The Consumer Health Foundation is the only private foundation working throughout the Washington, D.C. metropolitan region whosemission is dedicated solely to health equity, access, and consumer empowerment. We strive to be a catalyst for social change, opento new ideas, and willing to take risks to advance our mission. We also believe in listening closely to the community for guidance,information, and innovation. With our Community Speakouts, we were interested in starting a new conversation and looked for biganswers to big questions by listening to hundreds of people—many of whom have never been asked about what they believe are thesolutions to the healthcare crisis in our region. The Speakouts offered us a lens into the lives, the experiences, and the insights ofpeople who do not share in the benefits of our healthcare system. The recommendations that follow complement the compellingcommunity-based work already going on that is making a difference. They push the horizon of opportunity for change.

The Consumer Health Foundation believes it has a responsibility to raise its own voice on behalf of those whose voices are neithersought nor heard in the healthcare debate. With this Call to Action, we are publicly committing ourselves to working with all sectors ofour community until we have in place throughout our region the policies, programs, and practices that ensure equitable andaccessible health care for all.

Our six recommendations for regional action to improve health and health care are:

1. Develop a blueprint for a regional specialty care delivery network for the uninsured.

2. Create a personalized, one-stop, regional health information and referral center that will connect consumers to existing resources and services and empower them to demand high-quality, affordable health care.

3. Invest in programs that seek to build a more diverse healthcare workforce.

4. Launch a regional community health data project, beginning with information on health status and disparities.

5. Engage in community-wide health equality dialogues that address racial and ethnic health disparities, particularly the impact of structural racism on the health and well-being of communities of color in the region.

6. Designate neighborhood Wellness Opportunity Zones where incentives are provided for innovative connections between and among all public and private policies, programs, and practices affecting health and well-being.

Credits Writing/editing: Teri Larson and Rachel Wick; Design: Jason Salas; Photography: Bill Fitz-Patrick

Executive Summary

“We have to organize. We have to be a group. We will not get any better services than we demand.”

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You all know what’s wrongwith our healthcare system.

You have seen it up close; yousee it every day. People who

trade health care for food,housing, and other “costs of

living.” People who can’t takeoff work to get care for fear oflosing their jobs. People who

do leave work and sit in aclinic for four hours waiting forsomeone to see them. Peoplewho have no health insurance

and, thus, don’t receivetreatment for acute or chronic

illnesses. People who havehealth insurance that doesn’t

cover the cost of treating theirillness. People who have

health insurance but can’t finda doctor that will accept their

insurance. Doctors andnurses who know in their

hearts that they are rushingthrough patients to meet

dollar goals often directedby administrators. I could

go on and on.

But, today, we’re going tohave a speakout; a town hallmeeting that moves on from

the problems. We live withthem every day, but we must

get to solutions. We must findways to fix this mess, and

consumers must have a voice,must be part of the solutions.

Kojo Nnamdi, WAMU public radio host,in his introduction to the June 2004

Community Health Speakout

That there are many significantand seemingly intractableproblems with the nation’shealthcare system is no secret;the problems have been

thoroughly researched and are well-documented. Solutions are proposed,debated, and implemented or ignoreddepending on which direction the politicalwinds blow. If only words could heal, ournation’s healthcare woes would haveimproved years ago.

But the fact remains that, while ourpoliticians debate how health care shouldbe structured and financed, the mostvulnerable among us continue to strugglewith healthcare concerns and crises on adaily basis. Such is the reality for low- andmoderate-income residents of theWashington, D.C. metropolitan region,where, among other well-documentedproblems, there is a shortage of primarycare physicians serving the poor and morethan enough high-priced specialistsserving the rich.

It is clear to anyone who surveys healthcare in this region that there is afundamental disconnect between thesystem as it functions and the needs of themany consumers it is supposed to serve.Thus, beyond joining the call for broadersystems reform (which we also support),the Consumer Health Foundation (CHF) isbringing the voices of consumers andcommunities to bear on the everydayproblems that keep everyday people fromgetting the health care they need. This isin keeping with our mission to improve thehealth status of the region’s mostvulnerable residents by helping them tobecome actively involved in their ownhealth care.

These are the problems of the workingpoor, who can’t go to public clinicsbecause they work three jobs and theclinics aren’t open when they need them

to be. These are the problems of recentimmigrants, who can’t communicate with adoctor because there are no interpretersavailable at the hospital. These are theproblems of families with limited literacyskills who can’t manage the Medicaidapplication process on their own. Theseare the problems of African Americans,Latinos, and other minorities who don’thave the same access as whites to high-quality healthcare services. These are theproblems of so many in our communitywho simply cannot figure out the systemand their place in it. These are theeveryday problems—barriers—that canmean life or death to a sick patient.

In 2004 and 2005, CHF invited communitymembers from across the D.C.metropolitan region to raise their voicesand speak out about the conditions thatthreaten their health and well being, and,more importantly, to propose creativesolutions to address these problems. Andspeak out they did. This report brieflysummarizes what we heard, but moreimportantly, presents recommendations thatare intended to help local governments,healthcare providers, and foundationsimprove health, healthcare access, andquality of care for the most vulnerableamong us.

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Speaking Up and Speaking Out for Health

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What We DidThe first CHF-sponsored Community HealthSpeakout took place in Washington, D.C. inJune 2004. Close to 250 people attended the event, which was linked tothe Foundation’s annual meeting andfeatured a panel discussion moderated byKojo Nnamdi, host of The Kojo NnamdiShow on WAMU-FM radio. The panelfeatured a range of speakers from publichealth officials and safety net clinicadministrators to consumer healthactivists, including: Dr. Walter Faggett,D.C.’s chief medical officer; Maria Gomez ofMary’s Center for Maternal and ChildHealth; Dr. Joseph Wright of Children’sNational Medical Center; Dianne Camp,community health advocate; Dr. RaymondTerry of the D.C. Department of Health; andMaria Gatling with the Children’s HealthProject of D.C.

The event began with Mr. Nnamdipresenting two scenarios—the true story ofan uninsured fast-food restaurant employeelifted from a newspaper op-ed column anda fictional, but true-to-life story of a singlemother enrolled in Medicaid—thatillustrated what consumers experiencewhen seeking medical care in the District.Panelists were asked to react to theproblems presented in the scenarios andpropose possible solutions. The discussionwas then opened to audience participation.

The second Community Health Speakouttook place in October 2004 at Fiesta D.C.—D.C.’s Latino Heritage Festival. CHFcontracted with the International Migrants’Development Fund (a local non-profitworking on community development forLatino immigrants) to conduct, in Spanish,interviews with 76 randomly selectedfestival-goers as well as two focus groupsof 20 participants each. An additional focusgroup was held with 10 teenagers at theLatin American Youth Center in March2005. The interview and focus groupquestions were designed to elicitparticipants’ opinions about theirexperiences with obtaining health care and their ideas about how they wouldimprove it.

In April 2005, CHF collaborated with theHealth Action Forum of Prince George’sCounty, a consumer health advocacy group,for its 2005 Spring Community HealthSpeakout, held in Landover, Maryland. Theevent, which was attended by more than100 people, included a panel andcommunity discussion, which wasmoderated by Renee Nash of WHUR-FMradio. Panelists included Dr. Vanessa Allen,a family physician; Gwen Clerkley, deputydirector of the Prince George’s CountyHealth Department; Camille A. Exum,Prince George’s County Councilmember(District 7); Nathaniel Exum, MarylandState Senator (24th Legislative District);David Harrington, Prince George’s CountyCouncilmember (District 5); ChristopherKing of Greater Baden Medical Services;and Dr. Akmal Muwwakkil of The EnergyInstitute of the Healing Arts. Again,panelists were asked to react to twoscenarios illustrating the problemsassociated with accessing health care inPrince George’s County, and then discussinnovative solutions to addressing thoseproblems. An open discussion withaudience members followed.

In May 2005, CHF conducted one-on-oneinterviews with 20 patients of various agesand nationalities at the Arlington FreeClinic in Virginia to elicit information fromthem about the barriers to health care—

and ideas about possible solutions forthose barriers—in Arlington’s low-incomecommunities.

During these Speakouts, while we listenedto people talk about the need for specifictypes of reforms in their communities, wealso heard that many of these reformsexisted or were being developedsomeplace else in the region. In response,CHF held a final panel discussion at our10th anniversary annual meeting, Crossingthe Lines for Health: CommunityInspiration, Action and Transformation, inJune 2005. We brought together a panel ofsix community health advocates fromacross the region whose health reformwork addressed some of the problems we heard.

The panelists who shared the details oftheir work with us included: SharonBaskerville, executive director of the D.C.Primary Care Association; CharleneConnolly, provost of the Medical EducationCampus at Northern Virginia CommunityCollege; Dr. Frederick Corder, PrinceGeorge’s County health officer; VincentDeMarco, executive director of theMaryland Citizens Health Initiative;

Rather than stand uphere and make a speechabout what’s wrong withour healthcare system inour community, I’mgoing to tell you acouple of stories. Eachstory will highlight thecomplicated web that isthe healthcare crisis inour region and certainlyaround our country.

Renee Nash, WHUR-FM radio, inher introduction to the April 2005Spring Community Speakout

Steve Galen, executive director of the PrimaryCare Coalition of Montgomery County; andKimberly Perry, executive director of D.C.Hunger Solutions. The event helped to bringcommunities together to share local healthcare reform ideas and to lay the foundationfor working across regional lines.

What We Heard While each of the five Community HealthSpeakouts were intended to—and did—engage local residents in discussionsabout the healthcare needs, priorities, andsolutions in their own communities, somecommon themes emerged across theevents. Participants at every Speakoutraised their voices about the myriad andoften insurmountable barriers to healthcare faced by so many people, includingthose with full-time jobs. Some of thespecific barriers mentioned included thelack of affordable private health insuranceoptions; the lack of high-quality, publicclinics with expanded hours of operation;the need for consistent and quality healthcare for D.C. residents living east of theAnacostia River, particularly in light of theclosure of D.C. General Hospital; thechallenges across the region in gettingaccess to specialty care health services;the lack of recognition on the part of policymakers and others that living conditions,neighborhood amenities, access to decentjobs and quality education all impacthealth status and outcomes; and thesignificant language and other culturalbarriers of many kinds that still existacross the region.

At the Prince George’s County Speakout, aparticipant talked about the difficulties sheand her husband faced in trying to

navigate the healthcare system during hisfatal struggle with prostate cancer. Thecouple operated a holistic wellness centerbut, like many other small businessowners, they could not afford privatehealth insurance. The woman said they feltentirely disconnected from the “crazy anddisjointed” healthcare system, and lackedaccess to even basic information abouttheir rights, options, and availableresources. At the Speakout, though, shespoke less about her terrible experienceand more about her idea to save othersfrom the same fate. She suggestedcreating a nonprofit, consumer-focusedhealthcare networking center for peoplewho want to empower themselves withinformation about their healthcare options.

A particular barrier to health care thatcame up repeatedly at the Speakout eventswas the lack of cultural and linguisticcompetency among health careprofessionals and their institutions.Community members at every Speakoutsaid they experience outrightdiscrimination on the basis of race andethnicity, that they often have difficultycommunicating with healthcareprofessionals because of language accessand literacy challenges, and that theirhealthcare providers do not share theirrace and ethnicity and, therefore, oftenlack cultural understanding.

At one event, a participant made the pointthat a low-income, Spanish-speakingresident might never get health care even ifa public hospital or free clinic was availableto him because the odds are slim that hewould be able to find and/or affordtransportation there or, once there,communicate effectively with an English-speaking medical professional. The

speaker went on to comment on the dearthof culturally competent medical services inthe region and note that those that doexist are severely overloaded and mustturn people away. Clearly, health care couldbe made more accessible as well as moreefficient and effective if providers’ culturaland linguistic competency weresystematically improved.

As with most any discussion about healthcare—particularly barriers to health care—Speakout participants also commented onvarious social conditions that impacthealth. It is well-documented that AfricanAmericans, Latinos, and other minoritiesexperience disparities in health outcomesnot merely as a result of the barriers tohealth care that they face—such as lack ofinsurance or lack of culturally competentproviders—but primarily as a result ofbroader societal inequality. For example,good health is impossible in the face ofunequal access to high-quality education;to job opportunities that pay a fair, livingwage; and to safe and affordable housingin clean neighborhoods, where local

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Track these diseases, find out where your community needs the help, get the data you need. . .because if you don’t look at these things, you’re going to continue on this merry-go-round andwe’re going to be back here next year talking about the same thing.

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grocery stores offer affordable, healthy foods. Speakout participants also notedthat their largely minority communities are plagued disproportionately by particular health problems, such as asthma and diabetes.

One participant said, “I believe we cannot progress because the system isbogged down with racial and ethnic healthand socioeconomic disparities across the board.”

Beyond the many community memberswho spoke out, we also heard from leadersof strong, community-based organizationsworking to improve health and well-beingacross the region, including local andregional primary care associations andcoalitions, a community college, a localpublic health department, and numeroushealth advocacy groups. Theseorganizations are committed to improvingand expanding the healthcare safety net;providing mental and behavioral healthservices in a primary care setting; buildinga more diverse, culturally competenthealthcare workforce; and influencing stateand local health policy to expand healthinsurance coverage. These groups havebeen successful because they haveengaged citizens and built political will,

received leadership and support from keystakeholders, formed coalitions acrossdiverse sectors, grounded their ideas andplans in solid research, demonstratedcultural competence, exercised creativityand “outside-the-box” thinking, and, aboveall, practiced patience and persistence.

What We RecommendWhile the Consumer Health Foundation iscommitted to moving forward on severalfronts in response to the Speakouts, wealso see multiple, immediateopportunities for local governments,healthcare providers, and our foundationcolleagues to do so as well. The sixrecommendations that follow are real,they are doable, and, if implemented,would make an immediate and, webelieve, lasting difference for consumers.We believe that these actions will resultin significant advances toward equitableand accessible health care for all in ourregion and that they complement andbuild upon the significant work bynonprofits, government, and the localfunding community already underway inthe region.

The six major recommendations forregional action are:

1. Develop a blueprint for a regionalspecialty care delivery network forthe uninsured.

Coordinated efforts are underway toimprove access to high-quality primarycare for the uninsured in our region, butmajor gaps exist when consumers needcare beyond our safety net clinics. Aregional specialty care delivery networkwould ensure that patients coping withillness do not delay care or get lost in aconfusing system at a time when they aremost vulnerable.

Primary care leaders and specialty careproviders, with support from government,should create and coordinate localspecialty care delivery systems so thatthe resources required to care for

uninsured patients are adequate andfairly distributed across jurisdictions.

2. Create a personalized, one-stop,regional health information andreferral center that will connectconsumers to existing resources andservices and empower them todemand high-quality, affordablehealth care.

The U.S. healthcare system is oftendescribed as fragmented, and this isespecially true for uninsured consumers.There is no single place people can go forinformation on the availability, cost, andquality of health care services in the region.

The Consumer Health Foundation iscommitted to launching the NgoziProject: A Consumer Health Access and Empowerment Initiative, to providelow-income, uninsured consumers withhighly individualized information,decision-making tools, and practicalstrategies for self-advocacy as theynavigate the healthcare system.

3. Invest in programs that seek to builda more diverse healthcare workforce.

Inadequate language access services andcultural misunderstanding arecompromising quality of care in ourregion. Educating, training, andemploying immigrants and otherminorities as community health workers,

If you need certain kindsof lab work or an MRI orx-ray, these are notprovided in communityhealth clinics. We need a real public health caresystem in the city. Weneed a whole range ofpublic healthcareinstitutions in the city.

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interpreters, administrative staff,technicians, and clinicians will alleviatecurrent gaps in services and cultivate astrong, diverse healthcare workforce forour future. Foundations and businessesshould invest in promising healthcareworkforce development programscurrently underway in our region.

4. Launch a regional communityhealth data project, beginning with information on health statusand disparities.

Community health data needs to becollected in a consistent fashion in orderto accurately assess residents’ healthstatus and to strategically target fundingfor programs and services. In addition,new approaches are needed tounderstand how intra-regional migrationand shifting demographics are affectingthe health of our communities.

Public health departments should partnerwith community-based organizations,regional entities like the MetropolitanWashington Area Council ofGovernments, and local schools of publichealth, to perform regional datacollection, coordination, and analysis.

5. Engage in community-wide healthequality dialogues that address racialand ethnic health disparities,particularly the impact of structuralracism on the health and well-beingof communities of color in the region.

Creating health equality involves morethan just improving the quality andavailability of health care. It requiresunderstanding the roots of healthinequality, namely, the impact ofstructural racism on the lives and healthof people of color. Once we understandhow history, institutional practices, publicpolicies, and cultural stereotypesintertwine in ways that perpetuatediscrimination, inhibit opportunity andeconomic mobility, and eventually lead topoor health outcomes, we can create anew agenda for achieving health equalityand lasting social change.

To start the conversation in our region,the Consumer Health Foundation willaddress these issues at its 2006 annualmeeting, Roots and Remedies: CreatingHealth Equality through Social Justice,and pledges to work with the communityto implement innovative strategies forreducing health disparities.

6. Designate neighborhood WellnessOpportunity Zones where incentivesare provided for innovative connectionsbetween all public and private policies,programs, and practices affectinghealth and well-being.

Residents have a vision for healthycommunities where there are grocerystores selling fresh fruits and vegetables;clean, safe parks and other places towalk and exercise; affordable housing;

reliable public transportation; andbusinesses that pay employees a livingwage. New strategies are needed toensure that all of our communities reapthe benefits of the tremendous growthand development occurring in our region.

Local governments should designateneighborhood Wellness OpportunityZones in areas where residents’ health,well-being, and potential are at greatestrisk. In these areas, financial and otherincentives would be available for projectsthat seek to improve residents’ quality oflife and the health of the community.Government policies, regulations, andprograms would reinforce these actions.

These six recommendations emergedfrom a much more comprehensive set ofactions. For a complete list ofrecommendations and additionalinformation in the areas of consumereducation and empowerment, culturaland linguistic competency, and healthand social justice, please visit ourwebsite at www.consumerhealthfdn.org.

We have this appetite to build all these residentialsubdivisions and what have you, but we don’t tie this intohow to build communities. And a community has access tohealth care, has positive schools, has pavements wherechildren or families can walk, has centers where people can go.

Speakout panelist

Health is not just abouthealth care.

Speakout panelist

Consumer Health Foundation1400 16th Street, NW, #710

Washington, D.C. 20036-2224Phone: 202.939.3390

Fax: 202.939.3391chf@consumerhealthfdn.orgwww.consumerhealthfdn.org