Health Outcomes Core Library Recommendations, 2011
Compiled by AcademyHealth
Funded by the National Library of Medicine
At the request of the National Information Center for Health Services Research and Health Care Technology (NICHSR) at the National Library of Medicine (NLM), AcademyHealth has updated a list of books, journals, and Websites intended to serve as the basis of a core health outcomes collection or library. Since that list was originally created in mid-2004, the field of health outcomes has expanded. The traditional role of the library and librarian has changed as well. Those who used to rely on the library as their sole source for information now look to the Internet to locate resources. As technology has improved, libraries have evolved to meet the needs of their consumers. With that in mind, NLM asked AcademyHealth to update the health outcomes list, focusing on core (essential/indispensible) health outcomes materials—books , journals (print and online), bibliographic databases, and select electronic resources such as alerts, blogs, newsletters, and Websites.
What are Health Outcomes?
Outcomes research seeks to understand the results of particular health care practices and interventions and relies on instruments designed and validated (increasingly in patient populations) to measure results experienced by people who receive particular health care practices and interventions. Results include effects that people experience and care about, such as change in the ability to function and in feelings of well-being. Common measure variables in outcomes research include health-related quality of life as well as mortality. By linking the care people get to the outcomes they experience, outcomes research has become the key to developing better ways to monitor and improve the quality of care1.
Health and healthcare intersect with so many topics, ranging from quality, to evidence-based practice, to disparities, to comparative health systems, etc., that a concise, core list could not encompass all of these topics. After input from AcademyHealth’s Health Services Research Advisory Committee, a panel of eleven librarians, and AcademyHealth and NLM project staff, we focused this document on general domestic health outcomes issues.
As researchers and consumers need to access specific resources to supplement their analyses and develop a solid base of evidence, librarians can direct them to other, topic-specific primary sources of information. For librarians it is becoming increasingly important to access numerous sources for health services research. In their role as information broker, librarians sift through the myriad resources available, directing their consumers to the appropriate health policy information. To paraphrase several librarians, there was a time when librarians were the gatekeepers. Now, with the Internet and the ease of accessing information, the gate is wide-open. It is the librarian’s job to guide individuals to the correct path. Librarians look at the world of information and provide the filters, helping their customers—whether they are students, academics, researchers, or the general public—find the information they need.
Librarians and health services research/health policy experts from academic institutions, health policy centers, non-profit organizations, and federal agencies provided invaluable input to this project. Using NLM and AcademyHealth staff recommendations, and drawing on an extensive AcademyHealth contacts, eleven librarian experts (librarian panel) and ten outcomes experts (outcomes panel) were identified to develop and review the resource list. (Please refer to Section Four of this report for a list of the experts.)
Using the definition on page one as a guide, librarian panelists and staff culled through library collections and the Internet to develop lists of domestic resources The panelists' search entailed looking at resources they considered to be classics, textbooks, items with high request/circulation rates, reviews on various Websites (i.e., Doody's Core Titles), materials frequently cited, and their professional recommendations. Staff tallied recommendations from the librarian panelists and created four draft lists – books, journals, bibliographic databases, and electronic resources – for review and discussion.
To be considered as a book or a journal, a resource had to be in print or accessible on the Internet, and readily available, for example, via looking in WorldCat and locating a local lending library. To further assist panelists with their review, the 2009 Journal Citation Reports® (JCR) impact factor and immediacy index was provided for the journals panelists suggested. As noted on the JCR’s Website, “the impact factor is a measure of the frequency with which the average article in a journal has been cited in a particular year or period. The annual Journal Citation Reports impact factor is a ratio between citations and recent citable items published. The immediacy index is calculated by dividing the number of citations published in a given year by the number of articles published in that year. Note that the index is a per-article average.”
NLM and AcademyHealth convened the librarian panel via web conference on March 10, 2011. Prior to the web meeting, participants received the following four documents for review:
- Draft health outcomes core books (95 titles)
- Draft health outcomes and journals (78 titles)
- Draft bibliographic databases (25 suggestions)
- Draft select electronic resources (86 suggestions).
At the meeting the librarian panel discussed each resource and then voted on whether or not each resource should be included in the core list. Ten panelists participated in the meeting. Any suggestion that received six or more votes was automatically left on the list for review by the second panel. In a few instances, suggestions receiving less than six votes were left on the list for consideration by the outcomes panel. (Neither AcademyHealth nor NLM staff voted.) The librarians had previously (during the health policy module) agreed on the following categories:
- bibliographic databases
- select electronic resources (includes alerts, blogs, newsletters, and Websites).
After the meeting, staff revised the lists and re-circulated them electronically to the librarian panel for final review and comment.
Once all of the librarians’ comments were incorporated, staff shared the revised lists with the outcomes panel for review and comment. Input from the outcomes panel was merged with input from the librarian panel to develop the final core library module recommendations contained in Section Two of this report.
How to Use This List
This list of resources is not intended to be a comprehensive catalog of health policy resources, but rather, to provide a set of core, authoritative domestic resources considered valuable by librarians, policy experts, and those interested in the fields of health services research and health policy.
Recent health reform legislation has resulted in a continuously evolving policy landscape; thus, the field is growing rapidly. We recommend that users of these lists search for updated versions of the resources cited here in order to ensure they are accessing the most recent information. Further, we suggest using these lists as an initial guide, and that researchers seek out a librarian for in-depth research assistance.
Librarians may wish to utilize this module by choosing specific content areas that will benefit their specific library needs. Likewise, faculty developing new courses may look to this list for suggested readings.
Core Health Outcomes Books
A Note to the Reader: The following list of core books in health outcomes is alphabetized by last name of the primary author. As of this publication date, all items listed are available either from the publisher's Website or via a local library. We recommend periodically checking the publisher's Website for the most recent editions available as well as for current pricing information.
- Anderson R, Rice TH, Kominski GF, Abdelmonem AA, foreword by Rosenstock L. Changing the U.S. health care system: key issues in health services, policy, and management, 4th edition. Jossey-Bass; 2013.
- Barrick IJ. Transforming health care management: integrating technology strategies. Sudbury, MA: Jones & Bartlett Learning; 2009.
- Berger ML, Bingefors K, Hedblom EC, Pashos CL, Torrance GW. Health care costs, quality and outcomes. ISPOR book of terms. Lawrenceville, NJ: ISPOR; 2000.
- Block DJ. Healthcare outcomes management: strategies for planning and evaluation. Sudbury, MA: Jones & Barlett Learning; 2006.
- Bowling A. Research methods in health: investigating health and health services, 3rd edition. Open University Press; 2009.
- Bowling A. Measuring health: a review of quality of life measurement scales, 3rd edition. Maidenhead, UK: Open University Press; 2005.
- Bowling A. Measuring disease: a review of disease-specific quality of life measurement scales, 2nd edition. Ballmoor, UK: Open University Press; 2001.
- Bowling A, Shah, E., editors. Handbook of health research methods: investigation, measurement, and analysis. Maidenhead, UK: Open University Press; 2005.
- Cerrito P, editor. Cases on health outcomes and clinical data mining: studies and frameworks. Hershey, PA: Medical Information Science Reference; 2010.
- Chiappelli F, editor. Evidence based practice: toward optimizing clinical outcomes. NY: Springer; 2010.
- Chumney ECG, Simpson KN. Methods and design for outcomes research. Bethesda, MD: American Society of Health System Pharmacists; 2006.
- Dlugacz YD. Measuring health care: using quality data for operational, financial, and clinical improvement. Jossey-Bass; 2006.
- Dlugacz YD. Value-based health care: linking finance and quality. San Franciso, CA; Jossey-Bass; 2010.
- Donabedian A. An introduction to quality assurance in health care. New York: Oxford University Press; 2002.
- Donabedian A. Exploration in quality assessment and monitoring, Volume 1. The Definition of quality and approaches to its assessment. Ann Arbor, MI: Health Administration Press; 1980.
- Donabedian A. Exploration in quality assessment and monitoring, Volume 2. The criteria and standards of quality. Ann Arbor, MI: Health Administration Press; 1982.
- Donabedian A. Exploration in quality assessment and monitoring, Volume 3. The methods and findings of quality assessment and monitoring: an illustrated analysis. Ann Arbor, MI: Health Administration Press; 1985.
- Drummond M, McGuire A, editors. Economic Evaluation in Health Care: Merging Theory with Practice. Oxford: Oxford University Press; 2001.
- Fairclough DL. Design and analysis of quality of life studies in clinical trials. 2nd ed. Boca Raton: Chapman & Hall/CRC Press, 2010.
- Farley DO, Ridgely MS, Mendel P, Teleki SS, Damberg CL, Shaw R, Greenberg MD, Haviland AM, Hussey PS, Dembosky JW, Yu H, Brown JA, Pham C, Ashwood JS. Assessing patient safety practices and outcomes in the U.S. health care system. RAND Corporation: 2009. Available online: http://www.rand.org/content/rand/pubs/technical_reports/TR725.html
- Fayers PM, Machin D. Quality of life: the assessment, analysis and interpretation of patient-reported outcomes, 3rd ed. Chichester, England: Wiley, 2016.
- Fink A. Evaluation fundamentals: insights into program effectiveness, quality, and value. 3rd edition. Thousand Oaks, CA: Sage Publications: 2004.
- Foundation for Health Services Research. Health outcomes research: a primer. Washington, DC: Foundation for Health Services Research; 1994. Available online: http://www.academyhealth.org/files/publications/healthoutcomes.pdf
- Gliklich RE, Dreyer NA, editors. Registries for evaluating patient outcomes: a user’s guide. 2nd ed. AHRQ Pub. No. 10-EHC049. Rockville, MD. AHRQ Sept 2010. Available online: http://www.effectivehealthcare.ahrq.gov/ehc/products/74/531/Registries%202nd%20ed%20final%20to%20Eisenberg%209-15-10.pdf
- Gold MR, Siegel JE, Russell LB, Weinstein MC. Cost-effectiveness in health and medicine. Oxford University Press; 1996. Available online: http://www.effectivehealthcare.ahrq.gov/ehc/products/74/531/Registries%202nd%20ed%20final%20to%20Eisenberg%209-15-10.pdf
- Hunink M, Glasziou P, Siegel J, et al. Decision Making in Health and Medicine: Integrating Evidence and Values. Cambridge: Cambridge University Press; 2001.
- Institute of Medicine. Unequal treatment: confronting racial and ethnic disparities in health care. Washington, DC: National Academies Press; 2003. Available online: http://www.nap.edu/catalog/10260/unequal-treatment-confronting-racial-and-ethnic-disparities-in-health-care
- Institute of Medicine. Crossing the quality chasm: a new health system for the 21st century. Washington, DC: National Academy Press; 2001. Available online: http://www.nap.edu/catalog/10027/crossing-the-quality-chasm-a-new-health-system-for-theSpecial note: This title is part of a series produced by the Institute of Medicine called the Quality Chasm Series: HealthCare Quality Reports from the Institute of Medicine, an eleven volume set. Please visit http://www.nap.edu/catalog/21895/quality-chasm-series-health-care-quality-reports for additional information.
- Institute of Medicine. For the public's health: the role of measurement in action and accountability. Washington, DC: National Academies Press; 2011. Available online: http://www.nap.edu/catalog/13005/for-the-publics-health-the-role-of-measurement-in-action
- Institute of Medicine. Initial national priorities for comparative effectiveness research. Washington, DC: National Academies Press; 2009. Available online: http://www.nap.edu/catalog/12648/initial-national-priorities-for-comparative-effectiveness-research
- Institute of Medicine. The healthcare imperative: lowering costs and improving outcomes: workshop series summary. Washington, DC: National Academies Press; 2010. Available online: http://books.nap.edu/catalog.php?record_id=12750
- Kohn L, Corrigan J, Donaldson M, editors. Institute of Medicine. To err is human: building a safer health system. Washington, DC: National Academies Press; 2000. Available online: http://www.nap.edu/catalog/9728/to-err-is-human-building-a-safer-health-system
- Young P, Olsen L, McGinnis J, editors. Institute of Medicine. Value in health care: accounting for cost, quality, safety, outcomes, and innovation: -a workshop summary. Washington, DC: National Academies Press; 2010. Available online: http://www.nap.edu/catalog/12566/value-in-health-care-accounting-for-cost-quality-safety-outcomes
- Miller W, Robinson L, Lawrence R, editors. Institute of Medicine. Valuing health for regulatory cost-effectiveness analysis. Washington, DC: National Academies Press; 2006. Available online: http://www.nap.edu/catalog/11534/valuing-health-for-regulatory-cost-effectiveness-analysis
- Kane RL, Radosevich DM. Conducting health outcomes research. Sudbury, MA: Jones & Bartlett Learning, 2011.
- Kane RL. Understanding health care outcomes research, 2nd edition. Jones & Bartlett Learning; 2006.
- Kovner AR, Fine DJ, D'Aquila R. Evidence-based management in healthcare. Chicago: Health Administration Press, 2009.
- Kronenfeld JJ. Access, quality and satisfaction with care: concerns of patients, providers and insurers. Amsterdam, Boston: Elsevier; 2007.
- Lipscomb J, Gotay CC, Snyder C, editors. Outcomes assessment in cancer: measures, methods, and applications. NY: Cambridge University Press; 2005.
- McDowell I. Measuring health: a guide to rating scales and questionnaires, 3rd edition. Oxford University Press; 2006.
- Minkler M, Wallerstein N, editors. Community based participatory research for health: from process to outcomes, 2nd edition. Jossey-Bass; 2008.
- National Research Council. Accounting for health and health care: approaches to measuring the sources and costs of their improvement. Washington, DC: National Academies Press; 2010. Available online: http://www.nap.edu/catalog/12938/accounting-for-health-and-health-care-approaches-to-measuring-the
- Newhouse RP, Poe S. Measuring patient safety. Sudbury, MA; Jones & Bartlett Learning; 2005.
- Preedy V, Watson RR, editors. Handbook of disease burdens and quality of life measures. New York: Springer; 2010.
- Reason J. Human Error. Cambridge, Cambridge University Press; 1990.
- Schlander M. Health technology assessment by the National Institute for Health and Clinical Excellence: a qualitative study. NY: Springer; 2010.
- Sorbero ME, Farley DO, Mattke S, Lovejoy SL. Outcomes measures for effective teamwork in inpatient care. Santa Monica, CA: RAND; 2008.
- Spilker B, editor. Quality of life assessments in clinical trials. New York: Raven Press; 1996.
- Streiner DL, Norman GR. Health measurement scales: a practical guide to their development and use, 5th edition. Oxford University Press; 2015.
- Walburg J, Bevan H, Wilderspin J, Lemmens K, editors. Performance management in health care: improving patient outcomes, an integrated approach. Routledge; 2006.
- Walters SJ. Quality of life outcomes in clinical trials and health-care evaluation: a practical guide to analysis and interpretation. Wiley; 2009.
- Wachter RM. Understanding patient safety. McGraw Hill, 2007.
- Weiss, NS. Clinical epidemiology: the study of the outcome of illness, 3rd edition. NY: Oxford University Press; 2006.
- World Health Organization. The global burden of disease: 2004 update. Geneva: World Health Organization; 2008. Publisher url: http://www.who.int/healthinfo/global_burden_disease/2004_report_update/en/
Core Health Outcomes Books
A Note to the Reader: The following is a list of journal in general, domestic health outcomes. Journals marked with a single asterisk (*) are considered to be leading medical journals that contain articles on health outcomes and should be considered as core to all health-related libraries.
Additional clinical and specialty journals, which may contain articles of interest contingent upon the specific outcome under study, can be found in the Abridged Index Medicus (AIM or core clinical) The Abridged Index Medicus journal title listing. This list is available online in PubMed® as a search subset limit called "Core Clinical Journals." The hardcopy publication ceased with the December 1997 issue. Please visit http://www.nlm.nih.gov/bsd/aim.html for additional information.
- Academic Medicine
- American Journal of Epidemiology
- American Journal of Medicine
- American Journal of Nursing
- American Journal of Public Health
- Annals of Internal Medicine*
- Applied Research in Quality of Life
- Archives of Internal Medicine
- BMJ Quality & Safety (previously known as Quality & Safety in Health Care)
- Health Affairs
- Health and Quality of Life Outcomes
- Health Economics
- HSR/Health Services Research
- International Journal for Quality in Health Care
- International Journal of Technology Assessment in Health Care
- JAMA – Journal of the American Medical Association*
- Joint Commission Journal on Quality and Safety
- Journal of Clinical Epidemiology
- Journal of Health Services Research & Policy
- Medical Care Research and Review
- Medical Care: Official Journal of the Medical Care Section, APHA
- Medical Decision Making
- New England Journal of Medicine*
- Quality of Life Research
- Value in Health
*Journals marked with an asterisk are considered to be leading medical journals that contain articles on health outcomes and should be considered as core to all health-related libraries.
Core Health Outcomes Bibliographic Databases
A Note to the Reader: Below please find a list of suggested core bibliographic databases in health outcomes. The content in the majority of these databases expands beyond health outcomes. Individuals using these databases should tailor their searches to their specific needs.
Centre for Reviews and Dissemination (CRD) Databases:
DARE (Database of Abstracts of Review of Effects)
Health Technology Assessments (HTA)
DARE contains abstracts of quality assessed systematic reviews and details of all Cochrane reviews and protocols. (Free.)
HTA contains details of completed and ongoing health technology assessments from around the world. Unlike DARE and NHS EED, the abstracts in the database are descriptive rather than critical. The HTA database provides free access to information about technology assessments carried out around the world. HTA contains records of ongoing and completed projects conducted by the 47 member agencies of International Network of Agencies for Health Technology Assessment (INAHTA) as well as records reporting completed technology assessments carried out by other HTA organizations. (Free.)
|CINAHL® (Cumulative Index to Nursing and Allied Health Literature)||http://www.ebscohost.com/cinahl/||CINAHL® provides abstracts of articles from over 924 journals (and some full-text documents from nursing organizations). Primarily covering nursing issues, the database also covers the topics of allied health and health sciences It provides patient perspective, but the user must search for "methods" to retrieve articles that would relate to health services research methods. (Subscription.)|
|Cochrane Library||http://www.thecochranelibrary.com/view/0/index.html||The Cochrane Library provides evidence for health care decision making. Six databases provide access to resources such as reviews, methods studies, technology assessments, and economic evaluations. (Subscription.)|
|Embase™||https://www.elsevier.com/solutions/embase-biomedical-research||Embase™ contains 23 million indexed records covering over 7,500 current, mostly peer-reviewed, journals in the biomedical sciences. (Subscription.)|
|Health and Psychosocial Instruments (HaPI)||http://www.ebscohost.com/academic/health-and-psychosocial-instruments-hapi||Health and Psychosocial Instruments (HaPI) is a database that provides access to information on approximately 15,000 measurement instruments (i.e. questionnaires, interview schedules, checklists, coding schemes, rating scales, etc.) in the fields of health and psychosocial sciences. (Subscription.)|
|Health Economics Evaluations Database (HEED)||http://onlinelibrary.wiley.com/book/10.1002/9780470510933||HEED equips health professionals with the tools to make informed decisions about medicines and other healthcare interventions by providing comparative analysis of costs and consequences. It contains information on studies of cost-effectiveness and other forms of economic evaluation of medicines and other treatments and medical interventions. HEED also includes, in bibliographic detail, entries from the Wellcome and Battelle databases of economic evaluation literature. (Subscription.)|
|JSTOR||http://about.jstor.org/||JSTOR is a not–for–profit service that helps scholars, researchers, and students discover, use, and build upon a wide range of content in a trusted digital archive of over one thousand academic journals and other scholarly content. It uses information technology and tools to increase productivity and facilitate new forms of scholarship. (Subscription.)|
|MEDLINE®/PubMed||http://www.nlm.nih.gov/databases/databases_medline.html||MEDLINE® is the U.S. National Library of Medicine's premier bibliographic database covering the fields of medicine, nursing, dentistry, veterinary medicine, the health care system, and the preclinical sciences. PubMed. (Free). PubMed is the NLM platform for searching MEDLINE® and other content.|
|New York Academy of Medicine's Grey Literature Report||http://www.greylit.org/||The Grey Literature Report is a bimonthly publication of The New York Academy of Medicine Library, alerting readers to new grey literature publications in health services research and selected public health topics. In addition to this alert service, all resources are added and indexed in the NY Academy of Medicine's Online Catalog. (Free.)|
|PsycInfo||http://www.apa.org/pubs/databases/psycinfo/index.aspx||PsycINFO is an abstract database that provides systematic coverage of the psychological literature from the 1800s to the present. (Subscription.)|
|Scopus||http://www.scopus.com/home.url||According to the Scopus homepage, this is the largest abstract and citation database of research literature and quality web sources covering nearly 18,000 titles from more than 5,000 publishers. Scopus covers the same source titles as MEDLINE and Embase™. Institutional access is required to fully benefit from Scopus. Further, Scopus provides the number of citations of the article in Scopus and alerts to let one know when the article has been cited in Scopus. It also provides breakdowns (i.e., applicable numbers) of a retrieval set by year, authors, subjects, and document types and provides links to Web resources and patents matching the search criteria. It provides a list of references included in articles and, for applicable records, includes EMTREE Drug Terms and Medical Terms and MESH terms. Scopus features an Author Identifier to automatically match an author’s published research including the h-index; a Citation Tracker to find, check and track citations in real-time; an Affiliation Identifier to automatically identify and match an organization with all its research output; a Journal Analyzer to provides insight into journal performance and interoperability with SciVerse ScienceDirect, Reaxis and ProQuest’s CSA Illumina. (Subscription.)|
|Web of Science||http://thomsonreuters.com/products_services/science/science_products/a-z/web_of_science/||Web of Science® provides access to the world's leading citation databases. Multidisciplinary content covers over 10,000 of the highest impact journals worldwide, including Open Access journals and over 110,000 conference proceedings with current and retrospective coverage in the sciences, social sciences, arts, and humanities, and coverage available to 1900. (Subscription.)|
Health Outcomes Core Select Electronic Resources
A Note to the Reader: Below please find select general, domestic health outcomes electronic resources--alerts, blogs, newsletters, and Websites. We suggest using this list as a guide, utilizing the resources for informative purposes. (The list primarily focuses on domestic resources with a few exceptions.) We recommend deferring to your librarian for assistance with research questions.
|Site Name||URL||Description||Type of Resource|
|AcademyHealth||http://academyhealth.org/||AcademyHealth is the professional home for health services researchers, policy analysts, and practitioners, and is a non-partisan resource for the health services research and policy communities. AcademyHealth produces a wealth of publications, ranging from newsletters to issue briefs to monographs and special reports. Its publications are key resources in several substantive areas, including health care financing and organization, purchasing, quality improvement, and rural, state, and international health policy.||Website|
|Agency for Healthcare Research and Quality (AHRQ)||http://www.ahrq.gov/||AHRQ's Website provides evidence-based information on health care outcomes, quality, cost, use, and access. The site includes access to data, analyses, and papers funded by AHRQ as well as access to programs such as Centers for Education and Research on Therapeutics; Consumer Assessment of Healthcare Providers and Systems (CAHPS); the Effective Health Care Program; Patient Safety Network (PSNet); Developing Evidence to Inform Decisions about Effectiveness (DEcIDE) Network; reports, for example, National Healthcare Quality Report and Research Activities, a digest of research findings that have been produced with AHRQ support. AHRQ also has 14 Evidence-based Practice Centers (EPCs). The EPCs review all relevant scientific literature on clinical, behavioral, and organization and financing topics to produce evidence reports and technology assessments. These reports are used for informing and developing coverage decisions, quality measures, educational materials and tools, guidelines, and research agendas. The EPCs also conduct research on methodology of systematic reviews.||Website|
|Centers for Disease Control and Prevention (CDC)||http://www.cdc.gov/nchs/hus.htm||The Centers for Disease Control and Prevention (CDC) is an online source for credible health information. Individuals can access data such as Health, United States, an annual report on trends in health statistics as well as The State of Aging and Health in America Report, a report series where professionals can get current data at the national, state, and selected local levels for 15 key indicators of older adult health. Additionally, the Health-Related Quality of Life section provides a comprehensive set of health-related quality of life tools and resources and access to the Behavioral Risk Factor Surveillance System and Youth Behavioral Risk Surveillance System.||Website/Data|
|Centers for Medicare & Medicaid Services (CMS)||https://www.cms.gov/Research-Statistics-Data-and-Systems/Research-Statistics-Data-and-Systems.html||The Centers for Medicare & Medicaid Services is a federal agency that provides access to programs, reports, and information on Medicare, Medicaid, CHIP, and HIPAA. The various Quality Initiatives touch every aspect of the healthcare system. Some initiatives focus on publicly reporting quality measures for nursing homes, home health agencies, hospitals, and kidney dialysis facilities. The Website provides access to various, complete data sets and surveys, for example, the health outcomes survey and the outcome and assessment information set, Hospital Compare, Nursing Home, Home Health and others.||Website|
|Clinicaltrials.gov||http://clinicaltrials.gov/||A service of the U.S. National Library of Medicine, ClinicalTrials.gov is a registry of federally and privately supported clinical trials conducted in the United States and around the world. ClinicalTrials.gov provides information about a trial's purpose, who may participate, locations, and phone numbers for more details.||Website|
|Commonwealth Fund||http://www.commonwealthfund.org/||The Commonwealth Fund is a private foundation that aims to promote a high performing health care system that achieves better access, improved quality, and greater efficiency, particularly for society's most vulnerable, including low-income people, the uninsured, minority Americans, young children, and elderly adults. Access reports, data, interactive maps, surveys, and case studies on a variety of health quality and health performance issues from the Website.||Website|
|County Health Rankings/Health Outcomes||http://www.countyhealthrankings.org/oregon/outcomes-components-ranking||The County Health Rankings show the health of a community depends on many different factors – ranging from individual health behaviors, education and jobs, to quality of health care, to the environment. This collection of 50 reports – one per state – helps community leaders see that where we live, learn, work, and play influences how healthy we are and how long we live. The Robert Wood Johnson Foundation is collaborating with the University of Wisconsin Population Health Institute to develop these Rankings for each state’s counties.||Website/Data|
|Dartmouth Atlas of Health Care||http://www.dartmouthatlas.org||For more than 20 years, the Dartmouth Atlas Project has documented variations in how medical resources are distributed and used in the United States. The project uses Medicare data to provide information and analysis about national, regional, and local markets, as well as hospitals and their affiliated physicians. Access data by region, by hospital, and by topic. Briefs, case studies, research articles, atlases and reports are also available.||Website|
|Data.gov||http://www.data.gov/||Data.gov increases the ability of the public to easily find, download, and use datasets that are generated and held by the Federal Government. Data.gov provides descriptions of the Federal datasets (metadata), information about how to access the datasets, and tools that leverage government datasets. The data catalogs will continue to grow as datasets are added. Federal, Executive Branch data are included in the first version of Data.gov.||Website|
|Department of Veterans Affairs Health Services Research & Development||http://www.hsrd.research.va.gov/ and http://www.queri.research.va.gov/||
The VA Health Services Research and Development Service (HSR&D) pursues research that underscores all aspects of VA healthcare: patient care, care delivery, health outcomes, cost, and quality. HSR&D research also addresses critical issues for Veterans returning home from Iraq and Afghanistan with conditions that may require care over their lifetimes.
VA/HSR&D's Quality Enhancement Research Initiative (QUERI) was launched in 1998 as part of a system-wide transformation aimed at improving the quality of healthcare for Veterans. QUERI contributes to this effort by implementing research findings and innovations into routine clinical practice.
|Health Resources and Services Administration (HRSA)||http://www.hrsa.gov/index.html||HRSA, an agency of the U.S. Department of Health and Human Services, is the primary Federal agency for improving access to health care services for people who are uninsured, isolated or medically vulnerable. This website provides a variety of health outcomes-related data and statistics.||Website|
|Health Services and Sciences Research Resources (HSRR)||http://wwwcf.nlm.nih.gov/hsrr_search/index.cfm||The Health Services and Sciences Research Resources (HSRR) database was designed for health care researchers and health sciences librarians seeking data resources used in health services research, the behavioral and social sciences and public health. Users may examine and compare characteristics of health-related research tools and link to additional research resources.||Website/Data|
|Health Services Research Information Central; CER section||http://www.nlm.nih.gov/hsrinfo/cer.html||Health Services Research Information Central (HSRIC) provides links to data, tools, and statistics; publications; key organizations, and programs that focus on comparative effectiveness research, evidence based practice, and health technology assessment.||Website|
|Healthy People 2020||http://www.healthypeople.gov/2020/default.aspx||The Healthy People.gov Website provides science-based, 10-year national objectives for improving the health of all Americans. Healthy People 2020 identifies nearly 600 objectives with more than 1,300 measures to improve the health of all Americans. To monitor progress toward achieving individual objectives, Healthy People relies on data sources derived from a national census of events (like the National Vital Statistics System) and Nationally representative sample surveys (like the National Health Interview Survey). The Website provides resources and recommendations for how to achieve each objective.||Website|
|Hospital Compare||https://www.medicare.gov/hospitalcompare/search.html||Hospital Compare is a tool created by the Centers for Medicare & Medicaid Services (CMS), an agency of the U.S. Department of Health and Human Services and the Hospital Quality Alliance (HQA). Hospital Compare displays rates for Process of Care measures that show whether or not hospitals provide some of the care that is recommended for patients being treated for a heart attack, heart failure, pneumonia, asthma (children only) or patients having surgery. Hospitals voluntarily submit data from medical records about the treatments their patients receive for these conditions. The data is from patients with Medicare, those enrolled in Medicare health plans, and those who do not have Medicare.||Website|
|National Academy of Medicine (formerly Institute of Medicine)||nam.edu/||The Institute of Medicine (IOM) is an independent, nonprofit organization that works outside of government to provide unbiased and authoritative advice to decision makers and the public. The Website provides free access to IOM reports, organized by topic or found using a free text search, that span a variety of areas involving with health outcomes.||Website|
|International Society for Pharmacoeconomics and Outcomes Research (ISPOR)||http://www.ispor.org/||The International Society for Pharmacoeconomics and Outcomes Research (ISPOR) promotes the science of pharmacoeconomics (health economics) and outcomes research (the scientific discipline that evaluates the effect of health care interventions on patient well-being including clinical outcomes, economic outcomes, and patient-reported outcomes) and facilitates the translation of this research into useful information for healthcare decision-makers to ensure that society allocates scarce health care resources wisely, fairly and efficiently. Access reports, books, presentations, etc., on health outcomes from the Website.||Website|
|International Society for Quality of Life Research (ISOQOL)||http://www.isoqol.org||The International Society for Quality of Life Research (ISOQOL) is an international professional society that aims to advance the scientific study of health-related quality of life and other patient-centered outcomes to identify effective interventions, enhance the quality of health care and promote the health of populations. Membership is required to gain access to online publications. The Website also lists links to publications for purchase written by society members.||Website|
|Inter-University Consortium for Political and Social Research (ICPSR) at the University of Michigan||http://www.icpsr.umich.edu/icpsrweb/ICPSR/||Inter-University Consortium for Political and Social Research (ICPSR) is an international consortium of ~700 academic institutions and research organizations. ICPSR provides leadership and training in data access, curation, and methods of analysis for the social science research community. ICPSR maintains a data archive of more than 500,000 files of research in the social sciences. It hosts 16 specialized collections of data in education, aging, criminal justice, substance abuse, terrorism, and other fields. A subscription is required to access some full data sets.||Website|
|Kaiser Family Foundation(KFF)/Kaiser Health News||http://www.kff.org and http://www.kaiserhealthnews.org||This Kaiser Family Foundation Website and newsletter provide information, news, and reports on a variety of health economics topics: Medicare, Medicaid/CHIP, prescription drugs, etc.||Website/Electronic Newsletter|
|MAPI Research Trust (MRT)||http://www.mapi-trust.org/home||MAPI Research Trust (MRT) provides comprehensive, up-to-date information services to those in the fields of patient-reported outcomes and pharmacoepidemiology. Access the free patient reported outcomes (PRO) newsletter and the PharmacoEpi and Risk Management (PRM) newsletter from the Website.||Website/Electronic Newsletter|
|Mathematica - Center for Healthcare Effectiveness||http://www.mathematica-mpr.com/chce/||The Mathematica Center on Health Care Effectiveness (CHCE) is a resource for policymakers, the public, and other stakeholders, offering broad-based expertise to provide objective evidence to inform today’s difficult health care decisions. Access reports and issue briefs on outcomes from the Website.||Website|
|Medical Outcomes Trust||http://www.outcomes-trust.org/||The Medical Outcomes Trust is a non-profit organization dedicated to improving health and health care by promoting the science of outcomes measurement. The Website provides links to survey instruments that can be used when conducting research on health outcomes. Users must request permission from the creator to use the instruments.||Website|
|Medicare Health Outcomes Survey||http://www.hosonline.org/||The Medicare Health Outcomes Survey Website provides current information on the progress of the Health Outcomes Survey (HOS) program and the full spectrum of Medicare HOS data and reports.||Website|
|National Bureau of Economic Research (NBER)||http://www.nber.org/||The National Bureau of Economic Research (NBER) is a private, non-profit, non-partisan research organization focused on promoting a greater understanding of how the economy works. The NBER'S Health Economics Program emphasizes studies on the economics of substance use, the economics of obesity, economic models of the determinants of health, and the determinants of the cost of medical care. Most papers require a subscription and/or a one-time fee. There is a free online bulletin on the economics of aging and health that includes reports and working papers—most requiring a subscription and/or one-time fee.||Website/Bulletin|
|National Cancer Institute- Outcomes Research||http://outcomes.cancer.gov/||The National Cancer Institute (NCI) outcomes research programs Websites provides online access to health outcomes tools, studies, and data.||Website/Data|
|National Center for Health Statistics (NCHS)||http://www.cdc.gov/nchs||The National Center for Health Statistics (NCHS) is a Federal agency. The agency’s Website provides access to reports, data, and statistics on a variety of health economics topics: health insurance, economics of access to health care, health care expenditures. Health Data Interactive is a tool that allows the user to take tables with national health statistics and customize them by age, gender, race/ethnicity, and geographic location to explore different trends and patterns (i.e., health insurance and access; health care use and expenditures).||Website/Data|
|National Committee for Quality Assurance (NCQA)/HEDIS||http://www.ncqa.org/tabid/59/default.aspx||The National Committee for Quality Assurance is a private, 501(c)(3) not-for-profit organization dedicated to improving health care quality. Publications and resources, including quality report cards and the Healthcare Effectiveness Data and Information Set (HEDIS), a tool used by more than 90 percent of America's health plans to measure performance on important dimensions of care and service, are available for purchase online.||Website/Data|
|National Guideline Clearinghouse (NGC)||http://www.guideline.gov/||
The National Guideline Clearinghouse (NGC) was originally created by AHRQ in partnership with the American Medical Association and the American Association of Health Plans (now America's Health Insurance Plans [AHIP]).
The NGC mission is to provide physicians and other health professionals, health care providers, health plans, integrated delivery systems, purchasers, and others an accessible mechanism for obtaining objective, detailed information on clinical practice guidelines and to further their dissemination, implementation, and use.
|National Information Center on Health Services Research and Health Care Technology (NICHSR)||http://www.nlm.nih.gov/pubs/factsheets/nichsr_fs.html||The National Information Center on Health Services Research and Health Care Technology (NICHSR) works closely with the Agency for Healthcare Research and Quality (AHRQ) to improve the dissemination of the results of health services research, with special emphasis on the growing body of evidence reports and technology assessments that provide organizations with comprehensive, science-based information on common, costly medical conditions and new health care technologies. The Website provides links to other federal health information sources i.e., HSRProj, HSR Information Central, and HSRR databases.||Website|
|National Institute for Health and Clinical Effectiveness (NICE)||http://www.nice.org.uk/||The National Institute for Health and Clinical Effectiveness (NICE) is a special health authority of the National Health Service (NHS) in England and Wales. NICE publishes guidelines in three areas: the use of health technologies within the NHS; clinical practice, and guidance for public sector workers. These guidelines focus on Health promotion and ill-health avoidance. The appraisals are based primarily on evaluations of efficacy and cost-effectiveness in various circumstances. The Website provides access to evidence-based publications, research recommendations, and clinical practice guidelines.||Website|
|National Quality Forum (NQF)||http://www.qualityforum.org/Home.aspx||The National Quality Forum (NQF) operates to improve the quality of American health care by: (1) Building consensus on national priorities and goals for performance improvement and working in partnership to achieve them; (2) Endorsing national consensus standards for measuring and publicly reporting on performance; and (3) Promoting the attainment of national goals through education and outreach programs. This site provides online access to health outcomes reports using a keyword search bar to aid in narrowing resource searches.||Website|
|National Quality Measures Clearinghouse (NQMC)||https://www.qualitymeasures.ahrq.gov/||
The National Quality Measures Clearinghouse is a database and Website for information on specific evidence-based health care quality measures and measure sets. NQMC is sponsored by AHRQ to promote widespread access to quality measures by the health care community and other interested individuals.
Its mission is to provide practitioners, health care providers, health plans, integrated delivery systems, purchasers and others an accessible mechanism for obtaining detailed information on quality measures, and to further their dissemination, implementation, and use in order to inform health care decisions. NQMC builds on AHRQ's previous initiatives in quality measurement, including the Computerized Needs-Oriented Quality Measurement Evaluation System (CONQUEST), the Expansion of Quality of Care Measures (Q-SPAN) project, the Quality Measurement Network (QMNet) project, and the Performance Measures Inventory (PMI).
|U.S. National Library of Medicine (NLM)/ HTA 101: Introduction to Health Technology Assessment||http://www.nlm.nih.gov and http://www.nlm.nih.gov/nichsr/hta101/ta10101.html||
The U.S. National Library of Medicine (NLM) is the world's largest medical library. The Library collects materials and provides information and research services in all areas of biomedicine and health care.
The HTA 101 text, authored by Clifford S. Goodman, PhD, was written in 2004. It provides an introduction to health technology assessment, covering fundamental concepts and issues including methodological validity and integrative methods.
|Patient-Reported Quality of Life Instruments Database||http://www.proqolid.org/||
The Patient-Reported Quality of Life Instruments Database (ProQolid), developed by Mapi Research Institute and managed by Mapi Research Trust (Lyon, France), aims to identify and describe Patient Reported Outcome (PRO) and Quality Of Life (QOL) instruments to help individuals choose appropriate instruments and facilitate access to them. (Free: This level is available to all ProQolid visitors at no charge.) For each instrument in the database, there are 14 categor
ies of basic information (e.g., author, objective, mode of administration, original language, existing translations, pathology, number of items, etc.; (Subscription: This level presents a greater degree of practical information on each instrument, most notably the author’s details and contact information, conditions of use, psychometric properties, etc., and, when available, a review copy of the original instrument, its translations, and a user manual.)
|Pew Charitable Trusts/Health||http://www.pewtrusts.org/our_work_category.aspx?id=184||Based on research and critical analysis, the Pew Health Group seeks to improve the health and well-being of all Americans. It advocates policies that reduce potentially dangerous health risks in consumer, medical and food products and services. Access reports covering a variety of topics pertaining to consumer product safety, food quality and nutrition, prescription drugs, and innovations in health science from the Website.||Website|
|PROMIS||http://www.nihpromis.org/default.aspx||The Patient-Reported Outcomes Measurement Information System (PROMIS) is a network of NIH-funded primary research sites and coordinating centers working collaboratively to develop a series of dynamic tools to reliably and validly measure patient-reported outcomes.||Website|
|PROQOLD||http://www.proqolid.org/||Developed by Mapi Research Institute and managed by Mapi Research Trust (Lyon, France), ProQolid aims to identify and describe PRO and QOL instruments to help one choose appropriate instruments and facilitate access to them. PROQOLD contains the largest bank of translated/culturally adapted PRO questionnaires (Some access is free; in-depth access requires a membership.)||Website/Data|
|RAND Health||http://www.rand.org/health.html||RAND Health research studies are coordinated through three programs and four strategic initiatives. The programs focus on long-standing core areas of RAND Health's policy research expertise: health care economics, finance, and organization; health promotion and disease prevention; and quality assessment and improvement. The Website provides access to briefs, reports, and newsletters covering topics in care quality, end-of-life care, and other topics involving health outcomes.||Website|
|Robert Wood Johnson Foundation||http://www.rwjf.org||The Website of the Robert Wood Johnson Foundation, a non-profit, grant-making, and research organization, provides access to reports and data on health economics topics such as health insurance, access to care, and health care and prescription drug costs.||Website|
|The Joint Commission||http://www.jointcommission.org/||The Joint Commission accredits and certifies more than 18,000 health care organizations and programs in the United States. Joint Commission accreditation and certification is recognized nationwide as a symbol of quality that reflects an organization’s commitment to meeting certain performance standards. Publication resources are available for purchase online.||Website|
|Urban Institute||http://www.urban.org||The Urban Institute compiles detailed state and national data on insurance coverage and analyzes Medicare, Medicaid, and health care reform options. The Website provides access to reports on various issues in health outcomes and health economics mainly focusing on insurance.||Website|
|WHO (World Health Organization) Patient Safety||http://www.who.int/patientsafety/en/||WHO Patient Safety aims to coordinate, disseminate and accelerate improvements in patient safety worldwide. Access reports and related documents as well as WHO patient safety news alerts from the Website.||Website/Alerting Service|
Section Three - Expert Panels
Table A: Librarian Expert Panel
University of Michigan, Health Sciences Library
Information Resources Center
Head of Reference & Research Services Health Sciences & Human Services Library
University of Maryland
Information Resources Center
Head, Selection and Acquisitions Section
National Library of Medicine
Associate Director for Education, Information, and Technology Services
George Washington University Medical Center
|Robert M Shapiro II
Clinical Reference Librarian
University of Kentucky, Medical Center Library
Oregon Health & Science University
George Washington University Medical Center
Table B: Health Economics Expert Panel
Agency for Healthcare Research and Quality (AHRQ)
Cincinnati Children's Hospital Medical Center
VA Cooperative Studies
Department of Veterans Affairs
Johns Hopkins University
University of California, Irvine
University of California, Irvine
The National Committee for Quality Assurance (NCQA)
Henry Ford Hospital
Section Four - References
Berger ML, Bingefors K, Hedblom EC, Pahso CL, Torrance GW. Health care cost, quality, and
outcomes: ISPOR book of terms. Lawrenceville, NJ: ISPOR; 2003.
Agency for Healthcare Research and Quality (AHRQ). AHRQ outcomes research fact sheet.
Washington, DC: AHRQ; March 2000[cited April 10, 2011]. Available from:
AcademyHealth, funded by U.S. National Library of Medicine. Health Outcomes Core Library
Recommendations, 2004. Washington, DC: AcademyHealth; 2004 [cited April 10, 2011].
Available from: http://www.nlm.nih.gov/nichsr/corelib/houtcomes.html.