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Redefining the role of research in an evolving health care market

The U.S. health care system is currently undergoing two major transformations. First, public programs in health and social services are being reorganized, downsized, and privatized. These changes are reshaping and redefining the responsibility for social welfare programs that have provided health and income support for poor, elderly, and disabled persons for decades. Second, even more dramatic changes are taking place in the private health care market. These include the shift to managed care, increasing vertical and horizontal integration, and the forging of new relationships among insurers, providers, and purchasers in an increasingly competitive market.

These major transformations in health care financing and delivery may call for a shift in the way we think about Government- and foundation-supported research, note Clifton R. Gaus, Sc.D., Administrator of the Agency for Health Care Policy and Research, and Irene Fraser, Ph.D., Director of AHCPR's Center for Organization and Delivery Studies. In today's changing health care arena, Government agencies and private-sector organizations will face new challenges to provide the data, tools, and analysis necessary to help the health care marketplace work more efficiently and effectively.

These agencies and organizations also will be expected to support and conduct research and evaluations to assess how well the market is meeting critical health care objectives and then disseminate the findings of their research. In particular, it will be important to have objective, scientific answers to questions in these eight areas:

  1. Effects of changes on the capacity of public programs and the private health care market.
  2. Extent to which managed care entities achieve integration of services.
  3. Impact on quality of care for the average consumer and for vulnerable subsets of the population.
  4. Effects of changes in the marketplace on access to care.
  5. Impact of market changes on the equity or distribution of costs and benefits across socioeconomic lines.
  6. Changes in health status.
  7. Extent to which these social experiments result in the anticipated individual behavior (e.g., will Medicaid beneficiaries decrease use of emergency services?).
  8. Effects of these changes on costs for all payers (i.e., direct public program expenses, plan payments, out-of-pocket payments, uncompensated care, and costs incurred by other State and local programs).

Our ability to answer these questions at the national level will be enhanced as a result of the new integrated survey design developed by the U.S. Department of Health and Human Services, which will encompass most of the department's health data collections. Efficiency and analytic power will be increased by linking these surveys, which cover all aspects of health care status, use, costs, and financing by type of service, source of care, and type of payment.

Beginning this year, AHCPR's Medical Expenditure Panel Survey (MEPS) will be fielded. MEPS is a longitudinal survey with a national sample of 10,000 households. Data will be collected from families on costs, coverage, benefits, health status, income, and access to care. As part of MEPS, an employer survey will collect information about health insurance levels, premiums, payout ratios, and so forth, for the families in the household component and for a State-by-State sample of employers. [Editor's note: See the July-August 1996 issue of Research Activities for a more complete description of MEPS.]

In meeting the new challenges that lie ahead, it will be important for agencies and organizations to apply the best science available to the question of what does and does not work clinically, through outcomes research, effectiveness research, and technology assessment. A recent analysis of AHCPR's outcomes research and clinical practice guidelines, for example, identified many clear ways in which plans and providers could improve quality and reduce costs. Even assuming a conservative guideline adoption rate of 1 to 20 percent, annual projected cost savings approached $175 million per condition for practice guidelines that were adopted, note Dr. Gaus and Dr. Fraser.

Finally, the authors points out that in light of the budget constraints now facing Government and foundations, the new research paradigm will call for increased collaboration and new partnerships among researchers from all sectors. For example, through public-private partnerships, many States and communities are designing and implementing systems to assess community needs and track the ability of the market to meet those needs.

For more information, see "Shifting paradigms and the role of research," by Clifton R. Gaus, Sc.D., and Irene Fraser, Ph.D., in the Summer 1996 issue of Health Affairs 15(2), pp. 235-242. Reprints (AHCPR Publication No. 96-R107) are available from the AHCPR Publications Clearinghouse.

AHCPR releases guideline on early Alzheimer's disease and begins new focus on gathering science-based evidence

Significant mental impairment is not a part of normal aging and should be a signal for action on the part of clinicians, patients, and family members, according to a new clinical practice guideline released in September by the Agency for Health Care Policy and Research. In approximately 20 percent of cases, signs of decline are not due to Alzheimer's disease or related dementias but result from other conditions that are treatable.

The guideline is an evidence-based resource to help distinguish between normal age-associated changes in cognitive ability and the early symptoms of Alzheimer's disease, according to Paul T. Costa, Jr., of the National Institute on Aging, and co-chair of the panel of public- and private-sector experts responsible for the guideline. The guideline provides the tools clinicians need to conduct an initial assessment when symptoms suggest possible dementia. Early recognition of Alzheimer's disease and related dementias can prevent costly and inappropriate treatment and give patients and family members time to address the complex financial, legal, and medical issues these conditions present.

According to the guideline, increased difficulty with activities such as learning and retaining new information, handling complex tasks, reasoning, and spatial ability and orientation might be symptomatic of Alzheimer's disease. Symptoms like these should trigger a clinical assessment. A family history of dementia and/or Down syndrome are risk factors that also merit special attention.

An initial clinical assessment should combine information on the symptoms' onset, progression, and duration; results of a physical examination; an evaluation of mental and functional status; and reports from family members and/or friends. Clinicians also should assess and consider other factors, such as physical disability, and they should rule out delirium and depression.

Patients who are depressed, taking multiple medications, or abusing alcohol often are misdiagnosed or not treated because their symptoms are confused with Alzheimer's disease or other dementias, according to T. Franklin Williams, M.D., F.A.C.P., Professor of Medicine Emeritus, University of Rochester Medical Center, and guideline panel co-chair. Depression is the most common psychiatric illness in older persons, and can be difficult to distinguish from dementia.

When findings of an initial evaluation point to Alzheimer's disease, the AHCPR-sponsored guideline recommends further clinical evaluation and stresses the importance of followup and continuity of care. Only when the initial assessment is complete is it appropriate to conduct laboratory tests, and then only when the clinician has determined that the patient's ability to function is declining, delirium and depression have been excluded, and other factors and medical conditions have been ruled out.

Followup and continuity of care, which facilitate the patient's and family's ability to make informed decisions, are crucial to accurate assessment and the patient's well-being. Followup, with assessment of declining mental function, may be the most useful diagnostic procedure for differentiating Alzheimer's disease from normal aging.

AHCPR's clinical practice guideline on Alzheimer's disease is the Agency's final guideline and marks a transition in the guideline program. AHCPR's guideline program has been restructured in response to requests from public- and private-sector guideline users seeking the scientific foundation to develop their own high-quality, evidence-based guidelines. This new focus will allow the Agency to use its resources to develop a broader base of scientific information that will enable more guidelines to be developed. In the future, AHCPR will serve as a "science partner" with other organizations by providing evidence reports that will include literature reviews, evidence tables, decision analyses, meta-analyses, and other products.

An Overview for clinicians and consumers (AHCPR Publication No. 96-R123) of the Alzheimer's clinical practice guideline, and the Consumer Version, Early Alzheimer's Disease: A Guide for Patients and Families (AHCPR Publication No. 96-0704), are available online.

The documents, Recognition and Initial Assessment of Alzheimer's Disease and Related Dementias, Clinical Practice Guideline No. 19, and Early Identification of Alzheimer's Disease and Related Dementias: Quick Reference for Clinicians, are in production and will be available later this year. Watch for an announcement of their availability in an upcoming issue of Research Activities.

Consumers and health care professionals view quality of care differently

Consumers and health professionals think differently about what constitutes quality of care, according to a report issued by the Oregon Consumer Scorecard Project (OCS Project). The OCS Project, funded by the Agency for Health Care Policy and Research, examined other scorecard efforts nationwide and developed and focus-group tested a number of different formats and presentation methods in reaching their conclusions.

In addition to helping Oregon achieve its public health policy goals, the OCS Project provides a model for other States to follow in their efforts to develop scorecards. According to Clifton R. Gaus, Sc.D., AHCPR's Administrator, the OCS Project represents a significant step forward in designing tools consumers can use to make more informed choices about their health care needs, especially consumers in rural areas and persons with significant chronic health conditions and/or disabilities.

The OCS Project, directed by Pamela Hanes, Ph.D., of the Oregon Health Policy Institute, revealed that consumers judge health plans, and health professionals and facilities, on the basis of very personal measures, such as how they gain access to specialty care for acute and/or chronic conditions. Health professionals, on the other hand, use population-based performance measures in judging quality of care, such as outcomes of cancer treatment over time and growth and development indicators for children. These kinds of measures currently have little meaning for most consumers, yet their potential to shape quality of care and hold health plans accountable is great.

Among the Project's other major findings are that:

  • Consumers prefer having a variety of formats for reviewing information about health care plans and providers, but printed scorecards should always be available because of their lower cost and ease of distribution.
  • Regardless of the scorecard format, consumers need access to a "personal guide," a trained, knowledgeable individual who can assist consumers with scorecard information.
  • Consumers expressed a strong desire for information that describes health plans in their own geographic areas, as opposed to information that evaluates plans throughout the State.
  • Consumers are savvy about marketing techniques; what they want is information on the real differences between health plans.
  • Health plans face a "data burden" that is costly and could be relieved by establishing uniform standards for all health plans and purchasers. These standards would need to be independently audited to assure compliance with data specifications.

The OCS Project was carried out through AHCPR's regional Rural Center at the University of Washington and the Oregon Health Sciences University, Portland. The Project was conducted on behalf of the Oregon Consumer Scorecard Consortium, a public-private partnership created to develop a reliable source of health plan information for consumers. The final report (AHCPR Publication No. 96-N027) is in press and will be available from AHCPR in February 1997 from the AHCPR Publications Clearinghouse.

New consumer guide talks about safe, effective use of prescription medicines

A new booklet released recently by the Agency for Health Care Policy and Research gives consumers the information they need to talk with their doctors, pharmacists, and other health care professionals about using prescription medicines safely and effectively. Prescription Medicines and You: A Consumer Guide was developed through a partnership between AHCPR and the National Council on Patient Information and Education (NCPIE).

Over two-thirds of physician visits end with a prescription being written. Yet, for some illnesses, up to half of all patients do not take their prescription medicines correctly, often because of a lack of information, according to NCPIE Chairman Paul G. Rogers, J.D. For this reason, it is very important for patients and health care professionals to work together. For this partnership to be successful, patients need to know which questions to ask and what they should tell their doctor, pharmacist, or nurse to help them get the most from their medicine.

The booklet urges consumers to get involved in their prescription medicine use by taking part in decisions about their treatment, following their treatment plan, and watching for problems and getting help in solving them.

NCPIE, formed in 1982, is a nonprofit coalition focused on improving communication between health care professionals and patients about prescription medicines. This is accomplished through a variety of educational resources; consumer, patient, and health professional awareness campaigns; and conferences. NCPIE's membership includes nearly 300 organizations representing health professionals, consumers, pharmaceutical companies, voluntary health agencies, managed care organizations, and the Food and Drug Administration.

NCPIE sponsors the annual "Talk About Prescriptions" Month each October. This year's theme is "Team Up and Talk About Prescriptions."

New audiotape presents information for consumers who have vision problems

The Agency for Health Care Policy and Research has produced a new audiotape to help consumers make informed decisions about surgery and pain control after surgery. The audiotape is a narration of two AHCPR booklets, Be Informed: Questions To Ask Your Doctor Before You Have Surgery (Side A) and Pain Control After Surgery—A Patient's Guide (Side B). Side A provides 12 questions for patients to ask their primary care doctor and surgeon before having surgery—and tells why each question is important. Side B explains treatment options and provides other information to help patients suffering from postsurgical pain.

Free single copies of the audiotape (AHCPR 96-DP02) are available from the AHCPR Publications Clearinghouse. Supplies are limited. Copies are also available from the Library of Congress' Regional and Subregional Libraries for the Blind and Physically Handicapped. Contact your local librarian for more information. Both brochures also are available online. Select Be Informed: Questions To Ask Your Doctor Before You Have Surgery or Pain Control After Surgery.

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