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| Health Outcomes Core Library Project Order No. P.O. 467-MZ-301222 Submitted
to: By: AcademyHealth July 14, 2004
The following AcademyHealth staff worked on this project: Sharon Arnold,
Research Manager Table of Contents Section One
Section Two
Section Three
Section Four Section Five
Section Six
Health Outcomes Core Library Project Section One Background The National Library of Medicine (NLM) contracted with AcademyHealth to develop a core list of books, journals, Web sites and bibliographic databases and a desired list of books and journals in the field of health outcomes. Both lists are intended to serve as a guide for librarians who want to develop a health outcomes collection. 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. 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:
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:
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). Using NLM and AcademyHealth staff recommendations, and drawing on an extensive AcademyHealth contact list, we identified one panel of librarian experts and one panel of academic experts. (Please refer to Section Five of this report for a list of the experts.) The librarian expert panel comprised ten librarians employed at health policy centers, academic institutions, and government agencies located within the Washington, D.C. metropolitan area2. The academic panel comprised eight health outcomes experts from academia, non-profit organizations, and federal agencies. As the first order of business, AcademyHealth staff—with its panelists—developed a working definition of health outcomes, expanding upon the 2003 Agency for Healthcare Research and Quality definition3:
Using the working definition as a guide, staff tallied resource recommendations from panelists, culled through course syllabi, library collections, and the Internet, and developed and ranked four lists of resources: books, journals, bibliographic databases, and Web sites. To be considered as a book or a journal, a resource had to be in print and readily available. Further, if a resource was available both in print and in electronic fashion, the electronic version was listed under Web sites. The expert librarians reviewed the four lists of resources and met as a group on December 3, 2003, to discuss, refine, condense, and rank the resources. Books, journals, and bibliographic databases were separated into core and desired categories. (Of note, since the Web sites can be accessed at no cost, we did not subdivide the urls in this section with a core or desired ranking.) As panelists ranked the books, it became apparent that the core list should be further subdivided into a classics list. While classics may not be the most current resources, librarian panelists felt they are valuable additions to a collection from a historical and reference perspective. Resources designated as “core” are those deemed essential to a basic health outcomes collection. Resources designated “desired” are additional health outcomes resources that an individual or library might acquire or subscribe to. Books and journals on the core list were those recommended by more than one academic and librarian panelist. The initial four lists were filtered and separated into core and desired sub lists in the following four categories:
After the meeting, AcademyHealth staff modified the lists and re-circulated them to the expert librarians for final review and comment. The lists were then circulated to the eight academic experts for review. Of note, the librarian panel had agreed that the academic panel would provide the final ranking and approval of all four lists.) AcademyHealth staff reviewed and cross-checked all comments received from the academic experts, conducted follow-up telephone calls and e–mails as needed, and adjusted the lists accordingly. In addition, AcademyHealth staff used the 2002 ISI Journal Citation Report, published by the Institute for Scientific Information4, to ascertain how many times articles in a particular journal were cited within two years following the publication date. Staff collected information on the Impact Factor and Immediacy Index. The Impact Factor is the average number of current citations to articles cited during the year that they were published. The Immediacy Index is the average number of times current articles are cited during the year they were published. (Please refer to Table I on page ten.) After the December 3, 2003 meeting, AcademyHealth staff modified the lists and re-circulated them to the expert librarians for final review and comment before sending the lists to the eight academic experts. AcademyHealth staff reviewed and cross-checked all comments received from the academic experts, conducted follow-up telephone calls and e–mails as needed, and made revisions. The lists of core and desired health outcomes books and journals can be found in section two of this report. Section three contains the core and desired health outcomes bibliographic databases in a table format. Section four contains a list of relevant health outcomes Web sites. The last section of the report, section five, contains the names of our two panels of experts. Table I — Impact Factor and Immediacy Index
Section Two 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.
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 academyhealth.org/publications/monographarchives.htm) 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: The Joint Commission. 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: The Joint Commission. 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.
Alert Services The individual developing a collection in health outcomes may want to consider subscribing to the following alert services:
Core Bibliographic Databases Containing Significant Information on Health Outcomes
Section Four Relevant Health Outcomes Web Sites
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