Improve Data Sharing, Analysis, and Monitoring

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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 will need to understand how the community perceives a number of elements of addiction, as well as what resources are already at work across the many stakeholders set in your 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 the identification of the right data and the conversion of that data to information that can be used within the social system is essential.

Key Information

A key goal of any effort to address the current epidemic is to use multi-sector data to inform assessment, planning, and implementation. It is not uncommon for most communities to have to break down existing data silos so that various public, private, and community partners can engage effectively. This process is important because it increases understanding and fosters collaboration. All participants need to understand what is happening in their community in order to have agreement about what strategies would be most effective.

Where to Start and Key Questions to Consider
Drug misuse and SUD are complex problems requiring a complete set of solutions. Data collection and building a sufficient data set can often be challenging, so communities should expect to be met with some level of resistance. Many agencies who represent important sources of data are often not accustomed to working with others and sharing the data they have available. There might be questions of confidentiality, and many communities work hard to establish trusting relationships with outside entities. One way to overcome this challenge is to first establish an identified leader(s) to coordinate and gather needed data and regularly summarize and report on data findings. These 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 and other sources to determine what data each has, if they are willing and able to share it, and what restrictions may exist in doing so. 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 communities, there may not already be a data collection effort across the entire system. In that case, start with your exploration of data by looking at 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 data is 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 we collecting data?

This starting point typically leads to other questions that require additional data in order to identify gaps in services and the implementation of strategies to fill such gaps. Some examples might include:

  • 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 are we currently doing? Are overdose prevention services being offered in areas with high overdose rates?
  • What drugs are residents using? What are the trends? What are youth substance use 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?
  • 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?

Other Potential Data Sources
Before collecting any new data, the next step is to scan existing sources and locate the data. Identify where the data is currently being captured and who has access to the needed data. Perhaps, your community has already conducted a recent needs assessment? During this process, you may find that some data is missing or interpreted differently across organizations. Spend time with administrators discussing how they compile their data and what data elements are composed of specific indicators. To make sure your data is statistically sound and there are no errors, it is important that administrators are working from the same definitions and make an effort to link potential data sources where applicable.

In some cases, you may be able to access local data through public records. Common sources and the types of data organizations can typically provide 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)

The Story Behind the Data

Communities should explore the ultimate root cause of the problem that might not be immediately apparent. In addition to the availability of quantitative data, communities may capture and track qualitative data to describe the story behind the numbers through community surveys, listening sessions, public forums, interviews, observations, case studies, or focus groups that analyze trends in drug use, types of drugs, and community perception of the problem. For deeper examination, ask questions about accessibility, affordability, availability, and cultural relevance of programs and policies. As you seek input, honor the perspectives and voices of those who will be most impacted by the coalition’s decisions and engage with individuals who you are directly trying to serve in discussions and decision-making in order to understand barriers that residents face. And, if you are able, provide compensation for their time.

Scanning Community Resources

Sometimes when individual community sectors do their work to mitigate the opioid and addiction crisis, they are so busy doing good work that they aren’t aware of other services the community offers and how they might interact. They don’t have the time to survey the landscape and see what else is available. Focusing your community’s efforts does not mean doing only one thing to combat the epidemic. By identifying your community’s attitudes and perceptions, as well as gaps in services, you will be better able to focus your available time and energy on paths that have the most opportunity for impact.

Reviewing Your Assessment

Once you have reviewed any existing data, work alongside your stakeholder group or coalition to identify any gaps in data and determine if any new data should be collected. Did you find everything you were looking for? How will we know when we have enough data? Communities can spend a lot of time analyzing and discussing data. While data should be at the forefront of the coalition’s decision-making, it’s important to balance how much time is dedicated to data discussions, in order to move from planning toward prioritization and action.

Tracking and Monitoring Data

Communities might initially collect only baseline data, but the benefits of tracking data trends over time include accountability, monitoring changes with statistical significance to act more swiftly, influencing policy, and being able to communicate and raise awareness about a particular problem. The identified lead should determine the frequency on how often to collect data and coordinate collection efforts to regularly monitor data. Where communities are able, they should disaggregate population level data by race and ethnicity to identify disparities. Other options for how to disaggregate data include: age, sex, veteran status, marital status, education, citizenship, disability status, primary language spoken at home, and employment status. Similarly, communities can use their data to drill down to specific areas in the community to explore gaps in access to services and ensure appropriate allocation of resources by analyzing data by city, village, service area, neighborhood, district, or even census tract. To help put your community data into context of the bigger picture, you may consider comparing your data or benchmarking across other communities with a similar makeup at the state and even national levels. Some national sources of data might include:

  • Centers for Disease Control (CDC) [1]
  • Substance Abuse and Mental Health Services Administration (SAMSHA) [2]
  • National Survey on Drug Use and Health [3]
  • Robert Wood Johnson County Rankings and Roadmaps [4]
  • U.S. Census Bureau American Community Survey (ACS)[5]

Reporting Data

It will be up to each community to decide what data to collect and report about, and what data should be made public. The data report should continually educate and drive informed decision-making. Data used to track the number and locations of overdoses, for example, can provide the community with the knowledge of where overdoses are taking place and what hot spots exist. This allows a community to focus resources where they are needed by adding or expanding services like those related to prevention, harm reduction, and connection to services through peers or other means. Other parts of the reports may include available treatment and recovery housing beds, naloxone distribution numbers, number of prescribed MAT in various settings, number of interventions, and so forth. What is required is what is needed to first guide strategy and then be able to track the effectiveness of those strategies over time.

Analysts may choose a variety of methods for sharing their data, including Geographic Information Systems (GIS), line graphs, bar charts, tables, and pie charts. It is critical for an analyst to use care when displaying and illustrating data because it is important to find a balance between creating a visualization that is effective and provides a picture for their audience, but also doing it in a way that accurately displays the data rather than skews the interpretation. Charts and graphs should be easy to read, aesthetically pleasing, well-labeled, include the totals for columns and rows, be scaled accurately, and developed with the audience in mind. Illustrate the most important information and keep the graphic simple. Research best practices or ask for help if you are not well versed in the creation of charts and graphs.

Data Systems

To maintain a strong data infrastructure, communities have a variety of options. Investments in off-the-shelf software systems are available for purchase and can help to combine and monitor data from various state and local organizations, provide a connection to services, and serve as a tool for tracking system performance indicators and outcomes over time. If there is limited funding available, communities can do this using spreadsheet or database software (like Microsoft Excel or Access).

Making Data-Informed Decisions

A targeted data collection and analysis effort will enable decision makers to develop effective approaches to achieve results. Continued communication and sharing of data is key. This will lead to greater collaboration between agencies that have and share data as well as other community stakeholders involved with developing and implementing strategies and programs. These community stakeholders can help "translate" the data from multiple sources to help with decision-making. Often new partnerships are forged when the data reveals what needs to be addressed and who can effectively address those identified needs.

Another common lesson learned from experience is that decision makers need to be willing to experiment and constantly adjust the approaches they take. Even at the local level, aspects of this epidemic change and sometimes change rapidly. Leaders need to continually collect and analyze data in order to detect these changes and make adjustments.

Impactful Federal, State, and Local Policies

Often, when agencies wish to share data, some type of data sharing agreement is required. Parties will want 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 counsel in order to address privacy issues and compliance with laws and regulations, there are many boiler-plate examples that can be used and altered to meet the requirements of most agencies and other community partners. It is important for communities to understand the federal and state legal framework since some data might contain protected health information. 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. [6]

Available Tools and Resources

  • Harvard Institute for Excellence in Government – Includes case studies on data-driven approaches.[7]
  • SAMHSA has compiled extensive information on the Strategic Prevention Framework (SPF), a data-driven approach. 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" [8] and "Selecting Best-fit Programs and Practices: Guidance for Substance Misuse Prevention Practitioners." [9]
  • SAMHSA Welcome to the Data Analysis System for SAMHSA Studies. Explore and analyze substance use and mental health data to better understand critical public health issues. Run a quick crosstab analysis and view your results as tables and charts. [10]
  • The Monitoring the Future Study [11] 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).
  • The SAFE Community Pulse Survey in SAFE Project’s Community Playbook [12] examines your community’s perceptions of the opioid and addiction crisis through a short survey. It is not meant to be a scientific analysis of attitudes and perceptions, but rather to give you a snapshot of how the community as a whole perceives the issues your coalition will be tackling. This is also a great way to let the broader community know about your 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 in SAFE Project’s Community Playbook [13] 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.

Promising Practices

In many cases, not all data collected will be made public. However, developing a data report that is made public is done by most communities due to the fact that it raises awareness about the problem and the real impacts it is having within the community. This can be done through a dashboard or other regularly updated reports made available by the local government or a local task force/opioid response team where they exist. Three examples follow:

  • Cincinnati Overdose Response [14]
  • New Hampshire Drug Monitoring Initiative [15]
  • New Jersey Overdose Data Dashboard [16]