It’s interesting to see so much recent action there’s been on an issue where politicians and clinical leaders traditionally feared to tread. National Coordinator for HIT Karen DeSalvo, M.D., earlier this month outlined a push by ONC to bring more behavioral health providers into the fold, and work with the Substance Abuse and Mental Health Services Administration to get the data digitized and embedded into electronic records. The publicity on the issue follows efforts by federal lawmakers and associations like the American Academy of Nursing for more shared access to the most sensitive data in the healthcare ecosystem.
But, not surprisingly, the effort is going down a technologically and politically tortuous path. The plan being floated now would apply the Data Segmentation for Privacy (DS4P) technology standard to the effort, which would use metadata and encryption on a document and rely on the receiver having compatible technology to enable the data to be segregated. The federal workgroup on DS4P has said publicly it’s not sure if the standard is ready to go. On top of that, getting that data to flow requires automation in the behavioral health and psychiatric sectors of the industry, which are largely unautomated and are for the most part are going to have to be dragged into this kicking and screaming.
On the legal front, legislators have been jawing about the legal requirement, 42 CFR Part 2, which requires signed patient consent for each disclosure of data from federally-assisted substance abuse treatment programs. That’s just one example of many federal and state legal brouhahas over the status of mental health and substance abuse data. On top of that, many health systems are having intense debates about how to handle the data internally.
Why are we making this so hard on everyone? I sympathize with patients who recoil at the thought of a wider spectrum of caregivers knowing all about their mental health and substance abuse issues, and respect mental health providers who have been downright militant about safeguarding that information.
But the time has come to be a little bit insensitive. Adam Kaplin, M.D., chief psychiatric consultant at Johns Hopkins Hospital in Baltimore, made a point in an HDM feature a few years ago that stuck with me and helped shaped my thinking around this issue: he noted that depression is the biggest killer of heart attack patients during the year after their surgery. That statement is backed up by clinical research, including a study Johns Hopkins published in the International Journal of Medical Informatics that found sharing psychiatric information correlated with significantly lower patient readmission rates.
Kaplin also remarked that the only way most cardiologists know their patients are being treated for depression is if patients tell them. And now I can cue the findings of a 2014 study from Regenstrief, the Indiana University School of Medicine, and safety net provider Eskenazi Health that found half of patients who had control of access to their EHRs withheld sensitive information from all or some of their providers.
There’s still intense stigma around mental illness and substance abuse, certainly, but there’s also been growing recognition that caregivers can’t provide care with both hands tied behind their backs. The inexorable push to digitize and share health data is an acknowledgement of that fact.
Bluntly put, here’s how it works now: A patient voluntarily goes to see a caregiver, who is under intense, incentivized financial and clinical pressure to treat that patient as effectively as possible at the lowest cost possible. If clinicians aren’t aware of all the clinically significant variables they need to factor into their decisions, then all evidence-based protocols and efforts at care optimization go up in smoke.
Instead of making HIT and lawmakers and healthcare executives jump through hoops to incorporate mental and substance abuse data into front-line care, let’s just use a common sense approach and trust the discretion and humanity of caregivers. Many mind-numbingly complex technology efforts get dropped on this industry because, sadly, decision-makers have seemingly lost trust in clinicians. It’s time we give caregivers back a measure of respect and let them use sensitive information as they see fit instead of putting up a wall of digital partitions and regulations.
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