Information Needs Associated with the Changing Organization and Delivery of Health Care: Summary of Perceptions, Activities, Key Gaps, and Priorities. A. Focus and Content of Data Collection Efforts


In the first phase, we identified 23 efforts that fell within the scope of our study and into one of three groupings. One grouping is of on-going national efforts, the second is of other national efforts, and the third involves other more limited efforts but still of interest nationally. In the second phase, we obtained more information on 11 of these 23 efforts. Below we review all 23 by grouping and the rationale for the 11 selected. Table 7 summarizes the 11 efforts selected for more intensive study. The table also presents the impetus for their development, the activities underway, and the limitations of the work as perceived by the sponsors.

Of the 23 efforts, the following seven are national and broad-based in scope and will have an ongoing operational effect on data.

  • The American Association of Health Plans is redesigning its annual survey to reflect a broader definition of managed care products and needs for more information on operational features of health plans.
  • The American Association of Homes and Services for the Aging is helping its members obtain meaningful benchmarks of performance for internal management and other activities.
  • The American Hospital Association is redesigning its data collection process to better support an understanding of system integration and managed care.
  • The American Medical Association is adding items to surveys in order to better capture physician group and managed care activity.
  • The American National Standards Institute is working to enhance operational standardization of claims, employer enrollment, and benefit explanation in operational practice.
  • The Association of American Medical Colleges is working to make better use of internal and external data to monitor the changing marketplace and its implications for members, and to help members respond to these changes.
  • The National Committee on Quality Assurance is developing HEDIS 3.0 to support purchaser and consumer interest in performance information on health plans in order to facilitate choice and to help health plans anticipate information needs so they can reconfigure their systems to generate this information. Because of their national scope and importance, all of these efforts were selected for more intensive review, with the exception of the work by ANSI, which was already familiar and well known to HHS staff.


Impetus Activity Constraints & Perceived Limitations
Alpha Center
The changes in the health insurance industry are generating information needs which are hard to address from existing sources. For example, how can the exit from markets be assessed? What is the impact of for profit conversion? The information will be used to assess the changing market, study a subset of individual insurance markets, and assess Medicare reform options. With funding from RWJF, KFF, and the Anders Foundation, Alpha is trying to develop a national database of health insurers using NAIC- based information along with information on Blues plans and HMOs.

Quality of reported data is poor.

Limited data on HMO, small group and individual markets.

General limitations with insurer data.

Lack of consistency across NAIC reported information.

American Association of Health Plans
Policy environment generates needs for more information on operational arrangements to support lobbying, clinical activities. Merger of GHAA/AMCRA generated need for comparable information across managed care entities.

Redesign annual HMO survey and associated definitions in collaboration with Harvard. Focus on organizational and delivery aspects of health care plans. Sampling from plans/legal entities within states.

Note: financial and utilization information collection has been reduced considerably as part of this shift.

Short time frame to develop survey.

Resource limitations preclude PPO sample.

Respondent burden concerns will limit length.

Focus on health plans provides limited information on other key players (e.g., hospitals, physicians) that define health plan structure.

American Association of Homes and Services for the Aging
Desire to provide members with meaningful information to benchmark financial, quality and cost performance. Need to help members with internal management needs, and for negotiation and forecasting at the market level.

Worked with Ernst & Young to develop benchmarks for continuing care retirement communities. In 1995, pricing and salary information was also collected.

Convene taskforce of members across nonprofit continuum to expand and refine benchmarks and definitions.

Lack of standardized definitions for entity type and broadness of individual data elements have limited ability to compare.

Lack of timeliness has limited utility.

Task force will aim to address common definitional barriers.

American Hospital Association

Market changes require more information on the health systems in which hospitals are embedded, including structural linkages.

Policy environment generates a growing need for population based measures and also flexible information systems that can respond to changing needs.

Desire to generate revenue through new sources of income and also address member concerns over response burden.

Redesign Annual Survey in 1994 building on joint work with HRET and research community. Items were added to obtain more information on affiliations, participation in managed care and community service.
Considerable reductions were made in requests for financing, staffing and facility information. In 1995, the timing of the survey was modified to match hospital’s fiscal year to reduce burden.

Gather information to identify and profile 500 networks. Published in the AHA Guide and used in research to develop a taxonomy of networks (under AHCPR grant).

Create a separate data and information division with the goal of generating revenue producing commercial products.

Limited revenue to support data activity, in part because of how market change has influenced association membership and revenue.

Need to limit data requests and burden in response to industry concerns.

AHA perceives information on linkages among health system players to be a “huge gap” in information needed to understand the system. They feel their efforts address only a share of the issues and are limited by resource constraints.

Network information limited by willingness of systems to provide information because of burden and competitive concerns.

Effort at revenue generation will need to be balanced to assure continued credibility with and support from members.

American Medical Association
Need to understand how market change (consolidation, transformation, new contractual arrangements) will affect physician incentives, independence and income as well as quality of care. Strong interest in understanding who bears financial risk and the implications.

Focus special topics in SMS monitoring system, subject to resource constraints.

Census of medical groups expanded  items on relationship to HMOs.

Joint activity with Hewitt to obtain survey information on physician view of  managed care.

General concern that growth of managed care is eroding encounter database. Also concern that more activity is occurring at physician group level, which is hard to capture.

Resource constraints which have limited scope of effort (e.g. special topics in SMS)

Group practice survey response rates are dropping. Hewitt effort limited by lack of follow up and low response rate.

Association of American Medical Colleges
General need to help members by better tracking what is occurring at teaching hospitals in the context of broader health system change and help members to position themselves internally and in policy debate.

Establish Center for the Assessment and Management of Change in Academic Medicine to analyze impact of market on academic programs and help members adapt. Involves linking various internal & external data for AAMC members. Medical student information to be extended into practice.

Acquire clinical-administrative Services Database to establish Sentinel Network for trending performance and outcomes.

Online activity to support members.

Definitional limitations.

Understanding affiliations of AMCs with clinical enterprises.

Inability to capture key health system information needs (e.g. change in primary care practice)

Lags in data.

On line security.

Definitional issues

Center for Studying Health System Change (an RWJF funded center)
RWJF perceived need to provide timely, objective information on rapid changes in health system and their effect on people at local community as well as national level.

Community Tracking Study of randomly chosen communities, 12 at high intensity study and 48 at low intensity study. Includes site visits (to 12), household, physician, and health system organization surveys.

Special projects using existing data and qualitative insights on rapid turn-around basis.

Scope and complexity requires constant context trade-offs of precision and timeliness vs. breadth and depth.
Florida Medical Care System Study (state agency with RWJF grant)
Generate data to support state-wide health reform by providing objective, comparable information on quality and costs of health plans. As gaps in data identified, they sought to generate information to better understand changes.

Mail survey of physicians about their understanding of arrangements and activities related to managed care.

Case studies.

Very long survey and very low response despite active follow-up.
Minnesota Health Data Institute (Public-Private Consortium)
Outgrowth of state health reform effort which highlighted gaps in consumer information, data to monitor performance.

Performance measurement effort to generate survey-based and other performance measures of health plans and providers that consumers and purchasers can use.

Electronic data exchange.

National Committee for Quality Assurance

Perceived need by purchasers and consumers for performance information to facilitate health plan choice.

Concern over the availability and quality of clinical data from health plans and the willingness of plans to share information

HEDIS 3.0, an ongoing effort to develop standardized performance measures for public and private purchasers on a variety of areas. Periodic testing and updates to address outstanding concerns (e.g. chronic care, publicly insured individuals). On line reporting of some measures as well in Quality Compass. (Combines HEDIS, accredation information on plan specific basis).

RWJF funded work by NCQA’s Committee on Performance Measures to provide a road map for plans to use in anticipating future information system needs.

Decreased willingness by plans to provide and share information as competition becomes more intense.

Absence of active federal role to move audit standards and data sharing forward to benefit the consumer.

Measures limited by weaknesses in current clinical and administrative data systems.

National Institute on Health Care Management
Desire for consolidated resource with state and market level information that could serve as tool in health reform debate. Develop DataSource (released July 1996), under contract with UCSF. Provide state and MSA data on people, payers providers, and policy variables information. Compiled using contact with over 75 public and private organizations.

Identified a number of by gaps as a result of their activity including:

State and local estimates.

Limited information on purchasers, contribution, premiums, health plan and provider performance measures.

Proprietary sources not releasable or, in cases prohibitively expensive.

Quality and documentation limited across available data.


The second grouping comprises seven national efforts. They are conceptual rather than operationally oriented or are otherwise limited in their periodicity or in other features relevant to providing ongoing national data. Two of these seven are federal efforts that address information needs associated with a changing marketplace. The Agency for Health Care Policy and Research (AHCPR) is both sponsoring research on market forces in managed care and disseminating the result of this research. The NCVHS is working to better standardize data, as described. Like the ANSI work, they were excluded from more intensive review since they are familiar to HHS staff. The  other five efforts in this category are:

  • The Center for Studying Health System Change, funded by the Robert Wood Johnson Foundation, is conducting the Community Tracking Initiatives, which involves ongoing monitoring of 48 nationally representative communities through household, provider, health plan and other surveys. Twelve of the communities are being studied in more depth through site visits and expanded samples.
  • The New Federalism Project at the Urban Institute sponsored by the Annie E. Casey Foundation, the Kellogg Foundation, the Henry J. Kaiser Foundation, and the MacArthur Foundation is working to develop timely state-level tracking of current efforts to decentralize social programs, including analysis of national data, a household survey, and site visits to a subset of states.
  • The National Association of Insurance Commission’s Health Plan Accountability Workgroup is developing model statutes for states to use in setting standards for managed care plans in the areas of quality, credentialing, utilization review, grievance procedures, and network adequacy. The association is also beginning to work on data-reporting activities and confidentiality issues associated with information exchange.
  • The ALPHA Center is conducting a project to develop a national database on health insurance, supported by funding from the Robert Wood Johnson Foundation’s state initiatives program, the Kaiser Family Foundation, and the Anders Foundation. The database will build on state insurance filings under commercial, nonprofit, and HMO authority.
  • The National Institute for Health Care Management is conducting a project to develop, under contract with researchers at the University of California at San Francisco, a reference database that synthesizes all the available metropolitan and state-level information in several areas of concern about markets.

Three of these five were studied in more depth. Efforts by the NAIC were excluded since they are familiar to HHS staff and completed efforts are not directly related to information development. The New Federalism Project was excluded because it focuses more on information about federal programs and their effects on people than on the supply side of the health system and its change.

Efforts in the third grouping have potential interest though they are not necessarily national in scope or are otherwise limited. We identified nine such efforts, selecting two for further study in their own right and a third in conjunction with our assessment of the AMA efforts. These three are:

  • The state of Florida, supported by a grant from the Robert Wood Johnson Foundation under the state initiatives program, is developing information on the changing marketplace in Florida, including physician arrangements.
  • The public-private partnership reflected in the Minnesota Health Data Institute focuses on increasing the availability and accessability performance information on health plans and providers.
  • Hewitt Associates is collaborating with the AMA to survey physicians to assess their satisfaction with managed care.

Another three of the nine efforts in this category involve work by other states to address information needs. All are of interest but were excluded mainly because of resource constraints and because they are similar to others selected or because they are in somewhat unique environments. These efforts include the Massachusetts’ Health Data Consortium, which is focusing on enhancing the availability of standardized data; Maryland’s Health Care Access and Cost Commission, which is working to develop both HMO report cards to measure performance and better data from insurers to develop better state expenditure estimates; and Washington State’s effort to establish the Foundation for Health Care Quality, a public-private partnership to improve health information network capabilities in the region.

The other three excluded efforts also are interesting but were excluded because they are more familiar to HHS or viewed as sufficiently covered in the first phase. They are RAND’s work with states on health expenditure accounts under the Robert Wood Johnson Foundation’s state initiatives program; the Foundation for Accountability’s work to develop outcome-based quality measures purchasers could use to assess health plans; and the National Association of Health Data Organization’s synthesis of state systems for hospital discharge and ambulatory care reporting of encounter-level information.

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