National Information Center on Health Services Research and Health Care Technology (NICHSR)
Health Outcomes Core Library Recommendations, 2004
Compiled by AcademyHealth
Funded by the National Library of Medicine
The core list contains 42 books and 21 journals. In developing this list, we focused intentionally on U.S. publications. Although the amount of items purchased for a collection will hinge on budgetary constraints, care was taken to define the core list as one that might be reasonable for moderately sized collections. Some books are downloadable in PDF format from the Web for free. Others, such as reference books and textbooks, can cost as much as $525.001, while other titles may be purchased for $21.00. With respect to journals, annual subscriptions range from $125.00 to $1,817.00, with $500.00 being the average. The full project report is available in PDF format for printing.
What Are Health Outcomes? Why Are They Important?
In this time of scarce resources, it has become increasingly necessary to justify the impact of any health care intervention. Clinical findings alone, while important, are often an insufficient measure of an intervention’s impact. The study of health outcomes looks beyond the physiological measures of success to examine the effects of the health care process on patients and populations.
Health outcomes research seeks to understand the effects of health care practices and interventions. Researchers in this field use various measures of outcomes in hopes of using their findings to develop better ways to monitor and improve the quality of care. Some examples of measures of outcomes include:
- Longevity, mortality
- Chronic disease and morbidity
- Complications (of disease or of medical care)
- Physical functional status
- Psychosocial functioning
- Quality of life
- Costs of care
- Use of specified services
- Satisfaction with care, experiences with care (Iezzoni, p.2.)
When compared to traditional clinical and physiological research, health outcomes research is more comprehensive, has a greater focus on the patient, and measures what is often of greatest concern to the patient. Outcomes researchers look beyond the clinical success or failure of an intervention to define success by the effects of a treatment on various areas of a patient’s life. In cancer research, for example, where a cure might not be the only goal of treatment, outcomes research has provided information to help patients make choices that can improve their quality of life (Agency for Healthcare Research and Quality [AHRQ] Web site, June 2004).
Research in health outcomes takes into consideration patients’ functional status, well-being, and satisfaction with care. It encompasses all facets of the health care system, including clinical visits and the organization, financing, and regulation of health care (Foundation for Health Services Research, p.2). In addition, health outcomes research evaluates the results of the health care process in the doctor’s office, hospital, health clinic, and home. Randomized controlled studies—also known as efficacy studies—traditionally look at the success of treatments in a controlled environment, but can also examine the effects of those treatments as a component of health outcomes research.
The study of health outcomes is a relatively recent development in the field of health services research. Though it is difficult to place an exact date on its origin, researchers began shifting their attention to health outcomes approximately 30 years ago. Historically, clinicians relied on traditional physiological measures to determine if a health intervention is needed and whether or not that intervention is successful. Researchers have found that by looking only at these measures, they miss many of the outcomes that matter most to the patient and to society (AHRQ Web site).
The interest in health outcomes was originally derived primarily from two sources. The field of geriatrics began measuring and researching outcomes using such variables as an individual’s ability to function and their quality of life. The geriatric population often has multiple chronic conditions and functional limitations. Researchers found that single physiological measures were not adequate to meet the needs of this population. In addition, treatment goals for the geriatric population are different; rather than looking for a cure for the conditions, researchers were looking to improve functioning and the quality of life for these individuals.
In addition, studies such as the RAND Health Insurance Experiment led researchers to develop comprehensive measures to evaluate the effect of health system changes. Arguably one of the most important health insurance studies ever conducted, the experiment used a rigorous methodological approach to measurement to answer two questions in health care financing: (1) What is the impact of different levels of cost-sharing in medical care use, and (2) What consequences would this have on patients’ health? In the course of this experiment, RAND researchers, like geriatrics researchers, found single measures to be inadequate in measuring the impact of such a comprehensive and complex change. As a result, they developed new health status and patient satisfaction measures. Individuals who pioneered the RAND study in the 1970s are still leaders in the field of health outcomes research today. In addition, many of the measures developed as a result of the RAND experiment are still used predominately in the field (RAND Web site, June 2004).
The need for outcomes research was further highlighted when researchers in the early 1980s discovered that certain medical practices were performed much more frequently in some geographical areas than in others, even when there were no differences in underlying rates of disease in the places in question. In addition, there was little information about end results for patients treated using a particular intervention, and traditional clinical measures were often inadequate in determining which procedures were most effective (AHRQ Web site, June 2004).
Like the larger field of health services research, the study of health outcomes is multidisciplinary. First, it is a collaborative science that encompasses the work of physicians and nurses, economists, sociologists, political scientists, operations researchers, psychologists, biostatisticians, and epidemiologists (Foundation for Health Services Research, p. 2). Moreover, the applications of health outcomes research also traverse disciplines. Some of these applications for health outcomes measures include:
- Studies of variations in medical practice patterns;
- Comparison of the effectiveness of various treatments and procedures, (looking at which treatments for specific clinical problems work best for whom);
- Appropriateness studies that seek to develop criteria for determining circumstances in which a procedure should or should not be performed;
- Identifying patient preferences when multiple treatment options are available; and
- Development of tools to measure changes in health status and patient satisfaction with the health care process (Foundation for Health Services Research, pp. 3-5).
Though it is still a relatively young science, health outcomes research has captured the interest of a diverse group of funders, including public entities like the federal government, as well as the private sector, such as pharmaceutical or medical device companies. Some of the more prolific public supporters of health outcomes research include AHRQ and the Department of Veterans Affairs.
A shift in the way health care decisions are made is one emerging effect of health outcomes research. Information gleaned from this field is being used in a shared decision-making model to help patients make more informed choices about their health care. For example, the Center for Shared Decision Making at the Dartmouth-Hitchcock Medical Center provides a service to help patients make personal health care decisions. Staff members at the center will work with a patient to ensure that he or she understands the various implications of the choices facing him or her, including possible health and well-being outcomes (Dartmouth-Hitchcock Medical Center Web site, June 2004). Likewise, the Foundation for Informed Medical Decision Making produces programs to enable patients to make informed decisions. The programs include videos and Web-based decision aids and incorporate interviews with patients who have undergone treatments and have experienced both positive and negative outcomes. The goal of the foundation is to explain thoroughly each option so that the patient, along with the physician, can decide which option best suits him or her (Foundation for Informed Medical Decision Making Web site, June 2004).
The study of health outcomes has implications for every aspect of the health care system, including clinical practice, treatment, quality of life, health care delivery, information health policy, and health care financing. Outcomes research can affect health policy decision making at local, state, and national levels, and in both the private and public sectors. The wide scope of this discipline has allowed it to become one of the most important tools that policymakers, clinicians, managers, and payers have to learn more about the most effective and efficient ways to provide high quality health care (Foundation for Health Services Research, p. 10). 2
Core List of Books in Health Outcomes
The following list of core books in health outcomes is alphabetized by last name of the primary author. We suggest that libraries developing a collection in health outcomes periodically check the publisher’s Web site for the newest edition available.
Adams, K. and J.M. Corrigan, eds. 2003. Priority Areas for National Action: Transforming Health Care Quality. Institute of Medicine Committee on Identifying Priority Areas for Quality Improvement. Washington, DC: National Academies Press.
Berger, M.L., ed. 2003. Health Care Costs, Quality, and Outcomes: ISPOR Book of Terms. Lawrenceville, NJ: International Society of Pharmacoeconomic and Outcomes Research.
Bowling, A. 2001. Measuring Disease: A Review of Disease-Specific Quality of Life Measurement Scales, 2nd ed. Philadelphia, PA: Open University Press.
Boyle, P.J., ed. 1998. Getting Doctors to Listen: Ethics and Outcomes Data in Context. Washington, DC: Georgetown University Press.
Carr, A.J. et al. 2002. Quality of Life. London: BMJ Books.
Fayers, P.M. and D. Machin. 2000. Quality of Life: Assessment, Analysis and Interpretation. New York: John Wiley & Sons.
Hurtado, M.P. et al., eds. 2001. Envisioning the National Health Care Quality Report. Committee on the National Quality Report on Health Care Delivery. Washington, DC: National Academy Press.
Iezzoni, L.I., ed. 2003. Risk Adjustment for Measuring Health Care Outcomes. Chicago, IL: Health Administration Press.
Institute of Medicine. 2001. Crossing the Quality Chasm: A New Health System for the 21st Century. Committee on Quality Health Care in America. Washington, DC: National Academy Press.
Kleinpell, R.M., ed. 2001. Outcome Assessment in Advanced Practice Nursing. New York: Springer.
Kohn, L.T. et al., eds. 2000. To Err is Human: Building a Safer Health System. Institute of Medicine. Washington, DC: National Academy Press.
Leatherman, S. and D. McCarthy. 2002. Quality of Health Care in the United States, A Chartbook. New York: Commonwealth Fund.
Murray, C.J.L. et al. 2002. Summary Measures of Population Health: Concepts, Ethics, Measurements, and Applications. Geneva: World Health Organization.
Nolan, M.T. and V. Mock, eds. 2000. Measuring Patient Outcomes. Thousand Oaks, CA: Sage Publications.
Osborne, H. 2002. Partnering with Patients to Improve Health Outcomes. Gaithersburg, MD: Aspen Publishers.
Petitti, D.B. 2000. Meta-Analysis, Decision Analysis, and Cost-Effectiveness Analysis: Methods for Quantitative Synthesis in Medicine, 2nd ed. New York: Oxford University Press.
Schalock, R.L. 2001. Outcome-Based Evaluation, 2nd ed. New York: Kluwer Academic/Plenum Publishers.
Schilp, J.L. and R.E. Gilbreath, eds. 2000. Health Data Quest: How to Find and Use Data for Performance Improvement. San Francisco, CA: Jossey-Bass Publishers.
Staquet, M.J. et al., eds. 1998. Quality of Life Assessment in Clinical Trials: Methods and Practice. New York: Oxford University Press.
Wojner, A.W. 2001. Outcomes Management: Applications to Clinical Practice. St. Louis, MO: Mosby.
Core List of Journals in Health Outcomes
Journals marked with an asterisk (*) are known as the “Big Five medical journals” and should be core to all health-related libraries.
- Annals of Internal Medicine*
- Annual Review of Public Health
- British Medical Journal*
- Canadian Medical Association Journal
- Health Affairs
- Health and Quality of Life Outcomes (online journal)
- Health Services Research
- International Journal for Quality in Health Care
- Joint Commission Journal on Quality and Safety (formerly known as the Joint Commission Journal on Quality Improvement)
- Journal of Clinical Epidemiology
- Medical Care
- Medical Care Research and Review
- Medical Decision Making
- New England Journal of Medicine*
- Outcomes Management (online journal)
- Outcomes Management for Nursing Practice (online journal)
- Quality of Life Research
- Value in Health
Classic Books in Health Outcomes
The following list includes classic books in the field of health outcomes, as well as some that show the course the field has taken in recent years. While they many not be most current among health outcomes literature, we feel these books are extremely valuable from a historical and reference perspective.
Donabedian, A. 1980. The Definition of Quality and Approaches to Its Assessment. Ann Arbor, MI: Health Administration Press.
Donabedian, A. 1980-1985. Explorations in Quality Assessment and Monitoring. 3 Volumes. Ann Arbor, MI: Health Administration Press.
Donabedian, A. 1982. The Criteria and Standards of Quality. Ann Arbor, MI: Health Administration Press.
Donabedian, A. 1985. The Methods and Findings of Quality Assessment and Monitoring. Ann Arbor, MI: Health Administration Press.
Drummond, M.F. et al. 1997. Methods for the Economic Evaluation of Health Care Programmes, 2nd ed. Oxford: Oxford University Press.
Feasley, J.C., ed. 1996. Health Outcomes for Older People: Questions for the Coming Decade. Institute of Medicine Division of Health Care Services. Washington, DC: National Academy Press.
Foundation for Health Services Research. 1992. Health Outcomes Research: A Primer. Washington, DC: Foundation for Health Services Research. (Available at https://web.archive.org/web/20150513080559/http://www.academyhealth.org/files/publications/healthoutcomes.pdf)
Gold, M.R., ed. 1996. Cost-Effectiveness in Health and Medicine. Oxford: Oxford University Press.
Luft, H.S. et al. 1990. Hospital Volume, Physician Volume, and Patient Outcomes: Assessing the Evidence. Ann Arbor, MI: Health Administration Press.
Kane, R.L., ed. 1997. Understanding Health Care Outcomes Research. Gaithersburg, MD: Aspen Publishers.
McDowell, I. and C. Newell. 1996. Measuring Health: A Guide to Rating Scales and Questionnaires, 2nd ed. New York: Oxford University Press.
Murray, C.J.L. and A.D. Lopez., eds. 1996. The Global Burden of Disease: A Comprehensive Assessment of Mortality and Disability from Diseases, Injuries, and Risk Factors in 1990 and Projected to 2020. Cambridge, MA: Harvard School of Public Health.
Patrick, D.L. and P. Erickson. 1993. Health Status and Health Policy: Quality of Life in Health Care Evaluation and Resource Allocation. New York: Oxford University Press.
Sackett, D.L. et al. 1991. Clinical Epidemiology: A Basic Science for Clinical Medicine, 2nd ed. Boston, MA: Little, Brown.
Sederer, L.I. and B. Dickey, eds. 1996. Outcomes Assessment in Clinical Practice. Baltimore, MD: Williams & Wilkins.
Spath, P.L., ed. 1994. Clinical Paths: Tools for Outcomes Management. Chicago, IL: Jossey-Bass.
Spath, P.L., ed. 1997. Beyond Clinical Paths: Advanced Tools for Outcomes Management. Chicago, IL: American Hospital Pub.
Stewart A.L. and J.E. Ware, Jr., eds. 1992. Measuring Functioning and Well-Being: The Medical Outcomes Study Approach. Durham, NC: Duke University Press.
Streiner, D.L. and G.R. Norman. 1995. Health Measurement Scales: A Practical Guide to Their Development and Use, 2nd ed. New York: Oxford University Press.
Ware, J.E. et al. 1995. SF-12: How to Score the SF-12 Physical and Mental Health Summary Scales. Boston, MA: The Health Institute, New England Medical Center.
Ware, J.E. et al. 1993. SF-36 Health Survey Manual and Interpretation Guide. Boston, MA: The Health Institute, New England Medical Center.
Weiss, N.S. 1996. Clinical Epidemiology: The Study of the Outcome of Illness. New York: Oxford University Press.
Desired List of Books in Health Outcomes
The following list of desired books in health outcomes is alphabetized by last name of the primary author. Prior to adding to one’s collection, individuals may want to check to see if a more current edition is available.
American Medical Association. 1997. Outcomes Research Resource Guide 1997: A Survey of Current Activities. Chicago, IL: American Medical Association, Department of Practice Parameters.
American Medical Association, 2000. Clinical Performance Measurement Directory. Chicago, IL: American Medical Association.
American Nurses Association. 2000. Nurse Staffing and Patient Outcomes in the Inpatient Hospital Setting. Washington, DC: American Nurses Association.
Chapman, G.B. and F.A. Sonnenberg. 2000. Decision Making in Health Care: Theory, Psychology, and Applications. New York: Cambridge University Press.
Codman, E.A. 1996. A Study in Hospital Efficiency as Demonstrated by the Case Report of the First Five Years of a Private Hospital. Oakbrook Terrace, IL: Joint Commission on Accreditation of Healthcare Organizations.
Cohen, Alan B. et al. 2003. Technology in American Health Care : Policy Directions for Effective Evaluation and Management. Ann Arbor, MI : University of Michigan Press
Cramer, J.A. and B. Spilker. 1998. Quality of Life and Pharmacoeconomics: An Introduction. Philadelphia, PA: Lippincott-Raven.
Davies, A.R. et al. 1994. A Guide to Establishing Programs for Assessing Outcomes in Clinical Settings. Oakbrook Terrace, IL: Joint Commission on Accreditation of Healthcare Organizations.
Dever, G.E.A. 1997. Improving Outcomes in Public Health Practice: Strategy and Methods. Gaithersburg, MD: Aspen Publishers.
Donaldson, M.S. and A.M. Capron, eds. 1991. Patient Outcomes Research Teams: Managing Conflict of Interest. Institute of Medicine Committee on Potential Conflicts of Interest in Patient Outcomes Research Teams. Washington, DC: National Academy Press.
Doran, D.M. et al., eds. 2003. Nursing-Sensitive Outcomes. Boston, MA: Jones and Bartlett Publishers.
Eddy, D.M. 1992. A Manual for Assessing Health Practices & Designing Practice Policies: The Explicit Approach. Philadelphia, PA: American College of Physicians.
Fairclough, D.L. 2002. Design and Analysis of Quality of Life Studies in Clinical Trials: Interdisciplinary Statistics. Boca Raton, FL: Chapman & Hall/CRC.
Glanz, K. et al., eds. 2002. Health Behavior and Health Education: Theory, Research, and Practice, 3rd ed. San Francisco, CA: Jossey-Bass Publishers.
Hawkins, R.P. et al. 1999. Measuring Behavioral Health Outcomes: A Practical Guide. New York: Kluwer Academic/Plenum Publishers.
Heithoff, K.A. and K.N. Lohr, eds. 1990. Effectiveness and Outcomes in Health Care: Proceedings of an Invitational Conference by the Institute of Medicine, Division of Health Care Services. Washington, DC: National Academy Press.
Joint Commission on Accreditation of Healthcare Organizations. 1993. The Measurement Mandate: On the Road to Performance Improvement in Health Care. Oakbrook Terrace, IL: Joint Commission on Accreditation of Healthcare Organizations.
Lorig, K. et al. 1996. Outcome Measures for Health Education and Other Health Care Interventions. Thousand Oaks, CA: Sage Publications.
Markson, L. and D. Nash, eds. 1995. Accountability in Quality Health Care: The New Responsibility. Oakbrook Terrace, IL: Joint Commission on Accreditation of Healthcare Organization.
Naar-King, S. et al., eds. 2004. Assessing Children's Well-Being: A Handbook of Measures. Mahwah, NJ: Lawrence Erlbaum Associates.
National Committee for Quality Assurance. HEDIS – Health Plan Empoloyer Data and Information Set 2004. Volume 2: Technical Specifications. Washington, DC: NCQA.
Nord, E. 1999. Cost-Value Analysis in Health Care: making Sense Out of QALYs. New York: Cambridge University Press.
Nunnally, J.C. and I.H. Bernstein. 1994. Psychometric Theory, 3rd ed. New York: McGraw-Hill.
Palmer, R.H. et al. 1991. Striving for Quality in Health Care: An Inquiry into Policy and Practice. Ann Arbor, MI: Health Administration Press.
Patterson, R., ed. 2001. Changing Patient Behavior: Improving Outcomes in Health and Disease Management. San Francisco, CA: Jossey-Bass.
Schilp, J.L. and R.E. Gilbreath. Eds. 2000. Health Data Quest: How to Find and Use Data for Performance Improvement. San Francisco, CA: Jossey-Bass.
Seltzer, J. and D.B. Nash, eds. 1997. Models for Measuring Quality in Managed Care: Analysis and Impact. New York: Faulkner & Gray's Healthcare Information Center.
Sloan, F.A. 1995. Valuing Health Care: Costs, Benefits, and Effectiveness of Pharmaceuticals and Other Medical Technologies. New York: Cambridge University Press.
Sox, H.C., Jr. et al. 1988. Medical Decision Making. Boston, MA: Butterworths.
Spilker, B. ed. 1996. Quality of Life and Pharmacoeconomics in Clinical Trials, 2nd ed. Philadelphia, PA: Lippincott-Raven.
Starfield, B. Primary Care: Concept, Evaluation, and Policy. New York: Oxford University Press, 1992.
Stone, A.A. et al., eds. 2000. The Science of Self-Report: Implications for Research and Practice. Mahwah, NJ: Lawrence Erlbaum Associates. Dana suggested moving to core.
Vibbert, S. et al., eds. 1995. The 1995 Medical Outcomes & Guidelines Sourcebook: A Progress Report and Resource Guide on Medical Outcomes Research and Practice Guidelines: Developments, Data and Documentation. Washington, DC: Faulkner & Gray.
Wall, D.K. 1997. Measuring Outcomes: Data Analysis Made Easy. Chicago, IL: Precept Press.
Warren, K.S. and F. Mosteller, eds. 1993. Doing More Good than Harm: The Evaluation of Health Care Interventions. New York: New York Academy of Sciences. Dana suggested moving to core.
Yeomans, S.G. 2000. Clinical Application of Outcomes Assessment. Stamford, CT: Appleton & Lange.
Desired List of Journals in Health Outcomes
The individual developing a health outcomes collection may want to consider acquiring selected specialty journals appropriate to their respective audience, (e.g., American Review of Respiratory Disease or Statistics in Medicine). Additionally, alert services, such as those noted at the bottom of this list, should be considered.
- ACP Journal Club
- The American Journal of Epidemiology
- The American Journal of Managed Care
- American Journal of Public Health
- Archives of Internal Medicine
- Clinical Evidence
- Evidence-Based Nursing
- Evidence-Based Practice
- Health Services and Outcomes Research Methodology
- Health Technology Assessment
- International Journal of Technology Assessment in Healthcare
- Journal of the American Geriatrics Society
- Journal of Chronic Disease
- Journal of General Internal Medicine
- Journal of Health Politics, Policy, and Law
- Journal of Health Services Research and Policy
- Milbank Quarterly
- Quality and Safety in Health Care
- Social Science & Medicine
The individual developing a collection in health outcomes may want to consider subscribing to the following alert services:
- Agency for Healthcare Research and Quality - www.ahrq.gov
- Employee Benefit Research Institute (EBRI) - www.ebri.org
- Government Accounting Office (GAO) - www.gao.gov
- Kaiser Family Foundation - www.kff.org
- Morbidity and Mortality Weekly Report (MMWR) - www.cdc.gov/mmwr
- Reuter's Health News - www.reuters.com/news/health
Core Bibliographic Databases Containing Significant Information on Health Outcomes
|Centre for Reviews and Dissemination||www.york.ac.uk/inst/crd||From the University of York, provides research-based information about the effects of interventions used in health and social care. Includes systematic reviews, research literature scoping reviews, and access to three databases: Database of Abstracts of Reviews of Effects, NHS Economic Evaluation Database, and Health Technology Assessment Database. Also the home of the Effective Health Care bulletins.||No|
|CINAHL (Cumulative Index to Nursing and Allied Health Literature)||www.cinahl.com||Database covering nursing and allied health.||Yes|
|The Cochrane Library||http://community.cochrane.org/editorial-and-publishing-policy-resource/overview-cochrane-library-and-related-content||Consists of a regularly updated collection of evidence-based medicine databases, including The Cochrane Database of Systematic Reviews.||Yes|
|DARE: Database of Abstracts of Reviews of Effectiveness||http://www.crd.york.ac.uk/CRDWeb/||British database of quality assessed reviews.||No|
|EMBASE||www.embase.com||Database providing access to biomedical and drug literature||Yes|
|Health and Psychosocial Instruments (HaPI)||ovid.com/site/products/ovidguide/hapidb.htm||Citations to identify and evaluate measurement tests used in health and psychosocial studies provided by Behavioral Measurement Database Services. Accessed through Ovid.||Yes|
|Health Services and Sciences Research Resources (HSRR)||www.nlm.nih.gov/nichsr/hsrr_search||HSRR contains information about research datasets and instruments/indices employed in Health Services Research, and the Behavioral and Social Sciences and Public Health with links to PubMed and additional resources. Provided by NLM.||No|
|HSTAT (Health Services/Technology Assessment Text)||http://www.ncbi.nlm.nih.gov/books/?term=hstat||HSTAT is a searchable collection of large, full-text clinical practice guidelines, technology assessments and health information provided by NLM.||No|
|LOCATORplus||locatorplus.gov||NLM's online catalog||No|
|MEDLINE/PubMed||PubMed.gov||References and abstracts from 4600 biomedical journals||No|
|NLM Gateway||gateway.nlm.nih.gov||Allows users to search National Library of Medicine retrieval systems (MEDLINE/PubMed, LOCATORplus, MEDLINEplus, ClinicalTrials.gov, DIRLINE, Meeting Abstracts, and HSRPro)j.||No|
|Quality of Life Instruments Database||www.qolid.org||Developed by the MAPI Research Institute, QOLID aims to identify and describe quality of life instruments to help you choose appropriate questionnaires and facilitate your access to them.||Yes|
Desired Bibliographic Databases Containing Significant Information on Health Outcomes
|Agesource/Agestats||www.aarpinternational.org/database/||Searchable AARP databases containing summaries of publications on older adults and aging (i.e., books, articles, research reports, statistical data, and videos).||No|
|AMED Allied and Complementary Medicine||http://www.ovid.com/webapp/wcs/stores/servlet/product__13051_-1_13151_Prod-12_____PDP||Bibliographic database produced by the Health Care Information Service of the British Library. Covers a selection of journals in several professions allied to medicine, complementary medicine, and palliative care.||Yes|
|Lexis/Nexis Medical Research Tools||http://www.lexisnexis.com/en-us/gateway.page||Provides authoritative legal, news, public records and business information.||Yes|
|Mental Measurements Yearbook Test Reviews||Provides information on more than 4,000 commercially available tests.||Yes|
|PsycInfo||http://psycnet.apa.org/||PsycINFO is an abstract database of psychological literature from the 1800s–present provided by the American Psychological Association.||Yes|
|Science Citation Index||http://ip-science.thomsonreuters.com/cgi-bin/jrnlst/jloptions.cgi?PC=K||Provides access to current and retrospective bibliographic information, author abstracts, and cited references found in 5,900 of the world's leading scholarly science and technical journals covering more than 150 disciplines.||Yes|
|Social Science Citation Index||http://ip-science.thomsonreuters.com/cgi-bin/jrnlst/jloptions.cgi?PC=SS||Provides access to current and retrospective bibliographic information, author abstracts, and cited references found in over 1,700 of the world's leading scholarly social sciences journals covering more than 50 disciplines.||Yes|
Relevant Health Outcomes Web Sites
|AcademyHealth||www.academyhealth.org||AcademyHealth is the professional home for health services researchers, policy analysts, and practitioners, and a leading, non-partisan resource for the best in health research and policy|
|Agency for Healthcare Research and Quality (AHRQ)||www.ahrq.gov||AHRQ research provides evidence-based information on health care outcomes; quality; and cost, use, and access.|
|AHRQ Evidence-Based Practice (incl. EPC Reports)||http://www.ahrq.gov/health-care-information/topics/topic-evidencebased-practice.html||Scientific reviews, evidence reports, centers and topics, and methodology.|
|AHRQ HCUPnet (Healthcare Cost and Utilization Project)||hcupnet.ahrq.gov/||A tool for identifying, tracking, analyzing, and comparing statistics on hospitals at the national, regional, and state level|
|AHRQ Health Care Outcomes & Effectiveness Research||http://www.ahrq.gov/health-care-information/topics/topic-heor.html||Medical treatment findings, pharmaceutical therapy, and outcomes research.|
|AHRQ Quality Indicators||www.qualityindicators.ahrq.gov||Measures of health care quality that make use of readily available hospital inpatient administrative data.|
|AHRQ Technology Assessment Program||http://www.ahrq.gov/research/findings/ta/index.html||AHRQ's technology assessment program uses state-of-the-art methodologies for assessing the clinical utility of medical interventions. Technology assessments are based on a systematic review of the literature, along with appropriate qualitative and quantitative methods of synthesizing data from multiple studies.|
|American Health Quality Association||www.ahqa.org||The nation's largest medical specialty society. Its mission is to enhance the quality and effectiveness of health care by fostering excellence and professionalism in the practice of medicine. Under Quality Improvement in Action Section, read vignettes on success stories in improving care, process indicators, and outcomes.|
|Centers for Disease Control and Prevention||www.cdc.gov||CDC is recognized as the lead federal agency for protecting the health and safety of people - at home and abroad, providing credible information to enhance health decisions, and promoting health through strong partnerships. Visitors to this site should enter "health outcomes" in the search bar to be directed to a variety of health outcomes information.|
|Center for Healthcare Outcomes and Policy (CHOP)||umchop.org/||The Center for Healthcare Outcomes & Policy (CHOP) at the University of Michigan aims to improve the efficiency of healthcare in the United States, by optimizing clinical practice and informing health policy.|
|Center for Health Quality, Outcomes, and Economic Research||http://web.archive.org/web/20130820065359/http://www.chqoer.research.va.gov/||One of 13 Centers of Excellence within the Veterans Administration Health Services Research and Development Program. Research focuses on health quality assessment, outcomes measurement, health economics, and health statistics.|
|Center for Health Policy and Center for Primary Care and Outcomes Research||med.stanford.edu/genpeds/research/cross-disciplinary-partnerships/cente-health-policy-center-primary-care-outcomes-research.html||The Center for Health Policy (CHP) and the Center for Primary Care and Outcomes Research (PCOR) are two centers carrying out innovative research on critical issues of health care and health policy--dedicated to providing reliable information for health policy and health care delivery to public and private sector decision-makers.|
|Center for Information Dissemination and Education Resources(formerly Measurement Excellence Initiative).||http://www.cider.research.va.gov/||One of four resource centers under the VA Health Services and Research Development (HSR&D) Service. Focus is on disseminating of information about finding, evaluating, and applying measurement instruments; educating researchers in all phases of the measurement process; facilitating the sharing of measurement knowledge; and advancing measurement science through research.|
|Center for the Evaluative Clinical Sciences at Dartmouth||www.dartmouth.edu/~cecs/index.html||A locus of scientists and clinician-scholars from Dartmouth's medical and graduate schools who conduct cutting edge research on critical medical and health issues with the goal of measuring, organizing, and improving the health care system.|
|Centers for Education & Research on Therapeutics||www.certs.hhs.gov||A research program administered by AHRQ that conducts research and provides education to advance the optimal use of drugs, medical devices, and biological products.|
|Centers for Medicare and Medicaid Services||https://www.cms.gov/||Formerly the Health Care Financing Administration (HCFA), CMS is a Federal agency within the U.S. Department of Health and Human Services responsible for Medicare, Medicaid, State Children's Health Insurance Program (SCHIP), HIPAA, and CLIA.|
|Center for Outcomes Research (University of Massachusetts Medical School)||http://www.outcomes-umassmed.org/||Collects and evaluates data that reflect real world clinical practices and outcomes and provides physicians with confidential reports that allow comparison of their practices to evidence-based performance standards.|
|Consortium for Health Outcomes Innovations and Cost Effectiveness Studies (CHOICES)||www.med.umich.edu/choices||Site dedicated to assisting researchers studying the quality and economic impact of health care services.|
|Dartmouth Atlas of Health Care||www.dartmouthatlas.org||Brings together researchers in diverse disciplines - including epidemiology, economics, and statistics - and focuses on the accurate description of how medical resources are distributed and used in the United States. The project publishes a series of books, related to health outcomes, many of which can be viewed or downloaded here.|
|Effective Health Care||www.york.ac.uk/inst/crd/ehcb.htm||A bi-monthly bulletin for decision makers which examines the effectiveness of a variety of health care interventions.|
|EuroQuol Group||www.euroqol.org||An international network of multidisciplinary researchers involved in the design, update, and translation of a systematic instrument for measuring health status and health-related quality of life.|
|HCFO (Changes in Health Care Financing and Organization)||www.hcfo.net||Strives to bridge the health services research and health policy communities and to provide public and private decision-makers with usable information on health care policy, financing, and organization.|
|Health Institute at Tufts New England Medical Center||www.tuftsmedicalcenter.org||At Tufts-New England Medical Center, The Health Institute improves individual and population health by advancing measurement of and knowledge about the social, behavioral, medical and biologic factors that influence health.|
|Health Utilities Group/Health Utilities Index and Quality of Life||www.fhs.mcmaster.ca/hug||The Health Utilities Index is a generic, preference-scored, comprehensive system for measuring health status, health-related quality of life, and producing utility scores. The Health Utilities Group focuses on preference-based measures of health-related quality of life for describing treatment process and outcomes in clinical studies, for population health studies, and economic evaluations of health care services.|
|Highwire Press||highwire.stanford.edu/lists/freeart.dtl||List of journals/articles that are freely available online (limited to journals published electronically with the assistance of Highwire Press). Includes journals related to health outcomes including BMJ, Canadian Medical Association Journal, Health Affairs, and others.|
|Institute for Healthcare Improvement||www.ihi.org||A nonprofit organization that offers resources and services to help health care organizations make improvements that enhance clinical outcomes and reduce costs.|
National Academy of Medicine
(Formerly Institute of Medicine)
|nam.edu/||Part of the National Academies, IOM works outside the framework of government to ensure scientifically informed analysis and independent guidance. IOM serves as adviser to the nation to improve health. and provides unbiased, evidence-based, and authoritative information and advice concerning health and science policy to policy-makers, professionals, leaders in every sector of society, and the public at large.|
|International Network of Agencies for Health Technology Assessment||www.inahta.org||Provides a forum for the identification and pursuit of interests common to health technology assessment agencies. Also provides links to several health outcomes information sources.|
|International Society for Pharmacoeconomics and Outcomes Research||www.ispor.org||An international organization promoting the science of pharmacoeconomics and health outcomes research.|
|International Society for Quality in Health Care||www.isqua.org/||A non-profit, independent organization that works to provide services to guide health professionals, providers, researchers, agencies, policy makers, and consumers; to achieve excellence in healthcare delivery to all people; and to continuously improve the quality and safety of care. Produces The International Journal for Quality in Health Care.|
|International Society for Quality of Life Research||http://www.isoqol.org/||Promotes the rigorous investigation of health-related quality of life measurement from conceptualization to application and practice.|
|International Society for Quality-of-Life Studies||http://www.isqols.org/||An international society that promotes and encourages research in the field of quality-of-life studies.|
|Joint Commission on Accreditation of Healthcare Organizations||www.jcaho.org||An independent, not-for-profit organization that evaluates and accredits more than 16,000 health care organizations and programs in the United States.|
|Kaiser Family Foundation||www.kff.org||An independent philanthropy focusing on the major health care issues facing the nation.|
|MAPI Research Trust||http://www.mapi-trust.org/||An international health outcomes organization that supports and promotes research in the field of health-related quality-of-life. More than 11,000 articles, books, journals and reports on health outcomes are indexed in the Information Resources Centre library catalogue. Twice a year MAPI publishes the Quality of Life newsletter, recognized as a major means of communication and information in the field. MAPI also developed the Quality of Life Instruments (QOLID) database. Refer to databases for additional information.|
|Medical Outcomes Trust||www.outcomes-trust.org/||A not for profit organization dedicated to improving health and health care by promoting the science of outcomes measurement, and the development, evaluation and distribution of standardized, high quality instruments that measure health and the outcomes of medical care.|
|National Center for Health Statistics (NCHS)||www.cdc.gov/nchs||The Nation’s principal health statistics agency, NCHS compiles statistical information to guide actions and policies to improve the health of our people.|
|NCHS Publications and Information Products||cdc.gov/nchs/products/pubs/
|Reports and publications of NCHS.|
|NCHS Surveys and Data Collection Systems||www.cdc.gov/nchs/surveys.htm||Some NCHS data systems and surveys are ongoing annual systems while others are conducted periodically. NCHS has two major types of data systems: systems based on populations, containing data collected through personal interviews or examinations; and systems based on records, containing data collected from vital and medical records.|
|National Committee for Quality Assurance||www.ncqa.org||A private non-profit organization dedicated to improving health care quality everywhere.|
|National Institute for Health Research: Health Technology Assessment Programme||www.nets.nihr.ac.uk/programmes/hta||A national program of research established by the National Health Service (UK) Department of Health's research and development program to ensure that high quality research information on the costs, effectiveness and broader impact of health technologies is produced in the most effective way for those who use, manage, and provide care in the National Health Service (UK).|
|National Guideline Clearinghouse||www.guideline.gov||A comprehensive database of evidence-based clinical practice guidelines and related documents produced by the Agency for Healthcare Research and Quality (AHRQ), U.S. Department of Health and Human Services, in partnership with the American Medical Association (AMA) and the American Association of Health Plans (AAHP).|
|National Information Center on Health Services Research and Health Care Technology||www.nlm.nih.gov/nichsr/nichsr.html||Works with 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 which provide organizations with comprehensive, science-based information on common, costly medical conditions and new health care technologies.|
|National Institute for Clinical Excellence||www.nice.org.uk||Part of the National Health Service (NHS, United Kingdom. The role of NICE is to provide patients, health professionals and the public with authoritative, robust and reliable guidance on current "best practice".|
|NLM Gateway||gateway.nlm.nih.gov/gw/Cmd||Allows users to search National Library of Medicine retrieval systems (MEDLINE/PubMed, LOCATORplus, MEDLINEplus, ClinicalTrials.gov, DIRLINE, Meeting Abstracts, and HSRProj).|
|National Patient Safety Foundation||http://www.npsf.org/||An organization dedicated to improving patient safety. Web site includes access to NPSF publications, as well as an extensive bibliography (with links where available) of publications addressing patient safety.|
|National Quality Forum||www.qualityforum.org||A private, not-for-profit membership organization created to develop and implement a national strategy for healthcare quality measurement and reporting.|
|National Quality Measures Clearinghouse||www.qualitymeasures.ahrq.gov||A database and Web site 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.|
|NCI Cancer Control and Population Sciences - Outcomes Research||outcomes.cancer.gov||The outcomes research branch of the National Cancer Institute. Coordinates and sponsors research to measure, evaluate, and improve the outcomes of cancer care.|
|New York Academy of Medicine Grey Literature Report||www.greylit.org/||Links to NYAM's Grey Literature Report, a quarterly publication alerting readers to new grey literature publications as they are acquired, and to web pages of many of the organizations and agencies producing grey literature in the fields of health policy and public health.|
|Ohio State University, Center for HOPES (Health Outcomes, Policy, and Evaluation Studies)||https://cph.osu.edu/hopes||Brings together researchers from across disciplines who are interested in understanding and improving health and health care. This website details the Center's current activities.|
|Online Guide to Quality of Life Assessment (OLGA)||www.olga-qol.com||A comprehensive source of information about questionnaires, rating scales and other tools for assessing psychosocial effectiveness in clinical and pharmacoeconomic studies.|
|Partnership for Prevention||www.prevent.org||An organization dedicated to preventing disease and promoting health. Services include: educational briefings, policy research, and forums for governments and private organizations to forge agendas.|
|Population Health Alliance||http://www.populationhealthalliance.org/||A membership organization serving the disease management community. See especially the Outcomes Consolidation Project on measuring the outcomes of disease management programs.|
|Quality Health Care||www.qualityhealthcare.org/qhc||QualityHealthCare.org is a global knowledge environment created to help health care professionals around the world accelerate their progress toward unprecedented levels of performance and improvement.|
|QualityMetric, Incorporated||www.qualitymetric.com||QualityMetric was founded by John Ware to transfer health outcomes assessment technology from the scientific community to the health care industry and to work with key stakeholders to develop the most appropriate business model for widespread adoption of standards and for the much-needed rapid advancement in technology.|
|RAND Corporation||www.rand.org||A nonprofit research organization providing objective analysis and effective solutions that address the challenges facing the public and private sectors around the world.|
|Robert Wood Johnson Foundation||www.rwjf.org/index.jsp||Seeks to improve the health and health care of all Americans by assuring that all Americans have access to quality health care at reasonable cost; improving the quality of care and support for people with chronic health conditions; promoting healthy communities and lifestyles; and reducing the personal, social and economic harm caused by substance abuse.|
|SF-36 (36-Item Short Form)||http://www.sf-36.org/||The SF-36 Health Survey was developed for the Medical Outcomes Study, and has been tested and validated extensively.|
|University of Pennsylvania, Center for Health Outcomes and Policy Research||www.nursing.upenn.edu/chopr||Within the School of Nursing, the Center draws together faculty from nursing, sociology, demography, medicine, management, economics, and other related disciplines. It is a research and research training enterprise focusing on the outcomes of health care and health workforce policy. With collaborators from around the world, researchers study health system reorganization and policy changes and aim to produce evidence to improve the quality of health care.|
for Quality in
Health Care, Inc.
|www.vpqhc.org||NonProfit organization working to develop and implement a system of quality design and measurement for physicians, and other health care professionals, hospitals, and other health care facilities, users and purchasers that produces continuous improvement of health care and efficient uses of resources.|
(World Health Organization - Choosing Interventions that are Cost Effective)
|An ongoing World Health Organization project that aims to assemble regional databases on the costs, impact on population health and cost-effectiveness of key health interventions.|
|WHO Health Systems Performance - Outcomes Measurement||http://web.archive.org/web/20131025232330/http://www.who.int/health-systems-performance/outcomesmeasurement.htm||Links to World Health Organization publications focused on outcomes measurement.|
Agency for Healthcare Research and Quality Web site. “Outcomes Research Fact Sheet.” http://archive.ahrq.gov/research/findings/factsheets/outcomes/outfact/outcomes-and-research.html. Accessed January 2016.
Dartmouth-Hitchcock Medical Center, Center for Shared Decision Making Web site. http://med.dartmouth-hitchcock.org/csdm_toolkits.html. Accessed January 2016.
Foundation for Health Services Research. “Health Outcomes Research: A Primer.” Foundation for Health Services Research, 1994, p. 2. Also see
https://studylib.net/doc/11579500/health-outcomes-research--a-primer. Accessed April 2017.
Informed Medical Decision Making Foundation Web site. http://www.informedmedicaldecisions.org/. Accessed January 2016.
Iezzoni, Lisa I. 1997. Risk Adjustment for Measuring Healthcare Outcomes. Academy for Health Services Research. Health Administration Press: Chicago.
RAND Web site. RAND Health Insurance Experiment page. http://www.rand.org/health/projects/hie.html. Accessed May 2004.
1 Costs noted are for new, hardcover editions. In many instances, books listed on this list can be purchased in paperback, or in a used format, for a lower price.
2 Data gathered from this analysis were used as a supporting mechanism to separate journals into the core and desired lists.