Building a Patient-Centered Research Collaborative for Psychosocial Oncology WE L COME PCRC Me mb e rs
Who’s on the Call • 15 AOSW me mb e rs • Bra d Ze b ra c k • L isa K e lle y • 15 Pa tie nt Advo c a te s • K una l Numb a lla • PCRC E xe c utive Pla nning Co mmitte e me mb e rs • AOSW Bo a rd me mb e rs
Overview of Call • Why a re we do ing this? • What is a Pa tie nt- Ce nte re d Re se a rc h Colla bora tive ? • Ho w will it wo rk? • Que stio ns? • Logistics & Homework
Why : Our health care system is broken • Pe o ple a re suffe ring • So me a re suffe ring unne c e ssa rily • Qua lity o f c a re is c o mpro mise d – NE D a nd E MAND e xc e e d the c a pa c ity OF DE T HE M to se rve SYST E
WHERE’S THE EVIDENCE?
Determinants of Excellence Institute of Medicine. Crossing the Quality Chasm, 2001 . Safety effective Patient - timely centered efficient equitable 6
Leading Causes of Death in the US US Centers for Disease Control and Prevention, 2015 1. He a rt Dise a se (614,000 de a ths) 2. Ca nc e r (592,000) 3. ADVE RSE ME DICAL E VE NT S (250,000-400,000) 4. Chro nic Re spira to ry Dise a se (147,000) 5. Ac c ide nts (136,000)
Any good news? YE S!
30+ Years of Oncology Social Work Research Advanc e d unde rstanding o f the psyc ho so c ial ne e ds o f c anc e r patie nts and familie s • Distre ss, de pre ssio n • F ina nc ia l impa c t • Sympto m b urde n • Qua lity o f life
30+ Years of Oncology Social Work Research De mo nstrate d value o f psyc ho so c ial inte rve ntio ns • Co g nitive Be ha vio ra l T he ra py • De c isio n-ma king , Pro b le m-so lving • Psyc ho the ra py, Psyc ho -e duc a tio n • Gro up suppo rt inte rve ntio ns • Mindfulne ss Psyc ho so c ial inte rve ntio ns e nhanc e q uality AND q uantity o f life
To Assure Quality Cancer Care in the 21 st Century Impr ove d patie nt & family e xpe r ie nc e Impr ove d Population He alth He alth c ar e c ost c ontr ol
Practice Oppor ortu tuni nity ty Policy Research SECTORS THAT INFLUENCE ACCESS TO, AND QUALITY , OF CARE
What is a Patient-Centered Research Collaborative (PCRC)?
PCRC for Psychosocial Oncology Patient Advocates Clinical Practice Quality Cancer Care Oncology Social Workers Patient Outcomes & Policy, Experience Advocacy Population Health Academic Cost Control Researchers Research Key Stakeholders
A Patie nt-Ce nte re d Re se arc h Co o pe rative Gro up (PCRCG) fo r Psyc ho so c ial Onc o lo g y? HOW WILL IT WORK?
Project Aims • AI M 1. E sta b lish a re se a rc h c o o pe ra tive g ro up c o mprise d o f o nc o lo g y so c ia l wo rke rs, pa tie nt a dvo c a te s, a nd a c a de mic re se a rc he rs. • AI M 2. E nha nc e the c a pa c ity o f the re se a rc h g ro up to c o nduc t hig h-q ua lity Pa tie nt-Ce nte re d Re se a rc h • AI M 3. E ng a g e the g ro up in g e ne ra tio n, prio ritiza tio n, a nd c o nduc t o f Pa tie nt-Ce nte re d Re se a rc h. • AI M 4. Disse mina te a nd c o mmunic a te re se a rc h finding s to info rm pra c tic e a nd po lic y
AIM 1. Establish a research cooperative group comprised of oncology social workers, patient advocates, and academic researchers. • Do ne !
Aim 2. Enhance the capacity of the research group to conduct high-quality Patient-Centered Research • Re se a rc h I nstitute s (2017 & 2018) • Cre a tio n o f re se a rc h tra ining a nd skills-b uilding mo dule s • Mo nthly te le c o nfe re nc e c a lls (July, 2017 - ? )
AIM 3. Engage the group in generation, prioritization, and conduct of Patient-Centered Research • E sta b lish c o re princ iple s a nd pro c e dure s • Cre a te c o mmitte e struc ture s a nd wo rk g ro ups
AIM 4. Disseminate and communicate research findings to inform practice and policy, change systems, improve cancer care • F e e db a c k study re sults to o ur o wn c a nc e r pro g ra ms • E .g ., Ca nc e r Co mmitte e s • I nte ra c t with AOSW me mb e rship • I de ntify o ur stre ng ths; ha rne ss o ur re so urc e s a nd po we r
Summary 1. Increase research comfort and skills for OSWs and patient advocates 2. Increase and support meaningful participation of OSWs and patient advocates in clinical research at their cancer programs 3. Increase recognition of OSWs and patient advocates as critical contributors to evidence-informed policies and practices that improve quality of cancer care 4. Form collaborative investigative teams to conduct research of relevance to patients and families 5. Identify and obtain resources to sustain our efforts
What What How Why QUESTIONS?
Logistics • Orie nta tio n ma nua l • Re se a rc h I nstitute • Wha t to e xpe c t • Afte r the Re se a rc h I nstitute • T ra ve l I ssue s: • Co nta c t L isa K e lle y, a o sw-pc rc @ umic h.e du
Homework: Have a think… • Wha t do yo u wa nt o r ne e d to kno w to e nha nc e the q ua lity o f c a nc e r c a re a nd ACCE SS to tha t c a re ? • Wha t do yo u think he a lth c a re pro vide rs ne e d to kno w to e nha nc e a c c e ss to a nd q ua lity o f c a nc e r c a re ? • Wha t a re to pic s a nd issue s tha t a rise fre q ue ntly in the c a re o f c a nc e r pa tie nts, a nd fo r whic h g e nuine c linic a l unc e rta inty e xists?
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