March 8, 2018
Building a truly community-based early detection and intervention program
By Peter Bachman – HOPE TEAM, Pittsburgh, USA.
In October 2014, I started as an assistant professor in the University of Pittsburgh’s Department of Psychiatry, to study and treat emerging psychosis in young people. I told my new colleagues, “I’m here to bring indicated prevention of psychosis to southwestern Pennsylvania.”
For me, this was an uncharacteristically bold statement. It probably reflected my lofty aspirations (or caffeine-induced grandiosity) more than anything else, because I certainly didn’t have a concrete plan for making psychosis prevention a reality here. Nevertheless, my lack of blueprint opened an opportunity for something auspicious to happen: a plan developed organically, following the contours of risk distributed throughout the community to create a program that is unlike any other in the U.S..
Prior to moving to Pittsburgh, I had been the Associate Director (I gave myself that title, but no one objected) of a groundbreaking prodromal psychosis research clinic at UCLA. I wanted to build something distinct in Pittsburgh, though.
Around this time, the North American Prodrome Longitudinal Study (NAPLS) individualized risk calculator started gaining attention. I spoke with my colleagues quite a bit about the calculator. Sometime during one of these discussions, inspiration struck.
The risk calculator was a big advance – no question. Obviously, psychiatrists never really face the task of deciding which of two large, demographically matched groups are full of people who will eventually develop psychosis. Until the calculator came along, though, that was the premise clinical research was operating on – at least implicitly. But the calculator provided a unique risk estimate for each individual, giving clinicians essential data for planning treatment for the people they saw in their offices every day.
One of the calculator’s details struck me as odd, though: neither history of trauma, nor recent adversity predicted an increased risk of psychosis – at least not to a statistically significant degree. Surprising, right? (Give it a try, yourself here. Trauma and other adversity doesn’t really change the calculator’s risk estimates.) The developers of the risk calculator acknowledged that the null findings for trauma and recent adversity were unanticipated. They suggested that trauma and adversity may be linked to high-risk status, but do not transition to a psychotic disorder, per se. Definitely a reasonable possibility.
I struggled to square this risk calculator non-prediction with what felt like a flood of findings, coming mostly from Europe that showed a robust link between early adversity and later psychosis, or at least psychotic-like experiences. Why this apparent discrepancy between NAPLS and the European studies?
I began wondering whether the link was real, but that detecting it required a sample of people with a high level of adversity. And if so, would the association still exist for many types of adversity – early life trauma, exposure to violence, poverty, social marginalization? I mean, research has shown that in the U.S., being African-American doubles a person’s risk of having a schizophrenia diagnosis. Doubles it! Sounds like a strong association to me.
I became determined to establish the HOPE TEAM (Helping Overcome Prodromal Experiences Through Early Assessment & Management … because all of the short acronyms were already taken) in Pittsburgh communities where adversity and marginalization existed in abundance.
As it turns out, my future colleagues in the Allegheny County Department of Human Services had just developed a series of reports mapping the level of deprivation and need in communities across the county. They made a detailed map of the county that indexed deprivation – and consequently, adversity – neighborhood-by-neighborhood. When I stumbled across the map online, I realized, this is the map that will guide our psychosis prevention work. To the best of my knowledge, no early detection and intervention program takes this data-driven approach to identifying psychosis risk “hot spots.”
The Pittsburgh Foundation, to my profound gratitude, supported the idea. They understood that HOPE TEAM had the potential to address one of their high-priority interests: the pernicious intersection of poverty, discrimination, and serious mental illness.
The next hurdle was figuring out how to establish a presence in the neighborhoods the map highlighted. Our lucky break came when we joined forces with an existing social service agency – another aspect of HOPE TEAM I believe is unique within the U.S.. Family Care Connection (FCC) is a decades-old, community-based agency focusing on early childhood development. Through their work doing home visitations to check in on newborns, to parent-child interaction training, to early literacy programs and healthy cooking classes, the FCC staff know everyone in neighborhoods around the county’s six FCC centers. And they know those people’s parents, and their grandparents. They know which kids in the neighborhood lost a parent or a cousin (or three or four) to gun violence or overdose. They know whose parents are in prison.
Most importantly, FCC had earned people’s trust – not an easy task when people have had their jobs vanish, heard years of empty promises from politicians, and witnessed gangs divide up the community, block-by-block. When you have that trust, adults start asking for advice and help when their 12-year-old daughter whispers to voices she thought no one else would hear, or when their 17-year-old son stops caring about his grades and stops hanging out with his friends. The local pediatrics practices start making referrals, too. And school counselors. And word spreads from there.
Many challenges lie ahead – everything from how to make HOPE TEAM a financially sustainable service to expanding our capacity to provide empirically-supported interventions far from the university’s campus. But I couldn’t be prouder of HOPE TEAM’s beginnings. We started with a map of the neighborhoods with the greatest needs and most intense risk, and we built through support from a local foundation and through partnerships with local social service agencies.
In academia, we often use the phrase, “in the community”, to mean essentially, not the university. But that’s a negative definition. HOPE TEAM’s origin, and its present and future are truly in “the community,” defined positively. Community defined by the sum of what matters to the people who live in Braddock, McKeesport, North Versailles, Homewood, Mt. Oliver, the Hill District, Wilkinsburg, Aliquippa, and other neighborhoods and boroughs in Allegheny County where being a teenager, or a young adult, or a parent, is tougher – and riskier – than it might otherwise be.
You can also follow Peter Bachman on Twitter @NeRDlabPete