Integra(ng the Evidence into an Evolving System of Care: Oregons - PowerPoint PPT Presentation

Integra(ng the Evidence into an Evolving System of Care: Oregon’s Experience Tamara Sale, Director, EASA Center for Excellence

Unprecedented opportunity • We have the poten=al to achieve a series of major break-throughs in care throughout the west coast (and across the country and world). • Well-aligned efforts building on lived experience and community perspec=ves, and carefully considered research will get us there faster. • Oregon, California and New York are well-posi=oned to be catalysts.

Integra=ng the Evidence into an Evolving System of Care • Quick introduc=on to how Oregon has evolved • How Oregon has used a shared context and framework to move forward more rapidly toward a new standard of care • Reflec=ons on integra=on of research into community implementa=on: cau=ons and opportuni=es • Opportuni=es for share for ac=on

Integra=ng the Evidence into an Evolving System of Care • Oregon is not California but we both care about young people and families! • How Oregon created a shared context and framework a new standard of care • How EASA is informed by research and how a community-based perspec=ve changes the way we think about research • Where we are going from here: common opportuni=es and challenges

A Quick comparison • 4 million people • 38.8 million people • 237 people/square mile • 40 people/square mile • 23.3% under 18 • 22.6% under 18 • 38.8% Hispanic/La=no • 12.7% Hispanic/La=no • 14.7% Asian • 4.4% Asian • 6.5% Black/African American • 2.1 Black/African American • 38% “White alone”/not Hispanic • 9.9% born in foreign country • 27% born in foreign country • Suicide rate 15.9/100,000 • Suicide rate 9.4/100,000

Something we Share (the proposed state of Jefferson) Source of image: Wikipedia

Other things we share • The wine industry • Our property tax limit measure • Legalized marijuana • “West coast poli=cs”

EASA Timeline • 1997 Oregon Health Plan • 1999 Researcher hired (Australia) • 2001 5-county program • 2006 Itera=ve development • 2007 Entered research: EDIPPP • 2007 Statewide dissemina=on • 2010 RAISE Early Treatment Program (Lane County) • 2013 EASA Center for Excellence • 2014 PEPPNET; Congressional ac=on

Early Assessment and Support Alliance (EASA) 2008 2001 2010-14 2014-16 2016 2016-17 2014

How Oregon has Conceptualized Early Psychosis Services Goal: Early universal access and most effec=ve and empowering care Early psychosis programs as agents of change Alignment of leadership, funding Developmental framework (system, clinician, individual) Facilita=on of rapid adop=on of effec=ve prac=ces Individuals and families as owners

Leveraging change in Oregon • Common name, branding, eligibility (with flex), structure • Common prac=ces and learning process • Guidelines & fidelity • Ongoing training & forums • Data system • Website www.easacommunity.org • Forums for problem solving & program development • Shared decision making

EASA • Guided by lived experience and core philosophy • Goal is long-term system change • Integra=on of research and evidence-based prac=ce • DUP research • SAMHSA “Toolkit”: • Individualized Placement and Support • ACT • Dual diagnosis • IMR (rela=onship to IRT) • Low-dose prescribing; shared decision making • CBT • MI • Feedback-informed treatment • Occupa=onal therapy • Peer support • Nursing • Family psychoeduca=on (group and individual)

Research : Goal refinement (qualita=ve, DUP, etc.); rela=ve efficacy (RCT); emerging research, consensus (Delphi) Lived Experience : CBPR Philosophy; goal refinement; Organiza>onal: feedback; language; Developmental goals; direc=on process evalua=on; quality improvement

Research transla=on: what we look for changes how we see the evidence • Symptom remission • Dura=on of “untreated” psychosis • “Preven=ng” schizophrenia • “Func=oning” • Developmental progression, locus of control and iden=ty • Par=cipatory decision making and empowerment • Social determinants: • Social network • Income level and income security: safety net, educa=on, voca=on • Access to basic needs: housing, transporta=on, nutri=on, safety • Belonging and social par=cipa=on

Integra=ng the Evidence • “Coordinated specialty care” is hybrid of mul=ple prac=ces & fields • Significant problems need work: metabolic disorder, developmental progression, sustainability • Need to build our own evidence and consensus

On the verge of mul=ple breakthroughs • Earlier and more accurate engagement • Understanding cogni=ve and sensory underlays • Bener understanding of the phenomenology of psychosis (biological, experien=al) • Systema=c workforce development • Mul=ple emerging treatment methods • System of care approaches focused on developmental progression and mul=ple life domains • Voca=onal and career support approaches

Evidence-based prac=ces: challenges • RCT standard open means older data and prac=ces • Requires mul=ple RCTs with large enough numbers • Researchers usually define ques=ons • Evidence base developed with older popula=ons in long-term services • Mul=ple fidelity requirements (IPS, ACT, CSC, etc.) • Key disciplines and prac=ces missing (engagement, peer support, nursing)

Limita=ons of research findings • Controlled condi=ons • Eligibility restric=ons • Timing driven by funding • Years to come to publica=on • Nega=ve results open go unpublished; data is some=mes presented in its most “favorable” light • Sta=s=cal significance does not always translate to individual • Lack of bridge between experiment and implementa=on

The line between research/ evalua=on and advocacy • Poten=al for over-interpreta=on and over-statement • Community members are easily misled by downward graphs • Lack of guidance on adapta=on (age, cultural, varia=on in presenta=on) • “Proving the case” versus con=nual learning • Proving the case is easy when things are as bad as they have been!! • Can’t be complacent with what we’ve learned so far

Implementa=on dangers in early psychosis • Popula=on vs. clinic-based framework • Who is lep out? Who is not engaged? • Unintended consequences of cliffs”: • Prodrome vs. FEP, • Two-year vs. long-term support

The power of numbers: EPINET • Rapid learning process • Defining common data set and prac=ces • PhenX measures first step

Crea=ng the field! • Lots of California examples (university-local connec=ons) • Social media strategies, reducing metabolic disorder (Orygen, UC Davis, New South Wales) • Clinical high risk na=onal mee=ng • Data sharing: NAPLS and EDIPPP (Risk Calculator) • Beginnings of Community-Based Par=cipatory Research: EASA Connec=ons example (Lived experience and our movement toward community-based par=cipatory research)* • * funded by Na=onal Ins=tute on Disability, Independent Living, and Rehabilita=on Research (NIDILRR), through Portland State University's Pathways program

EASA Connec=ons Logic Model

How We Might Learn from Each Other • Ar=culate common goals across programs • Work on clear measurements to facilitate comparability • Challenge our field’s assump=ons (i.e. is short DUP always good?) • Par=cipate in research and peer review • Work toward Community-Based Par=cipatory Research approaches and prac=ce-based evidence • Recognize and facilitate sharing of diverse exper=se

“Crowd-sourcing” research (Large-scale peer review??) • What does research teach us; what other data is available? • How can this help us? • What conclusions should we NOT draw? • Are we asking the right ques=ons?

Integra=ng the Evidence into an Evolving System of Care • Oregon is not California but we both care about young people and families! • Crea=ng a shared context and framework can help us move more rapidly toward a new standard of care • We need to integrate research but learn from lived experience and how a community-based perspec=ve • We will all play a role in an exci=ng =me of important break-throughs.

PEPPNET…

To contact us… • Tamara Sale, MA, tsale@pdx.edu