Improve Data Sharing, Analysis, and Monitoring

Introductory Paragraph

Data collection, analysis, and reporting are critical components to strengthening a community’s response to drug misuse and substance use disorder (SUD). By sharing and regularly monitoring data, communities can build credibility, raise awareness and political will, share knowledge, identify more effective interventions and strategies, guide decision making, and allow for better budgeting and allocation of funds. For a community coalition to be successful, it needs to understand how the community perceives a number of elements of substance use, as well as what resources are already at work across the many stakeholders in the community.

Systems-building is a complex process. The role of data in this process can be understood using a chemistry metaphor. Data are the atoms, and in proper combination, they form molecules of information. In complex systems, these molecules interact in a variety of ways. So, having the right amount of data and converting that data into information is essential for the optimal functioning of a balanced system. When the system is out of balance, as we see in the SUD crisis, then it is essential to identify the right data and to convert that data to information for use within the community.

Key Information

Assessment is the first of five phases in SAMHSA's Strategic Prevention Framework (SPF). The collection of data from multiple sectors is vital to inform the assessment, planning, implementation, and evaluation steps in the SPF approach. The first step of assessment is based upon up-to-date and accurate data to support the diagnosis of what is currently happening at the most local scale of community. The planning phase uses the information derived from that assessment data to prioritize optimal implementation strategies. Planning data also fosters coalition capacity-building by using a data-driven approach to reaching agreement about the most effective strategies to implement. The evaluation phase not only uses data to measure outcomes, it also provides a method for communicating success, backed by data, to the community. This creates a new baseline for the coalition to revise its strategies and begin the SPF cycle again -- more effectively.

Assessment of community resources links to the assessment of community needs. The gap between needs and resources creates a clear foundation for next action steps. The collection, distribution, and rapid analysis of data is critically important to developing a strategy to address areas within a community which are being severely impacted by SUD. This typically goes far beyond just tracking overdose deaths and non-fatal overdoses. It is important to know precisely where they are occurring in order to know where more resources need to be deployed. Data are commonly simplified or aggregated into broad geographic regions such as the city or by population characteristics such as race and ethnicity. Using more specific census data requires going to a disaggregated level which can help to identify disparities and to inform policies and practices for specific populations at the zip code, census tract, or even neighborhood level. Such data collection efforts foster healthy equity and can help to more effectively direct appropriate services to targeted areas within the community where they are most needed. This will also help community partners in better addressing the crisis in their specific neighborhoods.

Some examples of disaggregate data include: age, sex, average household income, veteran status, marital status, education, citizenship, disability status, primary language spoken at home, and employment status.

Where to Start and Key Questions to Consider

Drug misuse and SUD are complex problems requiring a comprehensive set of solutions. Building a sufficient data set to support real solutions can often be challenging, so communities should expect to be met with some level of resistance. Many agencies who hold important sources of data are often not accustomed to working with others and sharing their data. Although questions of confidentiality may pose a barrier to data-sharing, many communities have successfully worked to establish trusting relationships between agencies. One key to this success has been having clearly identified leadership to coordinate and gather needed data and to regularly summarize and report on findings. These leaders are often individuals in the public health sector, who have the experience and expertise necessary to collect, analyze, and present data in a way that is clear and easy to understand. Once leadership of the data effort is determined, discussions can take place between agencies to determine data sources, willingness and ability to share data, and any restrictions which may exist. In most cases, all parties want to help save lives and improve their community, and any issues can be worked out with little difficulty.

In some cases, there may not already be a community-wide data collaboration effort in place. The following questions may serve to guide the coalition in launching commitment to such a process:

• What data sources are currently available?
• How are they being used?
• Does the coalition have the partners to provide the necessary data?
• How can the coalition expand the data set to help focus resources where they are most needed, and when they are most needed?
• What can be done in a short amount of time, at reasonable expense, to better collect, analyze, and make use of data related to the SUD epidemic in the region?
• How can the coalition better serve areas of the community that have been underserved?
• What partnerships can help make this happen effectively?
• What drugs are residents using? What are the trends? What are youth substance use rates?
• How many who need medication-assisted treatment (MAT) are receiving it? Does this include the criminal justice system?
• Are recovery support services - including housing, job training, coaching, and education available, and do they meet the needs of the community?
• For those involved in the criminal justice system, is there a history or presence of substance use problems?

It also may help to start with the exploration of data on the most severe harms - including fatal and non-fatal overdoses. Knowing the numbers is important to understand the scope of the problem, but to guide response, more detailed data is usually required. For example:

• Where are the geographic regions of where overdoses are occurring?
• What are the demographics of those areas?
• What type of substance, or combination, is involved?
• How often are such data collecting and analyzed?
• For non-fatal overdoses, how many go to a hospital or community health center?
• How many non-fatal overdoses are revived with naloxone? Who administers Naloxone - first responders or others?
• Are there clusters of overdoses occurring in specific areas and neighborhoods?
• What is currently being done? Are overdose prevention services being offered in areas with high overdose rates?
• What are the local opioid prescribing practices?
• Are people experiencing overdose being connected to services? How is this being done, and by whom?
• Are area treatment and other support services at capacity? Are there wait times or wait lists to get in?

Other Potential Data Sources

Asking any combination of all of the questions above typically leads to new questions which require additional data in order to identify gaps in services and the implementation of strategies to fill such gaps. Before collecting any new data, it is useful to scan existing sources, such as public records or a needs assessment which may have already been conducted that includes some SUD considerations. Common local data sources include:

• Local and State Health Departments (number of overdoses, locations, demographics)
• Fire/EMS Services (portion of overdoses, connection to services, Naloxone administration)
• Police and Public Safety Departments (number of overdoses, drug seizures, drug-related crime, diversion, and MAT in correctional facilities)
• Medical Examiner/Coroner's Reports (cause of death from overdose, type of substance(s) involved)
• 911 Calls (calls related to suspected overdose)
• Local Hospitals and Community Health Organizations (number of non-fatal overdoses, connection to services, naloxone administration)
• Local Harm Reduction Service Providers (Naloxone and needle distribution, connection to services)
• Treatment Providers (treatment capacity and availability, wait times, MAT providers)
• Pharmacies (records on Naloxone distribution to indicate awareness and/or increased use)
• Prescription Drug Monitoring Program (PDMP) (identify high risk prescribers)
• Recovery Support Services (amount and adequacy of peers, availability of housing, access to job training, tracking data on clients remaining in recovery)

To help put community data into a bigger context, it helps to compare local data to other communities with a similar makeup at the state and even national levels. Some national data sources include:

• Centers for Disease Control (CDC)
• Substance Abuse and Mental Health Services Administration (SAMSHA)
• National Survey on Drug Use and Health
• Robert Wood Johnson County Rankings and Roadmaps
• U.S. Census Bureau American Community Survey (ACS)

Telling the Story Behind the Data

In addition to measurable, or quantitative data, a community coalition can use qualitative data to make the issues more personal and relatable. Capturing qualitative data to describe the story behind the numbers can be done through community surveys, listening sessions, public forums, interviews, observations, case studies, or focus groups. Such a deeper examination may identify trends in drug use, types of drugs, and community perception of the problem. This may lead to a better understanding of the root causes of the problem which might not be as immediately apparent using only quantitative data about the problem. This targeted examination can include questions about accessibility, affordability, availability, and the cultural relevance of programs and policies. Honoring the perspectives and voices of those most impacted by the coalition’s decisions helps to increase the engagement of individuals directly being served. Understanding their challenges and barriers creates a foundation for including some of them in the formal decision-making of the coalition. If possible, these community members should be provided compensation for their time.

Another benefit to using qualitative data, is that the process can be used to balance how much coalition time is dedicated to data and to know when they have collected enough quantitative data. The qualitative data help to have a true understanding of what i occurring in their communities and to be able to tell that story in a way that is compelling. quantitive data back up the story. While data should be at the forefront of the coalition’s decision-making, it is important to move from assessment to the action phase of implementation.

Impactful Federal, State, and Local Policies

Federal. SAMHSA promotes a data-driven approach in order to ensure that evidence-based practices are deployed and the optimal outcomes can be known to be achieved. It is important for communities to understand the federal and state legal framework since some data might contain protected health information -- because they are measured. The US Bureau of Justice Assistance has worked with the Justice Center of the Council of State Governments to create a guide about best practices for sharing data across behavioral health and criminal justice systems.

Communities often have to break down existing data silos so that various public, private, and community partners can engage and collaborate effectively. When agencies are ready to share data, some type of data sharing agreement is usually required. Parties will need to know that confidential or other sensitive data will not be disclosed publicly or beyond a limited number of participants. While the creation of such documents is often done by legal counsel in order to address privacy issues and compliance with laws and regulations, there are many existing examples which can be modified to meet the requirements of most agencies.

Available Tools and Resources

• SAMHSA provides online access to national substance use and mental health data and a variety of tools for performing analysis and presentation for communities to utilize. It has also has compiled extensive information on SPF. Two starting points for accessing decades of experience on the role of data processes within SPF can be found in "A guide to SAMHSA’s Strategic Prevention Framework" and "Selecting Best-fit Programs and Practices: Guidance for Substance Misuse Prevention Practitioners."

• SAFE Project provides the "Community Playbook" which is a framework for communities to organize, evaluate, and create the level of change needed to impact the substance use epidemic. It includes tools such as the SAFE Community Pulse Survey and SAFE Community Resources Exercise which are designed specifically to provide the insight a coalition needs to focus and prioritize its work. The Pulse Survey examines community perceptions of the opioid and substance use crisis through a short survey. It is not meant to be a scientific analysis of attitudes and perceptions, but rather to provide a snapshot of how the community as a whole perceives the issues a coalition will be tackling. This is also a tool to let the broader community know about the coalition’s focus and to engage with other community members. Not everyone will agree on the best approaches; the climate survey allows the community to “speak for itself.” The SAFE Community Resources Exercise helps coalition members understand the resources that their fellow members bring to the table as well as to educate the coalition about the depth and breadth of other services that are offered in the community.

• Johns Hopkins Bloomberg School of Public Health has created a database of suggested indicators for monitoring opioid settlement funds. This tool is especially useful for linking the assessment process within SPF to the evaluation phase following Implementation. Opioid Settlement Principles Resource and Indicators (OSPRI) aims to help local government leaders find tangible impact indicators to evaluate community objectives funded by opioid settlement dollars.

• Harvard Institute for Excellence in Government – Includes case studies on data-driven approaches.

• The Monitoring the Future Study from the University of Michigan is an ongoing study that provides communities with data necessary to frame the issue related to the behaviors, attitudes, and values of American secondary school students, college students, and young adults. Each year, a total of approximately 50,000 8th, 10th, and 12th grade students are surveyed (12th graders since 1975, and 8th and 10th graders since 1991).

Promising Practices

Most coalitions choose to make public at least some of the data they collect. A data report raises awareness about the problem, the impacts it is having within the community, and often comparing the community to state or national conditions. This can be done through a dashboard or other regularly updated reports made available by the local government or a local task force. Dashboards often include information about opioid overdoses and other substance use concerns. These dashboards not only helps build public awareness and transparency, but also helps coalitions to support their identified strategies and to report back to their communities on progress over time. Most states and localities who have developed dashboards have greatly expanded available information to include information on other programs and efforts which provide additional opportunities for community members to take action. Three examples of dashboard follow:

• Cincinnati Overdose Response

• New Hampshire Drug Monitoring Initiative

• New Jersey Overdose Data Dashboard