The fast route to evidence development for value in healthcare

Abstract

Over the past 30 years, our greatest accomplishments in advancing understanding about the safety, effectiveness and value of healthcare interventions have been achieved through the availability and accessibility of health insurance claims for large populations and, more recently, access to pockets of electronic health records that can be linked to information on expenditures, outcomes and patient experience. Although useful, this data lacks clinical detail and patient relevance. Going forward, we need qualified data networks that understand their data, have a research administration in place to evaluate requests, obtain institutional review and transfer data – all on a timely basis. The mecca of health information will be networks with comprehensive electronic health records that are able to collect and link supplementary data collected from clinicians, tissue banks, etc., and/or directly from patients, including information on quality of life and other patient-reported outcomes. A combination of data collected from clinicians, patients and health systems will provide details about treatment use, patient characteristics and health outcomes that are not consistently available in a patient’s medical record, including whether prescriptions were actually filled, and if patients were hospitalized or had other costly healthcare that may not have been reported to their network doctors. We need a simple process to serve as a gateway to identify qualified research partners, the types of data each has access to, and how to work with them. The best partners will have established processes for contracting, prompt and informed institutional review, and data integration including supplementation from patients, clinicians and others, as needed, to support evidence generation that is more nuanced than simply choosing treatments based on how the average patient would respond.