Blasé N. Polite|Lucile L. Adams?Campbell|Otis W. Brawley|Nina A. Bickell|John M. Carethers|Christopher R. Flowers|Margaret Foti|Scarlett Lin Gomez|Jennifer J. Griggs|Christopher S. Lathan|Christopher I. Li|J. Leonard Lichtenfeld|Worta McCaskill?Stevens|Electra D. Paskett
Charting the Future of Cancer Health Disparities Research: A Position Statement from the American Association for Cancer Research, the American Cancer Society, the American Society of Clinical Oncology, and the National Cancer Institute
University of Chicago|American Cancer Society|Icahn School of Medicine at Mount Sinai|University of Michigan–Ann Arbor|Emory University|American Association For Cancer Research|Cancer Prevention Institute of California|University of Michigan–Ann Arbor|Dana-Farber Cancer Institute|Fred Hutch Cancer Center|American Cancer Society|National Cancer Institute|Ohio University
academic field cancer health disparities stimulated us civil rights movement concerns civil rights led concerns equality health care first publications make observation black americans higher rates death result certain cancers compared white americans published early 1970s 1 2 discipline concerned differences first called minority health research later special populations health special populations research national cancer institute nci defines cancer health disparities adverse differences cancer incidence cancer prevalence cancer mortality cancer survivorship burden cancer related health conditions exist among specific population groups united states 3 however greater renewed acknowledgment health disparities rooted within context historical contextual inequities united states many health disparities considered health inequities 4the national cancer act 1971 created surveillance epidemiology end results seer program within nci program began collecting incidence mortality survival data race early 1970s number populationbased registries around united states seer program improved documentation differences outcomes analyzed blackwhite studies 5 studies especially demonstrated differences treatment patterns higher proportion blacks receiving inappropriate cancer care compared whitesthe discipline grew focus blackwhite differences encompass differences outcomes number racial ethnic groups well cohorts defined age sex socioeconomic status ses social determinants health even greater appreciation disparities among communities whether rural versus urban even state region definition health outcomes also broadened beyond death ratesthe field health disparities simply description population differences call cultural competence among health care providers today field transdisciplinary integrating basic science clinical science policy epidemiology social sciences involves people trained diverse nonmedical fields education economics sociology religion geography anthropology field also dynamic changes better granular statistics greater understanding causes health disparities new challenges mitigate underlying causes emerged example 1970s breast cancer death rate black white american women today death rate substantially higher blacks compared whites 6 policy changes also created opportunities challenges affordable care act allowed medicaid expansion state expansion adopted 32 states district columbia create new challenge poor residents states expanded access care residents states essential future policy changes carefully designed increase rather decrease equitable access care throughout cancer continuum population categorizations also redefined asian category includes korean americans pakistani americans pacific islander category often merged asian category includes native hawaiians samoans populations incredibly heterogeneous dramatically different cancer statisticsin 2015 representatives four leading cancer organizations american association cancer research american cancer society american society clinical oncology asco nci began meet discuss state health disparities united states discussions involved state cancer health disparities research could done move forward discussions purposely meant comprehensive review cancer health disparities research rather meeting resulting document aimed identify issues health disparities research make specific recommendations improve way disparities research conducted disseminatedthis statement presents unified strategy among four leading cancer organizations united states promote cooperation among investigators areas cancer health disparities research community ensure cancer research benefits populations patients regardless race ethnicity age gender identity sexual orientation ses communities livedisparities outcomes across cancer continuum identified numerous medically underserved populations including racial ethnic minorities patients lower ses addition individual social status social contextual community factors neighborhood safety social cohesion availability healthy foods residential segregation play important role health individuals populations factors intersect generate larger disparities 7 8to understand fully address cancer health disparities complete consistent accurate collection patient community structural factors put people risk disparate outcomes essential unfortunately cancer health disparities research often fraught missing inaccurate overly simplified patientlevel data research failed consider communitylevel factors described 911for part manner data collected integrated disparities research suboptimal literature characterized variable methodology collection factors put patients communities risk disparate care outcomes example although race ethnicity distinct constructs often conflated person identified hispanic without identification race many studies investigate cancer care outcomes according socioeconomic position arealevel data socioeconomic position whereas others use composite measures valuable many cases identifying disparities measures fall short providing richness data needed understand individuals socioeconomic position health literacy numeracy rarely assessed practice available administrative research databases finally methods uniform data collection information sexual orientation gender identity infancy despite calls data collection institute medicine among others 12disparities cancer incidence pronounced longstanding drivers disparities multifactorial multilevel include sociodemographic factors access health care risk factor profiles lifestylehealth habits cultural perceptions biologic differences genetic predisposition disparities cancers single etiologic factors account substantial proportion disease eg human papillomavirus cervical cancer helicobacter pylori stomach cancer reasonably understood explained disparities many common etiologically heterogeneous cancers breast prostate colorectal cancers remain much less well understoodmultilevel approaches needed advance knowledge relevant addressing disparities cancer incidence rates one approach design implement observational studies focused population disparities exist advance knowledge etiology inform novel prevention strategies successful example effort african american breast cancer epidemiology risk amber consortium multicenter consortium combined data biospecimens 7500 african american patients breast cancer 17000 healthy controls representing largest study breast cancer african american women united states 14 yielded number insights multilevel risk factors specific major molecular subtypes breast cancer among african american women 1517there also need studies focused identifying genetic contributors cancer health disparities recent work focused prioritization candidate variants relevant prostate cancer risk within context genetic ancestry based ancestry informative markers across european african japanese latino ancestry 18 furthermore african ancestry prostate cancer genomewide association studies gwas consortium reported susceptibility loci aggressive prostate cancer specific men african ancestry 19although cancer risk factors well established biologic mechanisms impact cancer risk varies across different populations remain incompletely understood example variations diet hypothesized primary driver dramatic variations colorectal cancer incidence rates observed across populations recent research evaluated impact different diets microbiota composition function turn affects production metabolites either promote mucosal health proinflammatoryneoplastic gut study compared americans african ancestry relatively high incidence colorectal cancer rural south africans comparatively low colorectal cancer incidence rate demonstrated typical us diet high meat fat intake increases mucosal proliferation rates marker cancer risk fed populations whereas typical highfiber south african diets associated low proliferation rates fed groups demonstrates diet profound fairly immediate impact gut microbiome either promote suppress tumors 20cancer outcome disparities well documented racial ethnic minorities presentation advanced stages cancer explains much difference however even controlling stage cancer diagnosis survival disparities persist concerning rather improving time cancers colon cancer stagespecific disparities actually worsening 21 reason growing disparity completely clear involves socioeconomic issues education status level insurance access medical care even studies normalize socioeconomic issues limitations cited defining measures section disparities disproportionally affect us minority populations still demonstrated several cancers may highlight notsowellunderstood interplay genetic predisposition environmental exposure lifestyle diet modifies cancer risk 22 23 ultimately growing postdiagnosis survival disparities caused interplay system social biologic environmental factors documenting addressing interactions key eliminating disparitiesthe role systemlevel social determinants explaining cancer health disparities best demonstrated recognizing disparities vary widely across united states states show almost disparities whereas others show striking ones 24 also know disparities treatment cancer differ treatment differences accounted either use standardized therapies clinical trial multivariable modeling cancerspecific survival disparities often disappear also clear examples successful systemlevel reform 21 25 26 know therefore solvable problemthe key step toward improving care reducing cancer health disparities requires accurate measurement meaningful variables fed back real time key stakeholders system followed meaningful action continued monitoring ensure action successful determining meaningful measurement across cancer spectrum may vary sociocultural factors require patient stakeholder input systembased practices formed core recent institute medicine report systems practices care socially atrisk populations 27 systems thought macro level state county city governments way individual practice physician level implementation science inform best approaches ensure delivery highquality cancer carecancers start result chronic inflammation inflammation modify behavior cancer biomarkers elevated microsatellite alterations selected tetranucleotide repeats emast detected inflammationladen cancers associated worse patient outcome increased metastasis appear common among african americans microsatelliteunstable msi cancers overall good prognosis may half common among african americans compared whites 28 emast msi implications 1 chemotherapeutic response 2 immunotherapeutic response terms race aspects studied furthermore much evidence microbiome influence 1 inflammation 2 response chemotherapy 3 cancer precancerous lesion formation also microbiome determined diet factors aspects examined race mind additionally driver genes may different within type cancer patients different genetic backgrounds implications correct definitive therapeutic approaches 29most studies use human specimens study aspects cancer race ethnicity come limited individual collections sparse clinicalepidemiologic information rare exception exceptions tend ncifunded projects north carolina colon cancer study peer review thoughtful input collection made controls surveys linked information make collection meaningful comprehensive information potentially useful future studies possessed longevity however types collections biorepositories include tumor nontumor specimens created diverse samples representative us census populationcurrent models health care delivery highly focused use technology innovation improve patient outcomes across disease processes demonstrated focus precision medicine cancer treatment 3236 although oncology attempts embrace approach impact innovative treatments hampered poor translation innovation health care systems patients diverse community settings 37 38 precision medicine cancer accelerated part beau biden cancer moonshot initiatives importance community engagement ensure patients benefit advances cannot overlooked cancer health disparities must taken consideration design execution evaluation programscommunityengaged research cer documented effective beneficial method engaging communities formulating research relevance impact researchers affected communities 3942 involving relevant community stakeholders research planning stages allows deeper understanding community needs allows researchers iterative method evaluating research questions active realistic milieu simultaneously creates valuable vehicle active dissemination research findings communities intended serve cer offers potential improve processes outcomes several areas including care delivery continuity care managing comorbidities supportive care 42unfortunately dearth support oncology health professionals choose work cer given necessity infrastructure relationship building complex personal interactions communities community organizations need establish longterm benefits community research project completed importantly cer requires broad range expertise across multiple disciplines also investigators skilled team science approach 43 benefit type team science touted across disciplines however implementation limited 44a lack workforce diversity identified barrier improving access care underserved minority groups well advancing research health disparities 45 46 organizations including asco american society hematology sought increase workforce diversity oncology awards mentoring programs expose underrepresented minorities careers oncology medical student resident fellowship levels addition nci center reduce cancer health disparities american association cancer research administer several programs aimed training next generation competitive researchers cancer cancer health disparities research increased efforts types needed develop oncology workforce reflects diversity patients servesfinally cer often align traditional grant timelines require investment behalf research institutions personnel resources without investment remain difficult create true synergy cer rapid discoveries occur cancer researchclinical trials important reliable means available provide scientific evidence effective care management patients cancer individuals risk cancer 47 complex trials incorporate advanced technologies necessitate new approaches clinical care teams diverse oncology practices putative goal clinical trials provide evidence valid generalizable future trials must include research questions consider multifactorial multilevel components characterize populations greatest cancer burden section proposes strategies advance disparities research within current cancer clinical trials system andor within new network disparitiesfocused programsstringent criteria participation cancer clinical trials common procedures providing trial information barriers enrollment racialethnic minorities rural residents older patients 65 years patients lower ses limited english proficiency low health literacy comorbidities high increasing prevalence chronic diseases risk factors chronic diseases obesity earlyonset diabetes must inform eligibility criteria represent populations fully cancer protocols example african americans bear disproportionate burden comorbidities typically exclude participants studies difficult determine comorbidities could reasonably eliminated exclusion criteria could sufficiently monitored managed within study framework 48 addition frontend enrollment barriers experience cancer prevention treatment trials also shown underrepresented populations often enrolled later recruitment process subsequent power calculations frequently support subpopulation analysesrecruitment retention rates key variables influence outcome clinical cancer studies particularly trials minorities disproportionately higher disease burdens breast prostate colorectal lung cancers 49 prevention screening treatment trials suboptimal recruitment retention rates exist similarly lower rates exist patients transition pediatric adolescent youngadult cancers many issues prevailing sociodemographics trust issues comorbidity burdens competing priorities contribute situation 50 however community engagement vital address fundamental recruitment retention challenges cloud clinical trials setting cer demonstrated promote trust colearning capacity building sharing dissemination information needed short longterm success 51 example communitybased retention intervention study evaluated effectiveness using community health advisors promote retention adherence lowincome rural populations found community health advisors trained serve research partners effective improvement retention adherence 52finally existing federally funded cancer clinical trial networks pharmaceutical partners require evercomplex array biospecimens often collected multiple time points thought given best augment capacity biospecimen teams study infrastructures eg surgical pathology departments needed support collection preparation adequate specimens lowresource institutions centers seek recruit underrepresented populationsthe field cancer health disparities evolved complex science established multidisciplinary field cancer research unfortunately rigor required conduct research uniformly applied infrastructure needed take next level lasting solutions found limited purpose article jointly written experts four esteemed organizations guide development advances area hope statement used public private organizations inform specific investments made improve cancer health disparities research thereby ultimately eliminating identified disparities cancer incidence quality care outcomesseveral recommendations action items emergedwe clearly entered new phase cancer health disparities researchone potential benefit significantly collaborations across disciplines sectors given looming crisis cancer incidence mortality disparities affects minorities medically underserved collective hope period cancer research significant breakthroughs discovered opportunities apply new knowledge populations thus eliminate cancer health disparities current future generationsbn polite acted consulting advisory role astrazeneca pfizer paid member speakers bureau bayeronyx received research funding merck received fees gerson lehrman group cr flowers acted consulting advisory role optumrx seattle genetics bayer gilead sciences received research funding via institution acerta pharma infinity pharmaceuticals onyx janssen oncology gilead sciences celgene tg therapeutics genentechroche pharmacyclics abbvie immune design received travel accommodations expenses gilead sciences celgene genentechroche cs lathan received honoraria per acted consulting advisory role gerson lehrman group lilly bristolmyers squibb received research funding cvs health jl lichtenfeld reports stock ownership general electric ibm johnson johnson received honoraria aetna received travel accommodations expenses aetna ed paskett reports immediate family member stock ownership pfizer meridian bioscience received research funding via institution merck sharp dohme potential conflicts interest disclosed authorsconception design bn polite adamscampbell ow brawley n bickell jm carethers cr flowers foti sl gomez jj griggs cs lathan ci li jl lichtenfeld w mccaskillstevens ed paskettcollection assembly data bn polite adamscampbell ow brawley n bickell jm carethers cr flowers foti sl gomez jj griggs cs lathan ci li jl lichtenfeld w mccaskillstevens ed paskettdata analysis interpretation bn polite adamscampbell ow brawley n bickell jm carethers cr flowers foti sl gomez jj griggs cs lathan ci li jl lichtenfeld w mccaskillstevens ed paskettmanuscript writing bn polite adamscampbell ow brawley n bickell jm carethers cr flowers foti sl gomez jj griggs cs lathan ci li jl lichtenfeld w mccaskillstevens ed paskettfinal approval manuscript bn polite adamscampbell ow brawley n bickell jm carethers cr flowers foti sl gomez jj griggs cs lathan ci li jl lichtenfeld w mccaskillstevens ed paskettaccountable aspects work bn polite adamscampbell ow brawley n bickell jm carethers cr flowers foti sl gomez jj griggs cs lathan ci li jl lichtenfeld w mccaskillstevens ed paskettwe thank leadership aacr acs asco nci stewardship process special thanks tawanna brooks lyngine calizo michael francisco barry kramer christine rullo dana wollins