Introduction

Community-based participatoryresearch (CBPR) is an approach tohealth and environmental researchmeant to increase the value of studiesfor both researchers and thecommunities participating in a study.In 2001, the Agency for HealthcareResearch and Quality (AHRQ)collaborated with several Federalagencies and the W.K. KelloggFoundation to convene a 2-dayconference designed to address threekey barriers to CBPR: (1) insufficientcommunity incentives (i.e., staffing andresources) to play a partnership role inCBPR projects, (2) insufficientacademic resources (i.e., staffing andresources) for researchers to play apartnership role in CBPR projects, and(3) inadequate funding and fundingmechanisms that are not sensitive tocommunity involvement. Theconference recommended that AHRQcommission one of its Evidence-based

Practice Centers (EPC) to studyexisting evidence on the conduct andevaluation of CBPR. As a result, in2004, AHRQ published the RTIInternational–University of NorthCarolina EPC’s systematic review andsynthesis of the scientific literatureregarding CBPR and its role inimproving community health.*

A formal definition of CBPR wasdeveloped for this EPC Report:

“Community-based participatoryresearch is a collaborative researchapproach that is designed to ensureand establish structures forparticipation by communitiesaffected by the issue being studied,representatives of organizations, andresearchers in all aspects of theresearch process to improve healthand well-being through takingaction, including social change.”

The CBPR approach is particularlyattractive for academics and publichealth professionals struggling to

AHRQ Activities UsingCommunity-Based ParticipatoryResearch to Address HealthCare Disparities

P R O G R A M B R I E F

AHRQ’s mission is to improve the quality,safety, efficiency, and effectiveness of healthcare by:

• Using evidence to improve health care.

• Improving health care outcomes throughresearch.

• Transforming research into practice.

Advancing Excellence in Health Care • www.ahrq.govAgency for Healthcare Research and Quality

* See p.4, under “AHRQ Reports on CBPR.”

address the persistent problems ofhealth care disparities in populationsthat the U.S. Department of Healthand Human Services has designated aspriority populations. These populationsinclude historically underrepresentedpopulations, such as racial and ethnicminorities; low-income, rural, andinner-city populations; women; andchildren.

Benefits

When conducted properly, CBPRbenefits community participants, healthcare practitioners, and researchers alike.It creates bridges between scientists andthe communities that participate in thestudy through the use of sharedknowledge and valuable experiences. Byinvolving members of the communityin the research design, the collaborationlends itself to:

• The selection of a relevant researchquestion.

• Development of culturallyappropriate measurementinstruments.

• A deeper understanding of thecommunity’s unique circumstances.

Community involvement helps recruitsubjects and reduces possible distrust ofresearchers and public healthprofessionals as “outsiders.” In manycases, community involvement helpsbuild its capacity to participate infuture research. Communityinvolvement helps researchers developways of communicating andimplementing their findings within thecommunity and to academic andclinical peers. Finally, participatoryresearch collaborations can help bringin needed funding, assist in developingproposals for new programs, and aid indeveloping comprehensive evaluationsof community needs. Community

groups often cannot do these things ontheir own. In many instances,community members’ involvement inresearch has had a profound impact onenvironmental health issues and socialdeterminants of health.

Approaches

In one approach to CBPR, community-based organizations or communitygroups partner with academicresearchers to ensure that selectedresearch topics are relevant andresponsive to their identified needs.These groups may be churches, churchmembers, neighborhood organizations,community residents, or other socialorganizations. These groups play adirect role in the design and conduct ofthe research study by:

• Bringing community members intothe study as partners, not justsubjects.

• Using the knowledge of thecommunity to understand healthproblems and to design activitiesthat improve health care.

• Connecting community membersdirectly with how the research isdone and its results.

• Providing the immediate benefits ofthe research results to thecommunity that participated in thestudy.

In CBPR, community members are alsoinvolved in dissemination of researchand findings. This involvement canhelp improve the quality of life andhealth care in the community byputting new knowledge in the hands ofthose who need to make changes.

Practice-based research networks(PBRNs), consisting of community-based practices that come together toconduct health care research, can beanother partner in working with the

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community. AHRQ funds a number ofPBRNs for health services research, andthe members of these networks areoften closer than academic researchersto the local geographic area, and havemore direct involvement with prioritypopulations. A number of AHRQ-funded studies that PBRNs conduct useCBPR as the research model (see“AHRQ Grants Involving CBPR,”below).

Challenges

The 2004 EPC Report noted a numberof challenges facing the growth ofCBPR. These include:

• Improving research quality byresearchers selecting the strongestpossible study design, measurementapproach, data collection plan, andanalysis strategy that provides somebenefit to all participants from thecommunity.

• Ensuring that capacity-building incollaborative research occurs forboth the community and theresearch team.

• Educating funding organizations todevelop Requests for Applicationsthat adhere to CBPR principles.

• Improving the quality of reports onCBPR studies published in the peer-reviewed literature.

AHRQ Grants Involving CBPR

Stroke Telemedicine Access RecoveryProject (HS17956). PrincipalInvestigator (PI): Patricia C. Gregory,M.D.; University of North Carolina,Chapel Hill. This career-developmentaward provides training and mentoringin CBPR to a clinician-scientistproviding pilot data for a study ofbarriers to successful implementation ofa rural hospital’s community-basedStroke Telemedicine Access Recovery, orSTAR, project. (Ends 2014)

Building Health Services ResearchCapacity for Tribes in Montana andWyoming (HS14034). PI: GordonBelcourt, M.A., M.P.H.; Montana-Wyoming Tribal Leaders Council. Thisgrant provides funding for theMontana-Wyoming Tribal LeadersCouncil to continue to build capacityto address priority health issuesidentified by the tribes; build capacityand infrastructure for tribalparticipatory research focused on healthpromotion, prevention, andmanagement of chronic diseases; andincrease support for culturallyappropriate health programs and for therole of traditional medicinepractitioners. (Ends 2011)

Communities as Partners in CancerClinical Trials (HS16471). PI: SarenaD. Seifer, M.D., Community-CampusPartnerships for Health. This grantsupports a three-part conference seriesto create a conceptual framework forcommunities as partners in cancerclinical trials and explores theapplication of CBPR principles andapproaches to key areas of cancerresearch. (Ends 2009)

Exploring the Role of SecondaryConditions in Nursing HomeTransitions (HS16166). PI: Tom W.Seekins, Ph.D.; University of Montana.This study uses CBPR principles tounderstand the role of secondaryconditions in transition from thenursing home to the community anduses this understanding to modify apreviously demonstrated interventionproject. (Ends 2009)

We Will Not Be Moved: The BlackChurch Health Movement,1900–1935 (HS10294). PI: JacquelineM. Brooks Carthon, Ph.D.; Universityof Pennsylvania School of Nursing.This study explored the role of blackchurches in Philadelphia in providingservices to congregants and others

during a period when health careorganizations were less accessible tomembers of the black community. Thelessons learned are of criticalimportance to health disparitiesresearchers. (10/1/2007 to 10/31/2008)

A National Assisted Living CBPRPartnership to Improve MedicationManagement (HS16171). PI: SherylZimmerman, Ph.D.; University ofNorth Carolina, Chapel Hill. Thisgrant provided support to a nationalpartnership of 10 research organizationsconcerned with improvement ofassisted living through application ofCBPR principles. Initial efforts were toimprove medication management inassisted living facilities. (9/1/2006 to8/31/2008).

The Creation of PBRN to StudyHealth Care Delivery to aTransitioning Community(HS16023). PI: Michael Dulin;Carolinas Medical Center/University ofNorth Carolina, Charlotte. This studyused a collaboration betweenacademics, primary care ambulatoryclinics, and community healthorganizations to understand theunderuse of health care resources by thegrowing Hispanic community inCharlotte. (6/1/2006 to 5/31/2008)

Community Integration After SpinalCord Injury: Using Photovoice toIdentify Barriers (HS16941). PI: Susan D. Newman, Ph.D.; MedicalUniversity of South Carolina. Thisstudy applied participatorymethodology to focus research on issuesof greatest relevance to individuals withspinal cord injuries. It trained thesubjects in the use of cameras todocument the barriers and facilitatorsthey encounter in the community,using semistructured individualinterviews to provide additionalinformation. (6/1/2007 to 5/31/2008)

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Making Chronic Kidney DiseaseGuidelines Work in UnderservedPractices (HS16031). PI: Chester H.Fox, M.D.; State University of NewYork at Buffalo. Chronic kidneydisease, a worldwide public health issue,is four times more likely to burdenminority populations. This studysought to use participatory researchmethods to assess provider- and staff-identified barriers to implementingevidence-based guidelines for chronickidney disease in minority populations.(6/1/2006 to 5/31/2008)

International Meeting on IndigenousChild Health (HS16753). PI: SunnahKim, B.S.N., M.S.; American Academyof Pediatrics. This grant providedfunding for an international meetinginvolving U.S. and Canadianorganizations. One of the conference’sobjectives was to describe CBPRfindings about the health and healthcare of indigenous populations.(12/1/2006 to 11/30/2007)

National Conference: Quality HealthCare for Diverse Populations(HS15499). PI: Dennis Andrulis,Ph.D., M.P.H.; State University of NewYork Downstate Medical Center. Thisgrant funded the fourth NationalConference on Quality Health Care forCulturally Diverse Populations, whichhighlighted the best of culturallycompetent health care to nationalhealth organizations and leaders,including communities. (9/1/2004 to8/31/2005)

Overcoming Health RacialDisparities (HS10861). PI: Timothy S.Carey, M.D., M.P.H.; University ofNorth Carolina, Chapel Hill. Apartnership between the University ofNorth Carolina and two historicallyblack North Carolina universities(North Carolina Central and ShawUniversities), the goal of the project was

to understand and eliminate healthdisparities for adult cancer and otherchronic illness among black adults,particularly rural black populations.(9/1/2003 to 8/31/2006)

Adult Health and Disabilities inThree Housing Conditions(HS13977). PI: Pei-Shu Ho; MedstarResearch Institute. The projectsupported the National RehabilitationHospital’s Center for Health andDisability Research in partnering with acommunity-centered disability group tocarry out a CBPR study on the healthstatus and health care needs of low-income or impoverished working-agepeople with physical impairments livingin the District of Columbia. (6/1/2004to 11/30/2006)

Development of an Enabling ServicesDatabase at Community HealthCenters (HS13401). PI: Heidi Park;New York Academy of Medicine. Thisgrant funded a pilot CBPR researchproject to work with the Association ofAsian Pacific Islander CommunityHealth Organizations and theirmember health centers to collect dataon services that these centers provide toimprove access to care for AsianAmerican/Pacific Islander patients.(9/1/2003 to 8/31/2005)

AHRQ Reports on CBPR

Viswanathan M, Ammerman A, Eng E,et al. Community-based ParticipatoryResearch: Assessing the Evidence. EvidenceReport/Technology Assessment No. 99(Prepared by RTI-University of NorthCarolina Evidence-based PracticeCenter under Contract No. 290-02-0016). AHRQ Publication No. 04-E022. Rockville, MD: Agency forHealthcare Research and Quality.August 2004.

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Ford JG, Howerton MW, Bolen S, etal. Knowledge and Access to Informationon Recruitment of UnderrepresentedPopulations to Cancer Clinical Trials.Evidence Report/TechnologyAssessment No. 122 (Prepared by theJohns Hopkins University Evidence-based Practice Center under ContractNo. 290-02-0018.) AHRQ PublicationNo. 05-E019-2. Rockville, MD:Agency for Healthcare Research andQuality. June 2005.

AHRQ-Funded CBPRPublications

Horowitz CR, Robinson M, Seifer S.Community-based participatoryresearch from the margin to themainstream: are researchers prepared?Circulation 2009 May 19; 119(19):263-–2642.

Kim MT, Kim EY, Han HR, et al. Maileducation is as effective as in-classeducation in hypertensive Koreanpatients. J Clin Hypertens (Greenwich)2008 Mar; 10(3):176-184.

Ancker JS, Kukafka R. A combinedqualitative method for testing aninteractive risk communication tool.AMIA Annu Symp Proc 2007; 16-20.[Electronic publication.]

Noe TD, Manson SM, Croy C, et al.The influence of community-basedparticipatory research principles on thelikelihood of participation in healthresearch in American Indiancommunities. Ethn Dis 2007 Winter;17(1 Suppl 1):S1-6-14.

Van Voorst RF, Araya-Guerra R, FelzienM, et al. Rural community members’perceptions of harm from medicalmistakes: a High Plains ResearchNetwork (HPRN) Study. J Am BoardFam Med 2007 Mar-Apr; 20(2):135-143.

Leonhardt KK, Deborah B, Pagel P.Partners in safety: implementing acommunity-based patient safetyadvisory council. WMJ 2006 Dec;105(8):54-59.

Anderko L, Lundeen S, Bartz C. TheMidwest Nursing Centers ConsortiumResearch Network: translating researchinto practice. Policy Polit Nurs Pract2006 May; 7(2):101-109.

Love MM, Pearce KA, Williamson,MA, et al. Patients, practices, andrelationships: challenges and lessonslearned from the Kentucky AmbulatoryNetwork. J Am Board Fam Med 2006Jan-Feb; 19(1):75-84.

Carey TS, Howard DL, Goldmon M,et al. Developing effectiveinteruniversity partnerships andcommunity-based research to addresshealth disparities. Acad Med 2005 Nov;80(11):1039-1045.

Anderko L, Bartz C Lundeen S.Practice-based research networks:nursing centers and communitiesworking collaboratively to reduce healthdisparities. Nurs Clin North Am 2005Dec; 40(4):747-758, xi–xii.

Anderson SR, Belcourt GM, LangwellKM. Building healthy tribal nations inMontana and Wyoming throughcollaborative research and development.Am J Public Health 2005 May;95(5):784-789.

Manson SM, Garroutte E, Goins RT, etal. Access, relevance, and control in theresearch process: lessons from Indiancountry. J Aging Health 2004 Nov;16(5 Suppl.);58S-77S.

External Resources

Community-Campus Partnerships forHealth

A national nonprofit organization thatsupports CBPR partnerships,Community-Campus Partnerships forHealth (CCPH) maintains a Web siteof CBPR resources, includingdefinitions, principles, tools, reports,presentations, journal articles, syllabusesand course materials, Web links, andelectronic discussion groups. It can befound on the Web athttp://www.ccph.info. CCPH’sbiweekly e-newsletter, PartnershipMatters, compiles timelyannouncements about CBPR grants,conferences, and publications. Tosubscribe, send an e-mail toccphuw@u.washington.edu or visithttp://depts.washington.edu/ccph/enews.html.

Community-Based Public HealthCaucus

This group, affiliated with theAmerican Public Health Association, isguided by the belief that “communitylies at the heart of public health, andthat interventions work best when theyare rooted in the values, knowledge,expertise, and interests of thecommunity itself,” according to its Website, http://www.sph.umich.edu/cbphcaucus/. The caucus can bereached by e-mailingcbphcaucus@umich.edu.

Additional Information

For further information about AHRQ’sinvolvement in community-basedparticipatory research, contact:

Cecilia Rivera Casale, Ph.D.AHRQ Senior Advisor for Minority Health

301-427-1547Cecilia.Casale@ahrq.hhs.gov

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www.ahrq.gov

AHRQ Pub. No. 09-P012September 2009