCORI and its research methodologies. The home page displays project titles, year awarded, organization, and State information for the work funded in a tabular format. From here, users can also select "Map of Awards" to the right of the table to access a map of the United States where points designate PCORI-funded projects. This site also provides a search function.

Department of Veterans Affairs Evidence Synthesis Program (VA ESP)

VA ESP provides links to evidence synthesis reports funded by the Veterans Affairs (VA) Health Services Research and Development Program and the Quality Enhancement Research Initiative (QUERI) Program to provide timely and accurate syntheses of targeted health care topics of particular importance to clinicians, managers, and policymakers as they work to improve the health and health care of veterans.

Evidence Synthesis Program (ESP) reports are conducted to inform VA policy, such as the development of clinical practice guidelines, setting directions for future research to address gaps in knowledge, identifying the evidence to support VA performance measures, and rationalizing drug formulary decisions.

To search this site it is helpful to select the red "View Published Reports" button on the right side of the screen. This page will then display "All Completed ESP Reports." You may search for specific topics using the "Search Reports" text box. A listing of reports under development can be found by selecting the green "ESP Reports in Progress" button. From this list, users can browse all topics being reviewed by the VA ESP.

Background of PCOR Library

The AHRQ PCOR Library was established in response to the 2010 Patient Protection and Affordable Care Act, Title VI, Section 937. This Act mandates that AHRQ, in consultation with the National Institutes of Health (NIH), disseminate findings published by the Patient-Centered Outcomes Research Institute (PCORI) and other Government-funded entities that sponsor research on comparative clinical effectiveness. AHRQ will disseminate these findings to physicians, health care providers, patients, vendors of health information technology focused on decision support, appropriate professional associations, and Federal and private health plans.

The Patient Protection and Affordable Care Act directs AHRQ to "develop a publicly available resource database." However, to ensure that AHRQ is providing the most up-to-date information and making the best use of resources, The AHRQ PCOR Library provides direct links to relevant PCOR resources.