2014-04

Ensuring Access to State Level Publicly Funded Real World Datasets to All Qualified Researchers

REPRESENTATIVE LOUIS RUIZ (KS) HEALTH CARE TASK FORCE

WHEREAS, “Real World Data” (RWD) refers to any healthcare data collected outside of a clinical trial setting; and

WHEREAS, stakeholders are expanding their collection and analysis of healthcare data to better define, measure, and pay for high quality care; and

WHEREAS, States are in the beginning stages of developing health data networks that collect claims data and/or clinical data through the establishment of All--?Payer Claims Databases (APCDs) and Health Information Exchanges (HIEs); and

WHEREAS, these data have been used to assess the effectiveness and safety of healthcare services and medicines, leading to the adoption of more effective medical practices; and

WHEREAS, analyses that use RWD are increasingly being used for both clinical and policy decision--?making;

NOW THEREFORE BE IT RESOLVED, that state legislators and policymakers must ensure that all qualified researchers have Access to state level publicly--?funded real--?world datasets like APCDs and HIEs as this will enhance the delivery of care including medical procedures, drug development processes, and the understanding of the safety and efficacy of pharmaceutical products outside the clinical trial setting;

BE IT FURTHER RESOLVED, that as Access to such data is given, legislators and policymakers must also make certain that the privacy and security of patient information is protected in order to preserve the confidentiality in the patient--?physician relationship;

BE IT FINALLY RESOLVED, that states shall require researchers to abide by transparent and replicable research methods to ensure the collection of high quality and relevant health data that could be leveraged for research purposes.

RATIFIED ON DECEMBER 9, 2014 AT THE NHCSL ANNUAL MEETING HELD IN SAN JUAN, PUERTO RICO.