This post refers to a paper published this month in Journal of Health Care for the Poor and Underserved: "Stigma and Difficulty Accessing Medical Care in a Sample of Adults with Serious Mental Illness"
In the Spring of 2012, I was talking to a colleague who had worked in the public mental health system for several decades. The Affordable Care Act was gaining traction in behavioral health, particularly in regard to integration of mental health, substance use, and physical health services--which has now become an enormously popular topic in public mental health, and the subject of Dr. Ron Manderscheid's award talk at this year's American Public Health Association annual conference.
My colleague was quite excited about the possibility of increased access to physical healthcare for people diagnosed with mental disorders. In the past, people diagnosed with mental disorders have almost exclusively been the purview of the mental health system. I always laugh [out loud] when Dr. Manderscheid says "It turns out, mental health clients die from the same causes as other people." The obvious irony of this statement is: We are all human.
As I was trying to be supportive of my colleague's newly found enthusiasm for access to physical healthcare, I couldn't help but feel a lot of resentment. I told her this story:
Over winter break, I fainted and fell over all of sudden. When the paramedics came, they asked if I was taking any medication. I told them I was on Klonopin for anxiety and sleep and Lamictal for depression. They took me to the ambulance to go to the emergency room to be checked for heart problems . While in the ambulance, the two paramedics began asking me if I had ever been diagnosed with bipolar disorder. I said “many years ago.” They then asked if I was “also schizophrenic.” I said “No.” After some more conversation, while waiting in the ambulance strapped to a gurney and very worried for my health, they asked again if I was “also schizophrenic” and whether I had ever been on “a hold.”
Being a person with experience of court ordered medication and involuntary hospitalizations, I became very frightened. I was afraid that their line of questioning based on my current psychotropic medication status—despite calling 911 for fainting—would lead me to be scrutinized for psychiatric problems and potentially involuntarily hospitalized and put back on the medications I had struggled and succeeded to get off of (under the supervision of a psychiatrist). Even if I was going to die in my sleep because of a medical problem, I wished that I had not called 911 and gotten in that ambulance alone. When I got to the emergency room, I did not share any of my psychiatric history with the doctor because I was afraid.
Suddenly, my colleague--previously so enthused about integration--was taken aback by the perceived dangers for people like me of even trying to get emergency medical care. She told me I needed to share this kind of story. I called Dr. Manderscheid and said that stigma and discrimination needed to be addressed in the conversations going on about integration of mental health clients into primary care.
I was reminded of an analyses I had recently completed in a course in my doctoral program. This is where I want to make a pitch for "consumer-research" (or "survivor-research" or "patient-led-research"). I am not arguing that other people do not possess these attributes, only that I believe them to be central advantages of consumer-research endeavors:
- Special access: This refers to trust within the community you are studying or working with, which often grants access to venues where “outsiders” may not be allowed (categorically or implicitly).
- Special knowledge: This refers to knowledge of the behavioral health & social service systems from one’s own experience, and an almost intuitive understanding of others’ struggles that aid in hypothesis development and interpretation of results.
- Passion and perseverance: To give up on one's work is to give up on oneself and community. If that were going to happen, it would have already.
I had never actually tried to publish this paper since it fulfilled the class requirements and was not a priority for me. For those who don't know, academic publishing is a long and windy road, often filled with rejection and endless toil. The public generally refers to this as "publish or perish", although I've never heard anyone in academia use that term in any serious way. We know the real peril is "funded or flop", given the increasing focus of universities on their "business case." However, if you don't publish, you don't get funded, and that's where publications matter.
Is that why publications matter?
They matter because a jury of your peers decided your reasoning and science were worthy of entering the discourse. Because I do believe that publications have a real value beyond my own survival, I did not want this paper published in an echo-chamber of mental health journals, where we are all painfully aware on some level that mental health clients have it bad in the healthcare system and society. If the argument is equitable access to physical healthcare, then these arguments need to be presented to the folks who research and/or provide physical health services.
Substance use services and research have been called the "stepchild" of mental health, and mental health the "stepchild" of physical health. The paper authored by myself, Dr. Manderscheid and Dr. Mojtabai was rejected several times from several general health journals. Many concerns were about self-report of access to care by the participants. The reason this is an important point to make in publishing mental health studies in general health journals is because in mental health we are accustomed to self-report by participants and understand the validity of these data, given the absence of objective measures of almost everything mental health researchers are concerned with. We don't have lab tests for our issues of interest. This can make it difficult to communicate importance and validity to the broader scientific community.
In a sense, the scientific community is as fragmented as the services we study. The piece of this that is not fragmented is that people are people. We have a range of experiences and knowledge, and then we all die of the same causes.
While this wasn't one of my favorite papers I've ever written, I am extremely grateful for my training in perseverance--both from the "school of hard knocks" that lead me to this kind of research, and my actual academic training where failure is not an option.
But perhaps my favorite thing about the paper is that it is important to my community that we have equal access to healthcare services without discrimination--given that we die of the same things all other humans do. It is especially important to me that consumer-researchers take the agenda of equality and human rights farther than first-person accounts, to the level of evidence required of any worthy science.