Improve Data Sharing, Analysis, and Monitoring

Return to Opioid Top-Level Strategy Map

 

Data collection, analysis, and reporting are critical components to strengthening a community’s response to drug misuse and substance use disorder.  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 stakeholder sets in your community.

 

 

Understanding the Problem

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

Substance use disorder and drug misuse 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 restriction 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 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 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?

Data Sharing Agreements

Collaboration across systems is crucial for any community’s response efforts.  It is important for communities to understand the federal and state legal framework since some data might contain protected health information.  For more information about best practices for sharing data across behavioral health and criminal justice systems, please see here.  

Even in situations where agencies wish to share data, often 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 creating 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. (ADD FOOTNOTE OF 1 or 2 EXAMPLES)

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 comprised 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, but 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/Corners 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 voice 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.  For more information about qualitative and quantitative methods and the role of ethics in research, please see here. 

The SAFE Community Pulse Survey examines your community’s perceptions of the opioid and addiction crisis through a short survey.  It is not mean 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 tacking.  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.”  

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.  The SAFE Community Resources Exercise seeks to address this issue by helping coalition members understand the resources their fellow members bring to the table as well as educate the coalition about the depth and breadth of other services that are offered in the community.

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 and 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, to influence policy, and 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, your state, and even national levels.  Some national sources of data might include:  

 

Building Performance Measures

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 related to addressing the crises.  Data tracking the number and locations of overdoses, for example, can provide the community with the knowledge of where overdoses are taking place, what hot spots exist, and therefore where focus is needed.  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 setting, 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 to include 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 for the reader and providing a picture, 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 and ask for help and research best practices 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).

 

 

Building and Sharing Data

Data collection and building a sufficent data set can often be challenging.  Many agencies who represent important sources of data are often not accustomed to working with others and sharing the data they have.  Often there are questions of confidentiality.  It is important to first establish identified leaders 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 experiece needed 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 determne what data each has, if they are willing and able to share it, and what restriction 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.  Keep in mind this is a learnng experience for all.  People are learning about how experience and knowledge are part of the larger picture.  True collaboration results from the process of determining what data is needed in order to answer critical questions required for the development of an effective strategy.

Data Sharing Agreements

Even in situations where agencies wish to share data, often some type of data sharing agreement is required.  Parties will want to know that confidential or other sensitive data will not be disclosed publically or beyond a limited number of participants.  While the creating of such documents is often done by counsel, there are many boiler-plate examples that can be used and altered to meet the requirements of most agenices and other commmunity partners. (ADD FOOTNOTE OF ! or 2 EXAMPLES)

 

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 related to addressing the crises.  Data tracking the number and locations of overdoses, for example, can provide the community with the knowledge of where overdoses are taking place, what hot spots exist, and therefore where focus is needed.  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 setting, 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.

 

Public Reporting Examples

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 report made available by local government or a local task force/opioid response team where they exist.

Here are some links to different dashboards and data mapping  efforts:

New Hampshire Drug Monitoring Initiative

Allegheny County Data Warehouse

 

 

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 and 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 adjustment.

 

Tracking Progress through Data Collection

Fighting this epidemic is a process, not an event.  Of equal importance to using data to develop effective stratgies and programs, data is needed to determine how effective the strategies are when implemented.  This tracking also holds the stakeholders involved accountable to doing their part.  If progress is not being made, or is minimal, additional changes on what approaches should be taken need to be developed.  This process may often reveal that additional data is needed.

The process of collection, analyzing, and monitoring data is an ongoing one.  It is therefore important that those charged with that effort meet regulary to discuss trends, sucesses, and areas where more or different types of stratgies are needed.  These can then be shared with the larger stakeholder group who can develop new approaches or alter existing ones.

 

 

 

 

Additional Resources

Harvard Institute for Excellence in Government  (Case studies on data driven approaches)

https://scholar.harvard.edu/files/janewiseman/files/data_driven_approaches_to_fighting_the_opioid_crisis_jane_wiseman_april_2019.pdf

 

RxStat (New York, NY)^[3]

• Partners: the New York City Department of Health and Mental Hygiene with their public safety partners.
• Approach: RxStat consists of two general phases: collecting timely and accurate data and using the data to develop targeted interventions aimed at reducing overdose deaths.
• Outcomes: Staten Island has seen a 29 percent decrease in prescription opioid deaths since officials first began implementing RxStat.

 

Project Vision (Rutland, VT)^[4]

• Partners: Rutland Police Department (led by Chief Brian Kilcullen), elected officials, representatives from the medical field, social service providers, local businesses, criminal justice agencies, schools, nonprofit organizations, mental health providers, faith-based groups, federal and state law enforcement agencies, and other stakeholders.
• How it works: RuStat meetings every other week. During the meetings, representatives from the police department present specific addresses within the community that have been the subject of three or more police visits during the previous two-week period. Project VISION members can then determine whether they are familiar with the addresses through their own work—for example, a social worker who is at the meeting may have a client at the address. From there, Project VISION partners can devise a plan to provide the person identified with the appropriate services. According to Scott Tucker, Executive Director of Project VISION, many of the crimes associated with drug use have decreased since the program started.
• Outcomes: From 2014-2016, burglaries decreased by 60 percent, shoplifting decreased by 36 percent, and larcenies went down by 40 percent.
• Website: [1]
• Contact: [2]

 

Local Overdose Fatality Review program (Maryland)

• Partners: Maryland Department of Health and Mental Hygeine (DHMH), overdose fatality review teams in each county in the state.
• How it works: For each overdose incident, the DHMH provides the local review team with information from the state medical examiner’s office including raw information about the death and any substances found during the medical examination and other information it can gather such as the deceased’s drug treatment records. Team members must sign a confidentiality agreement to obtain access to protected health information. The local review teams examine these data and all other information they receive about each case. Based on this review, the team develops a set of findings about what potentially could have been done to prevent the death including any missed opportunities for prevention, gaps in the system, and areas for increased collaboration among agencies and stakeholders at the local level. The team also develops recommendations for how these deficiencies could be addressed through changes in laws, policies, and protocols.The review team’s findings and recommendations are shared with officials at the state level, who use the information to inform policies and programs aimed at preventing future overdose deaths.^[5]
• Outcomes:
  • Quality of referral systems improved
  • Increased focus on outreach to families to provide overdose prevention & treatment services by local health departments and other providers
  • Identification of new target audiences for Overdose Response Program (naloxone) trainings
  • Increased awareness of member agency staff of overdose related issues and Overdose Response Program training for member agency staff
  • Changes to intake questionnaires to include questions about overdose history
• Website: [3]
• Contact: Erin Haas (Program Manager) [[4]]

 

 

Deloitte Center for Health Solutions (DCHS)

The Deloitte Center for Health Solutions, part of Deloitte LPP's Life Sciences and Health Care practice, is a source for fresh perspectives in health care. It looks deeper at the biggest industry issues and provides new thinking around complex challenges. Cutting-edge research and thought-provoking analysis give their clients the insights they need to see things differently, and address the changing landscape.^[7] DCHS developed a report called, "Strategies for stemming the opioid crisis" that describes how data analytics can help health plans and pharmacy benefit managers chart their course. To learn more about the DCHS and their research, visit [5].

  According to their major findings, potential strategies for health plans and pharmacy benefit managers (PBMs) include:^[8]

• Leveraging data and emerging technologies
• Working toward more streamlined data collection and sharing
• Supporting the development of evidence-based standards and quality metrics to define and encourage successful treatment
• Advocating for policy changes at the federal level

This complex, multifaceted problem calls for systematic solutions across the healthcare system.^[9] Read more about strategies for stemming the opioid crisis.

 

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