When I attend a wide variety of Behavioral Health meetings in San Diego County focused on mental health, substance abuse, homelessness, especially when related to criminal justice issues, I hear a common theme as we consider improving the type and levels of service to help affected clients.
That theme is the lack of access to organized data. Either we’re told that we can’t do this or that without better data and, that even if we had local data, since we don’t share data with other California counties, we need to start at square one with clients seeking help. This is particularly acute issue for clients experiencing severe mental illness or chronic addiction.
What we know is:
- We need a common naming standard for behavioral health, drug and alcohol, and criminal justice systems data.
- Counties need to use that standard so that we can normalize data statewide.
- We need to systematically share both client data as well as de-identified data on a timely basis.
This is a monumental ask granted. However, until we do this we will remain unable to effectively serve a significant number of clients. How many I cannot tell you (we don’t have the data I’m told.) When we do serve these clients without this valuable information, there are unnecessarily high financial and social costs.
Is California is on the trajectory of standardizing and normalizing data, or will we continue developing services to our residents using existing systems, remaining locked into the status quo?
For the purposes of illustrating these points in this post there are two general categories of data:
- DE-IDENTIFIED DATA | or data not connected to an individual. This data could be used by anyone wanting to learn more about access, interventions, continuum of care pathways, or trends. Researchers, academia, county Behavioral Health System staff, employees at existing providers, media, or the general public.
Access to this data allows one to identify issues, challenges, and opportunities.
- IDENTIFIED DATA | or data connected directly to clients would be used systemwide by permitted users who can see the entire body of knowledge we have on an individual.
Access to this data allows county behavioral health systems and providers to serve clients optimally, ultimately at markedly lower financial and social costs.
Naturally there are real and valid concerns about protecting client data. Not just protecting our individual health data from the general public but, protecting it from users within the government system. The fact is, different entities in government have different, at times conflicting, rationale and motivations to access client data.
Imagine the client onboarding costs to a county when facing a client without any access to their legacy health data.
Every time a new county resident appears, the current behavioral health system effectively starts over. When clients return to a county that once served them, all the health history data they generated in other counties sits unusable in the other county’s records systems, usually always inaccessible.
This transience issue also hurts the ability for us to learn what’s working and what isn’t. When researchers attempt to do longitudinal research on various cohorts, they lose tremendous value when clients decide to leave the county.
We then lose the ability to more effectively do things like identifying gaps in coverage, learning trends in continuum of care, and deploying best practices.
There are high social costs as well. They include the most important – the client is being poorly served and oftentimes is not experiencing the best quality of life. The impacts on their family, loved ones, colleagues, as well as the individuals within our systems that are working to serve them can be unnecessarily frustrating.
There is one cohort that doesn’t profit nearly as much if counties were to begin collecting, sharing and using data more fluidly. The Consultants.
California’s fifty-eight counties are a lucrative pool of individual opportunities to sell consulting and technology services. The more disparate, disconnected, and scattered the systems and resulting data output the better.
There are far too many benefits to unifying our data standards and ease of appropriate access. If we aren’t on this track why not? If we are, what is the plan, and how do we participate?