Here we go again.
Alden Bourne reports that Matt Warshauer, a history professor at Central Connecticut State University, has encountered privacy obstacles to researching Post-Traumatic Stress Disorder or associated conditions like Soldier’s Heart in past wars.
Warshauer discovered Perkins in a patient casebook he was able to look at back in 2011. Soon after, the state passed a law making all such records off-limits to researchers.
There are many more books — now under lock and key — that Warshauer is eager to see. They’re about the size of a photo album and their covers, made of burlap and leather, have started to fall apart. Each contains the records of 325 or so patients and perhaps, of some Civil War veterans who walked across the lawns of the Connecticut Hospital for the Insane in the late 1800?s.
“They mean the motherlode,” Warshauer says. “Those are the books that we need.”
This past February, Warshauer thought he might soon have access to what he needed. Connecticut legislators drafted a bill, allowing the release of medical records 50 years after a patient’s death. But then, with backing from mental health advocates as well as the state Department of Mental Health and Addiction Services, lawmakers inserted an amendment: all names would be redacted, or blacked out, making patient files of little use to historians.
“We feel like we have an obligation to protect the names of individuals who have mental health and substance abuse disorders,” says Pat Rehmer, commissioner of the agency. ”With the amount of discrimination that people experience, there are families that are not going to want to have the fact that their loved one was here at Connecticut Valley Hospital public and I think we have to respect that.”
On that argument, Warshauer accuses Rehmer of talking out of both sides of her mouth, since her agency is currently involved in a campaign to destigmatize mental illness.
“How is saying that, ‘Oh, descendants today will be traumatized by the fact that their great, great, great, great grandfather was impacted by a horrific war, the most horrific war in this country’s history…’ Wouldn’t you be traumatized by that experience?”
Commissioner Rehmer counters that she would not be embarrassed by an ancestor who’d suffered mentally because of his war service. But she points out that not all the medical records relate to combat trauma.
“Some of the diagnoses are genetically linked,” Rehmer says. “So, if you’re great, great, grandfather is diagnosed as bipolar and that becomes public, will there be people who are looking and saying, ‘Oh, you know, the genetics is there, so do we need to think differently about you and your family?’”
Warshauer’s research is now at a standstill. He says one reason he’s not giving up is that he wants to help returning vets from Iraq and Afghanistan with PTSD understand they’re part of a long line of soldiers who have suffered.
“They’re the ones who told me you have no idea how important this work is, how important it is for us to be able to tell this story,” he adds.
He’s hoping the Connecticut legislature comes up with a solution this year or next that would give him access to the additional records. But there’s a chance he won’t have to wait. During our interview, Commissioner Rehmer said she’s willing to meet with the professor to see if there’s a way to get him what he needs, while protecting the privacy rights of long-ago patients and their families.