Policy Resolution HHS-15-32
WHEREAS, the National Black Caucus of State Legislators (NBCSL) maintains a strong commitment to using evidence-based approaches in all policy-setting and, therefore, pursuing research and quality data collection in order to identify evidence-based solutions;
WHEREAS, Real World Data refers to any healthcare data collected outside of a clinical trial setting;
WHEREAS, stakeholders are expanding their collection and analysis of healthcare data to better define, measure, and pay for high quality care;
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);
WHEREAS, patient privacy is paramount, and should be safeguarded and respected with any data collection;
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 Real World Data are increasingly being used for both clinical and policy decision-making.
THEREFORE BE IT RESOLVED, that the National Black Caucus of State Legislators (NBCSL) encourages state legislators and other policymakers to examine allowing qualified researchers to have access to state level 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 NBCSL believes that as access to such data is given, legislators and policymakers must also make certain the privacy and security of patient information is protected in order to preserve the confidentiality in the patient-physician relationship;
BE IT FURTHER RESOLVED, that NBCSL urges states to 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; and
BE IT FINALLY RESOLVED, that a copy of this resolution be transmitted to the President of the United States, the Vice President of the United States, members of the United States House of Representatives and the United States Senate, and other federal and state government officials as appropriate.
- SPONSORS: Senator Constance N. Johnson (OK) and Senator David Haley (KS)
- Committee of Jurisdiction: Health and Human Services Policy Committee
- Certified by Committee Chair: Senator Willie Simmons (MS)
- Ratified in Plenary Session: Ratification Date is December 12, 2014
- Ratification is certified by: Representative Joe Armstrong (TN), President