The Road Not Taken (often enough)

The Road Not Taken (often enough) William Baldyga, DrPH, MA Associate Director, Institute for Health Research and Policy Adjunct Assistant Professor, Health Policy and Administration, SPH

Institute for Health Research and Policy • Campus wide, transdisciplinary, led by Dr. Susan Curry • Facilitates a wide range of research through infrastructure supports including the MRC • Currently, faculty from 11 colleges and 43 departments collaborate on about $19 m in research yearly

Objectives • Overview of social and behavioral health research • Look at alternatives to traditional models • Talk about benefits, costs and effectiveness of CBPR

Traditional Scholarship • Scholarship is defined as the creation, discovery, advancement, or transformation of knowledge • The fruits of such efforts are evidenced only when that knowledge is assessed for quality by peer review and made public (Boyer, Carnegie Fdtn., 1990)

Community Engaged Scholarship • "Community-engaged scholarship is scholarship that involves the faculty member in a mutually beneficial partnership with the community" (Community Campus Partnerships for Health) • Incorporates co-education and capacity building; links knowledge with action (Wallerstein and Duran, 2006)

Traditional Research Paradigm • Responsive to funding priorities • Investigator initiated • Theory driven • Hypothesis testing • Tightly controlled methods (RCT, case control or quasi experimental design) • Dissemination to a professional audience

Resultant • Has created a massive and rich body of knowledge • Builds effectively on previous studies and incrementally develops theory to explain relationships • Results in evidence for action

Resultant • Interventions that are: • costly, highly intensive, difficult and require high levels of staff expertise • are not designed considering user needs or to be self sustaining • are highly specific to a population or setting • not packaged or easily customized • have strong internal and weak external validity Glasgow, RE, Emmons, KM. 2007.

Focus on Disparities • Population based approach to improving health status • Ecological approach to addressing health • Interdisciplinary/team based strategy • Use of evidence • Translational research

Reducing Disparities • In 2006, the U.S. invested $116 billion in health research (Research America) • NIH budget - $29 b (2006) • Pharma research - $52 b (2005) • U.S. - leads world in health expenditures- $ 6.1k/person • Norway - $4k; mean about $3k for post industrial economies

Measures of Success • Measures of quality for which members of selected groups experienced better, same, or poorer quality of care • Blacks, AIs and Alaska Natives received poorer quality care than Whites for about 40%) of core report measures - Hispanics received poorer quality of care than non-Hispanic Whites for over half of core report measures • Poor people received lower quality of care than high income people for 85% core report measures 2005 National Health Care Disparities Report, AHRQ

Measures of Success • Nationally, disparities are worsening for Hispanics and the poor and improving only slightly for AAs and Asians (AHRQ, 2005) • If current “improvements” continue, disparities in all cause mortality will disappear in 127 yrs (est.) • Locally, the picture is worse

Measures of Success • Between 1980-and 1998 Black–White disparities increased in Chicago on 19 of 22 measures (Silva A, Whitman S, Margellos H, Ansell D, 2001). • Narrowing of the Black:White rate ratios between 1990 and 1998 for only 4 of 14 indicators (A, Whitman S, Margellos H, Ansell D., 2001)

What Went Wrong? “Where did the field get the idea that evidence of an intervention's efficacy from carefully controlled trials could be generalized as THE best practice for widely varied populations and settings?” Greene, LW. 2001

What Went Wrong? • The gap between research and practice is so wide that the IOM calls it a “chasm” • Use the best available evidence rather than waiting for the best possible evidence • Lack of information about contextual, cultural and historical evidence

What Went Wrong? • Research does not address specific needs or resource limitations • No consistent reporting of outcomes such as QOL change • Little ability to compare programs or understand their resource requirements • Investment = Utilization

Enhancing Research Relevance • Heterogeneous and representative sampling • Multiple and diverse settings • Measures that support translation (level of effort, cost effectiveness, QOL) • Comparisons to alternative programs vs. no treatment groups

Disincentives to CBPR • Less direct control • Longer time lines for research • Intensive involvement of researchers • Giving up power and sharing decision making • Sharing budget and rewards

Value Added of CBPR for Researchers • Refined, new research questions • Community readiness to participate • Fewer barriers to participation • More appropriate research strategies • Higher response rates, recruitment and retention

Value Added of CBPR for Researchers • Enhanced external validity • Stronger alliance between community and academic partners • Improved reach of results to diverse audiences • Better utilization of information • Enhanced capability for sustained research

Evidence of CBPR Effectiveness • What is the value added of participation? • Participation enhances recruitment, uptake, utility and sustainability • Health outcomes remain elusive • Methodological and measurement challenges

Evidence of the Effectiveness of CBPR • Insufficient evidence and too much variation to establish effectiveness of CBPR (AHRQ, 2004). Similar to EBPH findings ( The Commuity Guide, CDC) • CBPR did improve community capacity • Newer studies incorporating evaluation of CBPR outcomes in the pipeline

Research Questions • What CBPR practices are most important to success ? • What measurement strategies can be used across CBPR projects ? • How does variation in CBPR approaches effect process and outcome ? • What does cost-effectiveness analysis tell us about impact ?

Conclusions Despite significant investments, health improvements have eluded poor and minority communities CBPR approaches offer an alternative to traditional models CBPR approaches bring opportunity and new challenges Are you ready?

The Beginning

Resources The NIH Office of Behavioral and Social Sciences Research is sponsoring a one-day technical assistance workshop on community-based participatory research (CBPR) to highlight the advancements of CBPR and facilitate the CBPR Funding Opportunity Announcements released on January 16: • PA-08-074: http://grants.nih.gov/grants/guide/pa-files/PA-08-074.html • PAR-08-075: http://grants.nih.gov/grants/guide/pa-files/PAR-08-075.html • PAR-08-076: http://grants.nih.gov/grants/guide/pa-files/PAR-08-076.html

Resources • The workshop will be held on the NIH campus but there also ways to participate online: Webcast: http://videocast.nih.govPodcast: http://videocast.nih.gov/podcasting For more information, visit http://grants.nih.gov/grants/training/esaig/cbpr_sig.htm • Stay on top of the latest CBPR news and funding announcements Subscribe to the CBPR listserv at https://mailman1.u.washington.edu/mailman/listinfo/cbpr

Resources • COMMUNITY-ENGAGED SCHOLARSHIP FACULTY DEVELOPMENT CHARRETTE Call for Applications (due March 17, 2008) is available at: http://depts.washington.edu/ccph/faculty-engaged.html For more information, email Faculty for the Engaged Campus Deputy Director Piper McGinley at: fipse2@u.washington.edu • Stay connected with the initiative and related work through the Community-Engaged Scholarship electronic discussion group at: https://mailman1.u.washington.edu/mailman/listinfo/comm-engagedscholarship

Acknowledgements This presentation was supported by Cooperative Agreement Number 1-U48-DP-000048 from the Centers for Disease Control and Prevention. The findings and conclusions in this presentation are those of the authors and do not necessarily represent the official position of the Centers for Disease Control and Prevention. http://uic-ihrp.org/iprc

The Road Not Taken (often enough)