Registry-Based Medical Research: Data Dredging or Value Building to Quality of Care?

Abstract

Registry-based medical research is an important tool in assessing health care interventions in the general population. Observational studies are used to establish effectiveness whereas randomized clinical trials assess efficacy in an experimental manner targeting a carefully selected population of patients. Medical registries may be office or hospital based, state/provincial, national, or more recently, global. Their role in postmarketing pharmacosurveillance is effective in detecting early adverse events and long-term benefits. Surgical disciplines use registry data to discover early device or prosthesis failures. Payers and administrators depend on medical registries to measure cost effectiveness (value). Patients are the ultimate beneficiary in terms of quality care. Current medical registries benefit from the explosion in medical informatics. The growth in the electronic health record for individual patients and hospitals provides an online wealth of data. The pharmaceutical industry has accurate cost usage data in many jurisdictions. Device manufacturers have upgraded data generated by using unique identifiers and device-generated surveillance alerts. Measurement of surgical innovations by registry is a new challenge. Quality data entry will become more user friendly and at reduced cost. A futuristic medical registry will be Internet based and require a higher degree of collaboration and harmonization to meet societal demand for timely "real world" data in measuring value delivered and accountability. This type of medical registry will only enhance value for patients, for the pharmaceutical and device industries, and for payers and administrators in augmenting quality patient care.