Mental health and data sharing. Seeing those phrases in a single sentence gives even the most seasoned professionals pause. This is legitimately sensitive data. And there are often specialized confidentiality and privacy laws due to the stigma and discrimination against those with mental health disorders.
All the same, many agencies are starting to ask what the consequences are of not sharing this type of information. In the United States, the federal government has enacted rules against information blocking to encourage appropriate clinical data sharing between providers. However, the need for data sharing for analytics has not been addressed sufficiently. In my mind, analytics in this context includes research, evaluation and quality improvement.
Could it be that public leaders are obliged to link data from various systems so they’ll have a more holistic view of the individuals they’re treating? And could this result in better services, better outcomes and new approaches?
Forward-thinking leaders believe that, in addition to protecting data, state mental health agencies also have a public and a moral duty to link systems and data. Only then can they better understand how to help the people they serve.
What are public and moral duties?
Public duty includes fiscal responsibility and transparency. Demonstrating that tax dollars are being used effectively and efficiently is critical both for accountability and for ongoing quality improvement efforts. Increasingly, efforts tied to mental health services cross public agencies – including managed care, physical health, homelessness, criminal justice, education, child welfare and employment. Understanding how publicly funded mental health programs impact other public programs provides a more complete view of fiscal responsibility.
Further, strong scientific assessments of programs require more whole person data. We not only want to know whether dollars are going to the right programs and people, but whether they are having the desired positive community and population impact.
Can we really tell that story well without integrated data?
Moral duty implies that mental health leaders are remiss if they ignore the opportunity to link rich data from their diverse systems to make better decisions and serve people better. In many ways, that is the point of government and public agencies: Improve our communities.
A clearer view of costs across programs would help protect desperately needed dollars for underfunded mental health programs. A clearer view of services would identify gaps in need, as well as positive impacts, which will lead to smarter advocacy and more targeted support for improving care.
In the midst of the COVID-19 pandemic, issues of health equity have come to the forefront. Mental health services are most definitely not immune to inequities. The best way to identify inequities and their solutions is by gaining a more whole person perspective. That seems to be a dominant moral and ethical imperative for our systems now.
Practical privacy considerations
When we see how our efforts intersect, we can enhance partnerships between agencies that are all working toward the same goal of improving our communities. It can also raise awareness of what policies and funding are, and are not, working as intended, giving us ongoing feedback loops for policy quality improvement.
While most of the federal efforts against information blocking (mentioned above) focus on individuals’ data being surfaced, the considerations discussed here are dependent upon aggregate results. While individual-level data enhances the insights behind the scenes, additional disclosure of individual-level information is unnecessary. That fact may help many people navigate the confidentiality and privacy rules.
Hear from the experts
Two agencies that are navigating this process are New York’s Office of Mental Health (OMH) and California’s Mental Health Services Oversight and Accountability Commission (MHSOAC). I had the privilege of talking with Dr. Marleen Radigan of OMH and Dr. Dawnté Early of the MHSOAC at last week’s SAS Global Forum. Both shared the benefits of whole person data empowering mental health services, including some tips on how to navigate data sharing when it’s needed.
I spoke with both experts in a panel conversation and interviewed Dr. Early in a mainstage presentation during the opening session. Both sessions are available free and on demand. I highly encourage you to hear insights from these exemplary women in analytics.
Do you have tips about how to enhance whole person analytics? What barriers do you need help to overcome?Register or log in to watch the joint session at SAS Global Forum