Research > Data Sources

Data Sources to Support Research

The Academy for Health Services Research and Health Policy (formerly the Association for Health Services Research), defines health services research as "the multidisciplinary field of scientific investigation that studies how social factors, financing systems, organizational structures and processes, health technologies, and personal behaviors affect access to health care, the quality and cost of health care, and ultimately our health and well-being."

In this age of information the availability of healthcare data with which to conduct health services research is often lacking. Unfortunately, our healthcare information systems reflect the fragmentation of our system of care in the United States; therefore, comprehensive data sources simply do not exist. Silos of information integral to the delivery and financing of healthcare are available on a limited basis but lack many dimensions necessary for research. To fill these gaps, national surveys and targeted studies have been conducted resulting in ad hoc databases, but connectivity of the information among the databases remains an issue.

As an academically-based health policy and outcomes research center, the Department of Health Policy is uniquely positioned to use an extensive array of databases in our work. Through affiliations and partnerships the Department has access to clinical, financial and operational data that span the continuum of care, as well as access to publicly available data such as national surveys and targeted population-specific databases. In many cases we are able to marry the disparate sources of information that are available to conduct state of the art health services research studies. A partial listing of these sources are described below.

The Jefferson Health System, an integrated delivery system with nine hospitals, over thirty long term care facilities, three rehabilitation hospitals, and a vast network of primary care and specialty care practices, provides a rich data resource for research. The Department has conducted burden of illness studies for a variety of diseases, as well as cost effectiveness analyses for various treatments using clinical and financial data systems for the various system components. Clinical departments within Jefferson Medical College with which the Department has worked closely in the past include: General Internal Medicine, Family Medicine, Cardiology, Neurology, Infectious Disease, Orthopedics, Hematology, Surgery, and Gastroenterology.

In addition to burden of illness studies, the Department has performed quality of care studies in conjunction with hospital and health system management. For inpatient studies, national clinical and operational benchmarking databases such as the UHC (University HealthSystem Consortium), Premier and Cardinal Information System's Atlas have been used. For focused studies, national registries have also been accessed such as the SEER (Surveillance, Epidemiology, and End Results Program of the National Cancer Institute) database and the MDS (Minimum Data Set) for studies in long term care.

The Chairman of the Department, David B. Nash, MD, MBA, chairs the Technical Advisory Group of the Pennsylvania Health Care Cost Containment Council (PHC4), an independent state agency responsible for addressing escalating health costs, quality, and access for all citizens in Pennsylvania. To fulfill their mission, PHC4 is empowered by the state to collect discharge-level clinical and financial data from all hospitals in Pennsylvania. The Department frequently collaborates on research projects with PHC4 staff, and has obtained PHC4 datasets for studies.

The Department has experience working with several large national survey research datasets, especially the Medicare Current Beneficiary Survey (MCBS). The MCBS is a nationally-representative longitudinal panel survey of Medicare beneficiaries that is intended for use in policy studies. Data collected include use of health services, medical care expenditures, health insurance coverage, sources of payment, health status and functioning, and a variety of demographic and behavioral information, such as income, assets, living arrangements, family supports, and access to medical care. Data are collected from each survey participant (approximately 12,000) or a proxy three times a year.

The Department works closely with several managed care organizations in conducting economic analyses and outcomes research projects that rely on claims, membership and associated data files.

Finally, we have established research relationships with several national data warehousing organizations. NDC Health and IMS HEALTH are two of the world's largest multi-segment health information services companies. Through these collaborations, the Department has access to large, rich datasets on pharmaceutical patient use patterns, prescribing patterns, as well as managed care claims, and national inpatient discharge data. We look forward to exploring ways of working together…