Better Data Infrastructure Key to Opioid Use Disorder Treatment, HHS Says
Meeting the challenges of the opioid crisis requires improvements in standardization of key metrics and indicators as well as better registries and more robust linkages to bridge gaps between data sources. A recent report from the U.S. Department of Health & Human Services highlighted several efforts under way to improve the data infrastructure around addressing opioid use disorder (OUD).
In 2017, HHS launched a 5-point strategy to combat the opioid crisis, and one of the five points recognizes the need for better data to inform research and the public health response as the crisis evolves. HHS noted that “the data infrastructure (how data are produced and managed) and the quality and timeliness of the data can make research a challenge.”
Under the Office of the Secretary Patient-Centered Outcomes Research Trust Fund (OS-PCORTF), the Assistant Secretary for Planning and Evaluation (ASPE) supports and coordinates a range of cross-agency projects that address the opioid crisis by improving the quality and timeliness of outcomes data, increasing collection of patient-reported information, and building linkages to address co-morbid conditions that affect patient outcomes. Below are summaries of updates HHS provided of several projects under way.
Improving Timeliness and Quality of Outcomes Data
Information on clinical outcomes (such as opioid-related overdose and mortality) is often incomplete or lacking in quality, which limits its usefulness for researchers. Two Centers for Disease Control and Prevention (CDC) projects are addressing the networks through which data flows to researchers. One project focuses on improving the National Vital Statistics System, specifically the quality, availability, and timeliness of mortality data being reported. A second project is building an opioid-related research network focused on maternal, child, and infant health. These networks facilitate data sharing among clinicians and researchers and will ultimately help generate scientific findings that can guide treatment decisions.
Strengthening Data Infrastructure for Outcomes Research
Begun in 2018, the CDC's project, Strengthening the Data Infrastructure for Outcomes Research on Mortality Associated with Opioid Poisonings, addresses the lack of quality and timely information on opioid overdose deaths. It redesigns and enhances the systems that feed data into the National Vital Statistics System (NVSS). Specifically, the project is working to enhance the Vital Statistics Rapid Release (VSRR) and Medical Mortality Data System (MMDS) to make a broader array of geographic and demographic data available.
MAT-LINK: MATernaL and Infant NetworK
The CDC is seeking to improve the quality and timeliness of outcomes data related to opioid use disorder (OUD) in pregnancy through the 2019 project MAT-LINK: MATernaL and Infant NetworK to Understand Outcomes Associated with Treatment for Opioid Use Disorder During Pregnancy. OUD greatly increases the risk of an infant being born with neonatal abstinence syndrome (NAS); with NAS increasing five-fold between 2004 and 2014. There is a need to fill information gaps when it comes to treatment and care for pregnant women with OUD and their infants and children. MAT-LINK is a surveillance network that collects data, monitors maternal, child, and infant health outcomes across four clinical sites, and disseminates information to improve care.
Building Capacity for Collection of Patient-Reported Outcomes
Collecting patient-reported outcomes (PROs) is critical for understanding the drivers of morbidity and mortality related to OUD, HHS says. Two projects initiated by the National Institute on Drug Abuse (NIDA) are seeking to increase data collection and enhance the health system’s capacity to collect PROs related to OUD. One project targets emergency departments, where many OUD cases are seen, and the other creates a practice-based research network and patient registry to expand data gathering in primary care.
Emergency Medicine Opioid Data Infrastructure
In NIDA’s FY 2018 project Emergency Medicine Opioid Data Infrastructure: Key Venue to Address Opioid Morbidity and Mortality, the agency’s goal is to enhance capacity to track OUD patients in a standard way when they are seen in the emergency department (ED). HHS notes that because EDs are an important point of entry into the healthcare system for many OUD patients, the project seeks to identify common data elements relevant to opioid misuse and OUD, and facilitate reporting of these elements into the American College of Emergency Physicians' Clinical Emergency Data Registry. The project is also exploring the feasibility of collecting PROs related to opioid use (such as overdose risk behaviors and substance use disorder treatment) after an ED visit through a patient-friendly app.
AMNET: An Addiction Medicine Network
To address the ongoing knowledge gaps and need for opioids-related data, NIDA’s 2019 project, AMNET: An Addiction Medicine Network to Address the Opioid Crisis in the United States, establishes a practice-based research network and patient registry. AMNET will gather data for patients treated with buprenorphine and naltrexone in office-based practices, targeting information on patient characteristics, treatments, and outcomes that are needed for research studies. The project took an existing registry (the American Psychiatric Association’s PsychPRO) and adapted it to collect patient-reported data on OUD and treatments, and is developing common data elements for OUDs based on a variety of existing, validated sources. AMNET will be used to provide near real‐time data to clinicians, researchers, and other stakeholders on OUD patients’ mental health, pain, substance use disorders, and treatment delivery in office-based settings.
Building Linkages to Address Co-Morbidities
Understanding co-morbidities is critical to addressing the underlying factors that contribute to opioid-related morbidity and mortality. However, data on co-morbidities is often limited due to a lack of coordination among databases, according to HHS. Two projects are addressing co-morbidities by enhancing existing data sources to better ensure interoperability across systems and building data linkages.
Identifying Co-Occurring Mental Health Disorders
The CDC, in partnership with NIDA, the Substance Abuse and Mental Health Services Administration (SAMHSA), the Food and Drug Administration (FDA), and the National Institutes of Health/National Institute of Mental Health (NIMH), initiated a project in 2019 to build an enhanced, linked dataset on mortality, opioids, and co-occurring mental health issues to provide much needed data for research.
Linking State Medicaid and Child Welfare Data
There is a correlation between areas of the United States with high overdose death rates and high rates of children placed into foster care. OUD, substance abuse disorders, and mental health issues are particularly disruptive to families and the health outcomes of the children involved. A 2019 project is focused on understanding and addressing co-morbidities that affect child welfare. In partnership with several state agencies, the project is pilot testing a linkage between state Medicaid records and child welfare records into a single, harmonized dataset to better understand their treatment needs for substance use disorders like OUD, and co-occurring mental health problems that negatively affect the health and welfare of parents and children.
