A GIVING SMARTER GUIDE
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AUTHORSLEADAUTHORSMaureenJapha,JDErikLontok,PhD
EbonyMosleyDanielleSalka
CONTRIBUTINGAUTHORSLaTeseBriggs,PhDSonyaDumanis,PhDHeatherFields
YooriKim,MSEkeminiRiley,PhDMelissaStevens,MBA
COVER
InpartnershipwiththeAmericanSocietyforMicrobiology(ASM),thePhilanthropyAdvisoryServicecreatedthereportcoverwithsubmissionsbyASMmemberstothe2015and2016AgarArtContests.Allsubmissionsarelivingorganismsplatedonagar—agrowthsurfaceformicroorganisms—andspeaktothecreativityoftheacademicresearchfield.ASMlaunchedAgarArtasapublicoutreachprogramtopromotetheworkoftheirscientificmembers,humanizescientists,andhighlighttheroleofmicrobiologyinourlives.
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ACKNOWLEDGEMENTSANDCONTRIBUTORS
Wegraciouslythankthenonprofit,foundation,andphilanthropicleaderswhokindlysharedtheirtime,experience,andexpertisetohelptocompletethislandscapeanalysisofphilanthropicfundingofscientificacademicresearch.Thecontributors’storiesofchallenges,opportunities,andsuccessesguidedourwritingandwillhopefullyinformtheworkofcurrentandfuturephilanthropistsinthisspace.ThisreportwassupportedbytheApexFoundation’sLGMD2iResearchFund(seeAbout).
GinaAgiostratidou,PhDProgramDirector,T1DTheLeonaM.andHarryB.HelmsleyCharitableTrustElizabethCheung,MPPSeniorProgramOfficer,DomesticProgramsConradN.HiltonFoundationGeneralPeterChiarelli(Ret.)ChiefExecutiveOfficerOneMindLouisJ.DeGennaro,PhDPresidentandChiefExecutiveOfficerTheLeukemia&LymphomaSocietySandyFinucaneSeniorAdvisorEpilepsyFoundationRachelFlaxExecutiveDirectorWeissFamilyFoundationMaryroseFranko,PhDExecutiveDirectorHealthResourcesAllianceSimoneFriedmanHeadofPhilanthropyandImpactInvestingEmanuelJ.FriedmanPhilanthropiesKathyGiustiFounderandExecutiveChairwomanMultipleMyelomaResearchFoundation
MeredithHauptDirector,ResearchPartnershipsTheMichaelJ.FoxFoundationJayEttaHeckerExecutiveDirectorWishesforElliotKathyHudson,PhDDeputyDirectorforScience,Outreach,andPolicyNationalInstitutesofHealthBetsyMyers,PhDProgramDirectorforMedicalResearchDorisDukeCharitableFoundationPlaviJainMittal,PhDPresidentandChiefExecutiveOfficerJainFoundationRebeccaObermanExecutiveDirectorML4FoundationLouiseM.Perkins,PhDChiefScientificOfficerMelanomaResearchAllianceKathyRussellConsultantJoshSommerExecutiveDirectorChordomaFoundation
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TABLEOFCONTENTS
AUTHORS.............................................................................................................................................2
ACKNOWLEDGEMENTSANDCONTRIBUTORS.......................................................................................3
STANDOUTEXAMPLESOFSCIENTIFICPHILANTHROPY..........................................................................5
ABOUT.................................................................................................................................................6
FOREWORD..........................................................................................................................................7
EXECUTIVESUMMARY..........................................................................................................................9
1.WHATAREMYPHILANTHROPICGOALS?........................................................................................11
2.WHATISTHECURRENTSTATEOFTHERESEARCHANDEXISTINGSUPPORTERSOFRESEARCH?.......14NONPROFITSANDFOUNDATIONS...................................................................................................................14GOVERNMENT............................................................................................................................................16SUBSCRIPTION-BASEDRESOURCES.................................................................................................................17
3.GIVENTHESTATEOFRESEARCH,WHATARETHEMECHANISMSTOACHIEVEMYGOALS?..............18GIFTSVERSUSSPONSOREDRESEARCHAWARDS................................................................................................18GRANTMECHANISMS..................................................................................................................................19
4.HOWDOIFINDRESEARCHPROPOSALS?........................................................................................22WRITINGANRFP........................................................................................................................................22ADVERTISINGYOURFUNDINGOPPORTUNITY...................................................................................................24
5.HOWDOIJUDGETHEMERITANDPOTENTIALOFAPOTENTIALPROPOSAL?..................................25ENGAGINGEXPERTSINTHEFIELD...................................................................................................................26WHATTOCONSIDERINARESEARCHPROPOSAL................................................................................................27
6.HOWDOIWRITEARESEARCHGRANTAGREEMENT?.....................................................................29PRINCIPLESFOREFFECTIVECOMMUNICATION..................................................................................................29KEYELEMENTSOFINCLUSIONINAGRANTAGREEMENT.....................................................................................30OTHERPROVISIONSTOCONSIDER..................................................................................................................31
7.HOWDOIMONITORARESEARCHAWARD?...................................................................................34GRANTMONITORINGANDPROGRESSREPORTS................................................................................................34FINALGRANTREPORT..................................................................................................................................36
8.HOWDOIMEASURESUCCESS?......................................................................................................37MEASURINGTHETANGIBLEIMPACTOFARESEARCHPROJECT..............................................................................38MEASURINGTHESCIENTIFICMERITOFARESEARCHPROJECT...............................................................................38MEASURINGTHEIMPACTFORYOURFOUNDATION............................................................................................39
CONCLUSION......................................................................................................................................40
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STANDOUTEXAMPLESOFSCIENTIFICPHILANTHROPY
1. ChordomaFoundation:TargetingaCrucialUnmetScientificNeed Page10
2. ConradN.HiltonFoundation:ExpandingtheFieldofMultipleSclerosisResearch Page13
3. EpilepsyFoundation(EF):De-RiskingtheClinicalPipeline Page14
4. TheKennethRaininFoundation:SupportingInnovative,Proof-of-ConceptResearch Page17
5. DorisDukeCharitableFoundation(DDCF):DevelopingtheClinicalWorkforcethroughMentorship Page18
6. BladderCancerAdvocacyNetwork(BCAN):ConveningLeaderstoDefineStrategicPriorities Page19
7. MelanomaResearchAlliance(MRA):FundingCollaborativeResearch Page21
8. TheJainFoundation:DevelopingtheIn-houseExpertisetoAdvancePhilanthropicScientificResearch Page23
9. WishesforElliot(WFE):LeveragingStrategicPartnerships Page24
10. MichaelJ.FoxFoundation(MJFF):De-RiskingInnovation Page35
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ABOUT
AbouttheMilkenInstitute
TheMilkenInstituteisanonprofit,nonpartisanthinktankdeterminedtoincreaseglobalprosperitybyadvancingcollaborativesolutionsthatwidenaccesstocapital,createjobs,andimprovehealth.Wedothisthroughindependent,data-drivenresearch,action-orientedmeetings,andmeaningfulpolicyinitiatives.
AboutFasterCures
FasterCuresisaDC-basedcenteroftheMilkenInstitutedrivenbyasingulargoal—tosavelivesbyacceleratingandimprovingthemedicalresearchsystem.Inworkingtowardthisgoal,FasterCuresfocusesoncuttingthroughtheroadblocksthatslowmedicalprogressbyspurringcross-sectorcollaboration,cultivatingacultureofinnovation,andengagingpatientsaspartners.FasterCuresworksacrosssectorsanddiseasestoacceleratetheprocessthroughwhichgreatadvancesinscienceandtechnologyaretranslatedintomeaningfulmedicalsolutionsforpatients.Ourprogramsidentifywhatworksandwhatdoesnotworkacrosstheresearchecosystemandsharethatknowledgesothateverysector—andeverypatient—canbenefit.
AbouttheCenterforStrategicPhilanthropy
TheMilkenInstituteCenterforStrategicPhilanthropydesignssmartgivingstrategiestoacceleratephilanthropicgoalsandprogress.Itisfocusedonmaximizingthereturnonphilanthropicinvestmentbyensuringthatinnovationusedtoaddressonesocialissueistranslatedtoanother,bestpracticesandmetricsguidenewandexistinggivingprograms,andresourcesareinvestedtooptimizeoutcomes.
AstheflagshipprogramoftheMilkenInstitute’sCenterforStrategicPhilanthropy,thePhilanthropyAdvisoryService(PAS)counselsphilanthropists,familyoffices,wealthadvisors,andfoundationsseekingtomaketransformativephilanthropicinvestments.Expertadvisoryboards,in-depthduediligence,andanobjectiveframeworkforevaluationshapesouranalysis.PASworksinpartnershipwithFasterCurestoprovidecomprehensive,digestibleinformationthathelpsphilanthropistsevaluateresearcheffortsandfundingopportunitiesinvariousdiseaseareas.
AbouttheApexFoundation’sLGMD2iResearchFund
ThemissionofApexFoundation’sLGMD2iResearchFundistofindacureforLimbGirdleMuscularDystrophy2I(LGMD2I)andtoenhancethepatients’qualityoflife.TheResearchFundaccomplishesitsmissionbybuildingacomprehensiveviewoftheentireLGMD2Iresearchlandscape,advocatingforapplicationofnewtechnologiestothefieldofLGMD2Iresearch,financiallysupportingthemostpromisingresearch,andbringingalevelofcollaborationandmanagementtothescientificprocess.
Ourstrategyreliesonthesixcomplementaryprograms:(1)Supportingmedicalresearch,(2)Buildingsolidrelationshipswithscientists/clinicians,(3)Connectingpatients,scientists,anddrugdevelopers,(4)Facilitatingpatientidentification,(5)Increasingpatientinputintotherapydevelopment,and(6)RaisingawarenessofLGMD2I.Weachieveourstrategybyconcentratingonfourobjectives:ClinicalTrialReadiness,Disease-modifyingandCurativeSolutions,Quality-of-LifeImprovement,andPatientsMolecularDatarelatedtoDiseasePresentation.
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FOREWORD
ApexFoundation,thefamilyfoundationforBruceR.McCaw,hasbeenpleasedtoworkwiththeMilkenInstituteCenterforStrategicPhilanthropyandFasterCuresincreatingthisguide.Wearegratefultoallwhocontributedtheirinsightsandwisdom.Hopefully,itisausefulreadforanyoneconsideringinvestinginresearch.Thegoalofproducingausefulguideforprospectivephilanthropistswasdrivenbyourdesiretosharewhatwe’velearnedfrom20yearsofexperienceinthefield.We’velearnedalotthroughthecourseoffundingvariousacademicandmedicalresearchinitiatives,andthroughtrialanderrorofgrantingmanymillionsofdollarstoresearchprojects.Aguideofthissortwouldhaveserveduswellaswesetourcourse,andinconsideringquestionsthatcameupalongtheway.
Amajorfocusofourcurrentworkisonidentifyingnewapproachestodiagnose,treat,andcurelimbgirdlemusculardystrophyviatranslationalresearch.Atthisstageofresearch,newunderstandingsofdiseasemechanismsgainedinthelaboratoryareconvertedintothedevelopmentofnewmethodsfordiagnosisandtherapy.
Aswethinkaboutinnovationandleverage,wearealwaysseekingwaystobemorestrategicbyfosteringgreatercollaborationandtrustamongresearchersandinstitutions,andacrossdisciplinesandsectorsbyapplyingleadershipandmanagementtothesciencethatcanhelpdriveprogress.Giventhechangingstakeholderlandscapeandlesspredictablefundingclimateofourday,thereisincreasingneedforsmarterphilanthropyinR&D.Webelievethisprimerpavesthewayforfundersandtheresearchcommunitytoaccomplishtheirrespectivegoalsfasterandmoreeffectively.
Basedonourownexperience,ouradviceforfundersandexpectationsforresearchersarethefollowing:
AdviceforFunders
• Beclearaboutwhatyouwanttoaccomplish.Putitinwritinginyourgrantagreement,butbeflexible.Westructurethegranttoenablechangesbasedonemergingdataduringthegrantperiod.
• Tiegrantpaymentstoprojectmilestones.Wehavefoundthishelpstokeeptheresearchfocusedonobjectivesandtomaintainaccountability.
• Askyourselfifyouareusingyourfinancialresourcesinthebestwaytoseeresults.Ifwearenotseeingstrongresults,goodorbad,wearepreparedtohelptroubleshootproblemsorpulltheplug.
• Promotecollaborationandteardownsilosbetweengrantees.Wedothisbyrewardinginstitutionalbehaviorsthatfacilitateteamscienceandreal-timedatasharing.
• Consideryouroptionsforhavinginfluenceoverintellectualpropertydevelopedwithyourgrantfunding.Wehavefoundtherearepositionsthatfoundationscantaketohelppromotethedisseminationofknowledgetobenefitsocietyandadvancementofresearchtowardscommercialization.
• Lookforopportunitiestoleverageyourinvestmentforallstakeholders.Ourfundingalonewillnotdevelopanewtherapy,butotherstakeholders—patientsandfamilies,healthcarepayers,regulators,fundersandpatientadvocacyorganizations,biotech,pharma,medicalresearchers,andthemedia—canuseandbuildonthefindingsfromourinvestment.
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• Considerengaginginadvocacyefforts.We’veseenthatpolicysolutionsatthelocal,state,national,andgloballevelscancomplementourfundingprogramsandhelptoadvanceourmission.
AdviceforResearchers
• Focusonnotjustthe“what”butonthe“how”tointegrateyourfindingsintoimprovingpatientcareandadvancingcures.Webelieveallstakeholdershavearesponsibilitytoensurethatapplicableresearchdoesnotendupontheshelfbutisputtoproductiveuse.
• Knowyouraudiencewhencommunicatingresults.Wefindthatwhenoutcomesarecommunicatedineasy-to-understandlanguage,we,aswellasallotherstakeholders,canbebetterpartners,advocates,andsupporters.
• Treatfundersasfullpartners,notjustpatrons.We’vefoundittremendouslyproductivetoworkcollaborativelywithourgranteesandforthemtosharealldata/results,goodorbad,inrealtime,sothatwecanbehelpfulinovercomingobstaclesormovingpromisingresearchtothenextstep.Weappreciatethetime,attention,andrespectourgranteesshowus.Itmakesuswanttobeevenmorecommittedcollaborators.
• Participateineffortsthatpromoteopenscience.Webelievethatdemocratizingdataandsciencecanyieldgreatermedicalprogressforusall.Wehopeyouwillbepartofthemovementtoo.
Whenphilanthropy,science,business,program,andadvocacygroupspresentaunitedfrontandspeakwithacollectivevoice,wemakethemostprogressonpolicyandprogramchangesthatwillleadtothepreventions,treatments,andcuresforalldiseases.Witheachofyourvoicesandleadership,policychanges,andtheallocationofscarceresources,wecan,together,accomplishwhatsciencetellsusworksandistherightthingtodo.CraigStewartPresident&TrusteeApex/BruceR.McCawFamilyFoundation
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EXECUTIVESUMMARY
Aphilanthropist’sdecisiontoinvestinscientificresearchanddevelopmentmaybedrivenbyanarrayoffactors.Theirgivingmaybemotivatedbypersonalexperiencewithaspecificdisease,thedesiretohelpimprovehealthandsavelives,ortheaspirationtoimprovethestatusquo.Regardlessofone’smotivations,strategicphilanthropicinvestmentsinmedicalresearchrequireacarefulconsiderationofthephilanthropist’sprioritiesandanunderstandingofthecurrentstateofresearchtoamplifytheimpactoftheirgiving.
WithsupportfromtheApexFoundation’sLGMD2iResearchFund,theMilkenInstitutePhilanthropyAdvisoryServiceconductedalandscapeanalysisofcurrentandbestpracticesforfundingscientificresearch,whichwasinformedbyinterviewswithfoundationleaders,philanthropyadvisors,andgovernmentstakeholders.InthisGivingSmarterGuideforFundingScientificResearch,weprovideapathwayfordefiningyourphilanthropicpriorities,aligningthemwiththeunmetneedsofaresearchfieldandtheexistingfundingecosystem,andeffectivelydeployingphilanthropiccapitaltouniversitiesandresearchinstitutions.
Thereportisstructuredtoprovidepointsofentryintothepathwayoffundingscientificresearchprimarilyconductedinanacademicormedicalsetting.Writtenforindividualphilanthropistsandfoundationswhomaybenewtoscientificresearch,thisreportwillwalkyouthroughtheprocesswithaseriesofquestionsandkeytakeaways.
1. Whataremyphilanthropicgoals?
• Understandthestagesofscientificresearch(frombasicsciencetoclinicaltrials)andhowtheyalignwithyourgoals.
• Createawell-definedvision,mission,strategy,andobjectivestoguideyourphilanthropy,andalsoclearlyandconsistentlycommunicateyourintereststothescientificresearchcommunityandrelevantstakeholders.
2. Whatisthecurrentstateoftheresearchandwhoareexistingsupportersofresearch?
• Identifypotentialresearchpartners–fromacademics,nonprofits,andindustry–inthediseaseresearchecosystemtohelpdeterminetheresearchgapsyourphilanthropycanaddress.
3. Giventhestateofresearch,whataretheawardmechanismsIcanusetoachievemygoals?
• Explorewhichmechanismisrightforyou-auniversity-directedgiftorasponsoredresearchaward.
• Tailortheawardtofocusonthespecificresearchgaps,suchasscientificunknowns,segmentsoftheresearchworkforce,orresearchinfrastructuretoenhancethecapabilitiesoftheentireresearchecosystem.
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4. HowdoIfindresearchproposals?
• CraftaRequestforProposals(RFP)tocommunicateyourstrategicprioritiestothewiderresearchcommunityandhighlighttheresearchquestionsandobjectivesyouwishtoaddress.
• WidelydisseminateyourRFPtomaximizethenumberofproposalsaddressingyourspecificresearchquestion.
5. HowdoIjudgethemeritandpotentialofasubmittedproposal?
• Considerboththequalityandmeritofproposals,aswellastheabilityoftheresearchertosuccessfullycompletethework.
• Engagediseaseresearchexpertsaspartofthereviewandselectionprocess.
6. HowdoIwritearesearchgrantagreement?
• Uponidentifyingtheproposalyouwishtofund,craftagrantagreement,whichisthelegaldocumentthatoutlinestheterms,conditions,andgoalsofthegrant.
• Effectivecommunicationwiththegranteeandresearchinstitutioniscriticaltoadvancingyourfoundation’sstatedmissionandstrategy.
7. HowdoImonitoraresearchaward?
• Progressandfinalgrantreportsarekeycheckpointsofthefundingprocess,andshouldcapturetheroadblocksandproposedsolutionsoftheawardedproject.
8. HowdoImeasuresuccess?
• Measuringthesuccessofawardedgrantsinvolvebothtangibleandintangibleimpactmetrics.
o Tangiblemetricsincludefruitfulcollaborationsandfollow-onfunding,aswellasresearchinfrastructuredevelopmentandworkforcedirectlysupportedbytheaward.
o Intangiblemetricsincludedevelopmentofnewandinnovativethinkingforthefield,andwhethertheworkdemonstratesthekindofscientificambassadorshipyourfoundationwishestoproject.
Throughoutthereport,wealsohighlightstandoutexamplesofphilanthropicsupportforscientificresearch,rangingfromafocusonnovelresearchwithoutexistingdatabytheKennethRaininFoundation,workforcedevelopmentbytheDorisDukeCharitableFoundation,tothecollaborativeprojectreviewandmodificationmodelemployedbytheJainFoundation(seepage5forcompletelistofcasestudies).
Scientificresearchisanobleendeavor—onethatmanyadvocateforandprofessionallypursue.However,difficultiesremaininhowtoidentifythebestphilanthropicprocessandopportunitiestosupportresearch.Ourgoalwiththisreportistoidentifycommonapproachesandbestpracticestoaddressthepotentialpitfallsandchallengesthatcomewithsupportingscientificresearchinacademicinstitutions.
However,aswithallthingsinscience,youcannotknowwhatwillorwillnotworkuntilyouperformtheexperiment.
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1.WHATAREMYPHILANTHROPICGOALS?KEYTAKEAWAYS
• Understandthestagesofscientificresearch(frombasicsciencetoclinicaltrials)andhowtheyalignwithyourgoals.
• Createawell-definedvision,mission,strategy,andobjectivestoguideyourphilanthropy,andalsoclearlyandconsistentlycommunicateyourintereststothescientificresearchcommunityandrelevantstakeholders.
Thereareviableandeffectivetreatmentsforonly500fortheapproximately10,000knowndiseases.Thus,therearemanyopportunitiesformedicalphilanthropytoadvanceprogress—fromresearchingcausesofCrohn’sdiseasetodevelopingtreatmentsforAlzheimer’sdisease—withnoone-size-fits-allapproach.Giventhearrayofoptions,itcanbedifficulttodecidewhichavenuestopursue.Theinitialstepistodefineyourfundingpriorities,whichwillrequireanarticulationofyourphilanthropicgoals,followedbyanunderstandingoftheresearchprocess,therisksinvolved,andultimatelyinformedthecurrentstateofthescientificfield.
First,youshouldidentifyyourphilanthropicgoalsandaskwhatistheambitiouschangeyouwanttoseeintheworld?Doyouwanttocurearareneurologicaldisease?Doyouwanttodevelopnoveldiagnostictoolsforbloodcancers?Ordoyouwanttobuildaresearchfieldforanunderserveddisease?Articulatingyourgoalsservesasastrongfoundationtostrategicallydeployyourphilanthropy.
Next,youshouldunderstandtheresearchprocessandidentifytheunmetneedsthatareimpedingprogress.Simplystated,themedicalresearchpipelinehasthreestages:basicresearch,translationalresearch,andclinicalresearch(seeright).Philanthropycansupportresearchthroughoutthepipelinebyadvancingthescienceand/orimprovingthesystem.
• Advancingthesciencecentersonaddressingaspecificresearchquestion,suchasunderstandingthebiologicalunderpinningsofadiseaseortestingtheclinicalefficacyofanewdrug.
• Improvingthesystemmeanscreatingtools,resources,orinfrastructurethathelpscientistsanswerresearchquestions.Examplesincludebuildingpatientregistriesandsamplebiorepositoriesforresearch,ordevelopingtheresearchworkforce.
StagesofScientificResearch
Basicresearchaimstoadvanceknowledge,withoutaspecificallyenvisagedorimmediatelypracticalapplication,andservesasthefoundationoftranslationalandclinicalresearch.Basicresearchprojectsfocusonimprovingthescientifictheoriesthatexplainorinformwhatmaycause,drive,andimpactadisease.
Translationalresearch,oftenreferredtoasbench-to-bedsideresearch,servesasthebridgebetweenbasicandclinicalresearch.Translationalresearchprojectsapplyaniterativeandmultidirectionalprocessto(a)transformbasicresearchdiscoveriesintonewdrugs,devices,andinterventionsand(b)utilizefindingsfromtheclinictoinformnewresearchtorefineorexpandaninnovation.
Clinicalresearchaddressesdiseaseprevention,treatment,diagnosis,andrelieffromdisease-relatedsymptomsinhumansubjects.Clinicalresearchprojectsfocusonthesafetyandeffectivenessofmedications,devices,diagnostics,andtreatmentregimensintendedforhumanuse.
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Regardlessofwhichresearchstageyouchoosetosupport,scientificprogressisoftenuncertainandriddledwithrisk.However,oneofthekeyadvantagesofascientificphilanthropyistheabilitytoassumeahigherriskprofilethanfunderssuchastheNIH.Thus,itisimportanttounderstandyourrisktolerancesandhowtotoleratetheriskotherfundersmaynot.
Anappetiteforhigherriskandhighersocialrewardshoulddrivephilanthropiststoconsidernontraditionalandinnovativeapproaches,whileaimingtofillgapsinthefundingandsciencelandscapethathavebeenavoidedbyindustry,governmentagencies,andothernonprofits.
Finally,alandscapeassessmentoftheresearchfieldwillhelpidentifytheunmetneedsthatcanbeaddressedtoadvancedtowardsyourgoals.Methodsforconductingtheduediligencenecessarytodeterminethecurrentfundingandscientificlandscapewillbeaddressedinthenextsection:“WhatIstheCurrentStateoftheResearchandExistingSupportsofResearch?”
ChordomaFoundation:TargetingaCrucialUnmetScientificNeed
MissionandStrategy:
TheChordomaFoundationisworkingtoacceleratethesearchforacurebyinitiatingandfundinghigh-impactresearch,facilitatinginformationexchangeandcollaborationamongresearchers,andprovidingscientificresourcestostudychordoma,ararecanceroustumorthatcanoccuralongtheboneandsofttissueanywherealongthespine.
Program:
TheCellLinePrize—Celllinesarecriticalforunderstandingchordomaanddevelopingnewtreatments.Until2010,onlyonevalidchordomacelllinehadbeencreated,whichpreventedresearchersfromconfirmingtheirfindingsandmanyresearchersfromundertakingchordomaresearchprojectsaltogether.Thus,theFoundation’sScientificAdvisoryBoardandattendeesofitsresearchworkshopsidentifieddevelopmentofnewchordomacelllinesasoneofthehighestprioritiesforadvancingchordomaresearch.
Inresponsetothisclearmessage,theFoundationsetagoaltodevelop10validatedchordomacelllinesandmakethemeasilyaccessibletotheresearchcommunity.However,howtodevelopthesecelllinesandwhotofundwasnotobvious;manyattemptshadbeenmadebytop-notchlabsinthepasttolittleavail.Neededweredifferentapproaches,moretrialanderror,andperhapssomeluck.Ratherthanfocuslimitedresourcesonasmallnumberoflabs,theFoundationencouragedasmanylabsaspossibletobringtheireffortsanduniqueapproachestobearontheproblembyofferinga$10,000prizeforeachvalidchordomacelllinethatissubmittedtotheChordomaFoundationCellLineRepository.
Todate,theCellLinePrizehasledtoninevalidatedchordomacelllines,allofwhichareavailabletoresearchersinthechordomascientificcommunity.
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Onceyouidentifyyourfundingpriorities,yourfoundationshoulddefineavision,mission,andstrategicplantodelineatelong-termgoalsandtheshort-termobjectivesemployedtoachievethem.Doingsowillhelpyourfoundationmaintainfocusandaninternalsenseofpurpose,whilefacilitatingcommunicationandengagementwithexternalstakeholdersthroughoutthefundingprocess.
• Yourfoundation’svisionistheendgoal—suchasaworldfreeofthedisease,oraworldwherethediseaseiscurable,chronic,and/ormanageable.
• Themissionsupportsthevisionandshouldfocusontheunmetneedsandbarriersthatyourfoundationseekstoaddress.Themissionshouldbebroadenoughtoaccommodateadjustmentsinstrategyovertime,butspecificenoughtoclearlydefineandcommunicateyourworktoexternalstakeholders.
• Strategicprioritiesdefinethetoolsthatyourfoundationwillutilizeandtheanglesfromwhichyourfoundationwillchipawayatthelargerproblem.Inotherwords,yourstrategydefinesthestepsneededtoachieveyourmission.
• Objectivessetspecificgoalsthathelpmaintainfocusandmeasuretheefficacyofyourstrategythroughindividualprojectsorinitiatives.Yourfoundation’svisionandmissionwillnotbeachievedovernight,asscientificresearchprogressisnonlinearandfraughtwithrisk.Strategicprioritiesandobjectivessetashort-term,nimbleagendathatcanrespondtointernalfactorssuchasyourfoundation’scapacityandavailableresourcesorexternalfactorssuchastheactionsofotherfundersandtheevolutionofthecurrentstateofthescience.
FORFURTHERREADING:
GettingStarted:AMedicalResearchandDevelopmentPrimer
HonestBrokersforCures:HowVenturePhilanthropyGroupsareChangingBiomedicalResearch
CrossingOvertheValleyofDeath:TranslationalResearch
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2.WHATISTHECURRENTSTATEOFTHERESEARCHANDEXISTINGSUPPORTERSOFRESEARCH?KEYTAKEAWAY
• Identifypotentialresearchpartners—fromacademics,nonprofits,andindustry—inthediseaseresearchecosystemtohelpdeterminetheresearchgapsyourphilanthropycanaddress.
Theidealnextstepinfocusingyourphilanthropyisbetterunderstandingwhoisplayinginthesamesandbox.Thefollowingsectionenumeratesresourcesthatcanexpandyourviewofthediseaseresearchecosystem,fromnonprofitsandfoundations,governmentresources,andsubscription-basedplatforms.
NONPROFITSANDFOUNDATIONS
CharityNavigatoristhenation’slargestandmostutilizedevaluatorofcharities.Itsanalystsexaminethousandsofnonprofitfinancialdocumentstodevelopanumbers-basedratingsystemtoassessmorethan8,000ofAmerica’sbest-knownandsomelesserknown,butworthy,charities.
FoundationDirectoryOnlineisafee-basedserviceoftheFoundationCenterthatmaintainsadatabaseofallU.S.privatefoundationsandassociatedgrantopportunities.
GeneticAllianceisaleadingnonprofithealthadvocacyorganizationthatincludesanetworkof1,200disease-specificadvocacyorganizations,aswellasthousandsofuniversities,privatecompanies,governmentagencies,andpublicpolicyorganizations.GeneticAlliancemanagestheGeneticAllianceRegistryandBiobankthatprovideavarietyofresourcesandpublicationsaboutregistriesandbiobanksdevelopedspecificallymembersandotherdiseaseadvocacyorganizations.
GuideStaristhelargestsourceofinformationonnonprofitorganizations.Ausercanfindorganizationswhosetitlesincludethenameofyourdiseasespace.Alongwithmissionandcontactinformation,GuideStarprovidesrecentIRSdocuments(990forms)thatdetailorganizationalrevenue,assets,expenses,andgrantmaking.
HealthResearchAlliance(HRA)isamembershiporganizationwithrepresentationfrommorethan70nongovernmentalfundersofhealthresearch.HRAmembersroutinelysharebestpracticesandideasabouthowtofacilitateoperationalprocessesofgrant-making.Itssemiannualmembermeetingsprovidememberswiththeopportunitydiscussthetopicsofinteresttothegrant-makingcommunity.Thelistofmemberorganizationsmightgiveinsightintoothernonprofitfundersinyourdiseasespace.
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NationalHealthCouncil(NHC)bringstogetherdiversestakeholderswithinthehealthcommunitytoworkforhealthcarethatmeetsthepersonalneedsandgoalsofpeoplewithchronicdiseasesanddisabilities.TheNHC'scoremembershipincludesthenation’sleadingpatientadvocacyorganizations,whomaltogetherdeveloppublicpolicypositionswiththegoalofbringingaboutahealthcaresystemcommittedtoputtingpatientsfirst.
NationalOrganizationforRareDiseases(NORD)providesnetworkingandresearchservicesforpatientsandtheirfamilies,rarediseasepatientorganizations,medicalprofessionals,andthoseseekingtodevelopnewdiagnosticsandtreatments.
TheResearchAccelerationandInnovationNetwork(TRAIN)isaFasterCuresprogramthatconvenesdozensofforward-thinkingfoundationstolearnfromeachotherandsharetheirnovelsolutionswiththerestofthemedicalresearchsystem.ThelistofparticipatingTRAINorganizationsmightgiveinsightintoothernonprofitfundersinyourdiseasespace.
ConradN.HiltonFoundation:ExpandingtheFieldofMultipleSclerosisResearch
Mission:
ThemissionoftheConradN.HiltonFoundationistoprovidefundstononprofitorganizationsworkingtoimprovethelivesofdisadvantagedandvulnerablepeoplethroughouttheworld.Withinthisscopeofwork,theFoundationprioritizesscientificsupportforresearchersandclinicianshopingtodiscoverthecauseandacureformultiplesclerosis(MS),impactitspreventionandtreatment,toultimatelyimprovethequalityoflifeofpatientswhosufferfromitsdebilitatingeffects.
Strategy:
TheFoundationtargetsitsscientificfundingportfoliotowardtwoprimaryaims:supportandenhancementofexistingfundingeffortsinthefield,andidentificationofinnovativeresearchthatisnotsupportedbycurrentfundingprograms.ThroughtheMarilynHiltonAwardforInnovationinMSResearch,theFoundationleveragesitsexistingrelationshipwithclinicalcarenetworkstoidentifynewresearchers,withthegoalofdirectingfundingtowardinnovativeandriskyresearchprojectswiththepotentialtocreatesignificantchange.
Throughthiseffort,theFoundationaimstoavoidduplicationofexistingresearch,whilealsoidentifyingnew,excitingprojectsthatmightotherwisegounfunded.
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GOVERNMENT
NIHRePORTER—TheNationalInstitutesofHealth(NIH)istheprimaryagencyoftheU.S.governmentresponsibleforbiomedicalandhealth-relatedresearch,aswellasthelargestpublicfunderofbiomedicalresearchintheworld,withannualinvestmentsofmorethan$32billionayear.NIHRePORTERisatooltoassessexistingresearchawardsusingmultiplefilterssuchasresearchfield,university,projectparameters,andprincipalinvestigators(theprimaryresearcherontheaward).Thetoolcanhelpyouunderstandtheongoingresearcheffortsinthespace,aswellastheresearchleadersandprincipalinvestigatorswhomightserveasidealpointsofcontact.AlthoughNIHRePORTERcanhelptoidentifyleadingresearchandexpertsinthefield,itshouldnotserveastheonlytooltoassesstheresearchlandscape.Inthecontextofaconstrainedgovernmentfundingenvironment,establishedinvestigatorsarefavoredtoreceiveNIHfundingbecauseoftheirtrackrecordsorabilitytogeneraterelevantpre-awarddata.YoungerinvestigatorsmaybringanovelperspectivetoresearchquestionsbutcanbedisadvantagedbytheNIHprocessduetotheirlackofpre-existingdata.
Clinicaltrials.gov—Understandingadisease’sclinicalpipelineisavitalsteptoassessingthescientificlandscapeoftheresearch.Asaregistryandresultsdatabaseofpubliclyandprivatelysupportedclinicalstudiesofhumanparticipantsconductedaroundtheworld,maintainedbytheNationalLibraryofMedicine,Clinicaltrials.govcangreatlyaidthisprocess.Ifyourdiseaseareahaspromisingtherapiesintheclinicalpipelinethatneedadditionalsupport,fundingclinicalstudiesmightbeaworthyinvestmentwithhigh-impactpotential.Understandingthestateoftheclinicalresearchcanalsoinformtranslationalresearchopportunitiesbydelineatingthegapsbetweenthebasicscienceandclinicalapplications.
AlthoughClinicaltrials.govisatoolthatcapturestheexistingeffortsinthespace,itdoesnotfacilitatesupportofspecifictrials,asindustry,suchasbiotechsandpharmaceuticalcompanies,playaconsiderableroleinfundingclinicaltrialsofpotentialdrugsandmedicines.
EpilepsyFoundation(EF):De-RiskingtheClinicalPipeline
MissionandStrategy:
EF’smissionistoleadthefighttoovercomethechallengesoflivingwithepilepsyandtoacceleratetherapiestostopseizures,findcures,andsavelives.Inpursuitofthismission,EFworkstoovercomethebarrierstosuccessfultranslationofpromisingnewresearchinsights.
Program:
ThroughtheEpilepsyTherapyProject,EFanalysestheclinicalpipelineandprovidesfinancialsupportandscientificandbusinessdirectiontopromisingnewtherapiesthathaveprogressedbeyondthebasicsciencediscoverystage.Preferenceisgiventoproposalsthatalreadyhaveacommercialpartnerengagedtoassistwithdevelopmentand/orhavecommittedormatchedfundingfromathird-partysource.
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SUBSCRIPTION-BASEDRESOURCES
UberResearch,DimensionsforFunders—Thisfee-basedplatformprovidesphilanthropistswithacomprehensiveviewofthepastandongoingeffortsinspecificresearchfields.Drawingfromaglobalawarddatabasecovering200fundersandmorethan$900billioninhistoricalawards,userscaninstantlycompareinternalfundingapplicationsandtheirphilanthropicinterestsagainsttheglobalfundinglandscape.
OnlinePartnershiptoAccelerateResearch(OnPAR)—Researchfunderscanutilizethisfee-basedplatformtosupportproposalsthatwerereviewedbutnotfundedbytheNIH.NIHhashistoricallysupportedaround30%ofsubmissions;however,inthisconstrainedresearchfundingenvironment,thatratehasdroppedtolessthan20%ofsubmissions.Thus,manyworthyresearchproposalsgounfunded.OnPARaimstoconnectthesehigh-scoring,unfundedproposalswithpotentialfoundation,philanthropic,andindustryfunders,servingasthematchmakerbetweenfunderandpotentialgrantee.
BioCenturyOnlineIntelligence(BCIQ)—Thisfee-basedserviceprovidesinformationandanalysesofvariouscomponentswithintheclinicaldevelopmentspace.BCIQallowstheusertoanalyzetherapeuticproductpipelines,publicandprivatefinancingactivity,andtherelevantbiotechandindustryplayersintheirdesiredresearchspace.Understandingthedynamicandevolvinglandscapethatshapesclinicaldevelopmentempowersthefundertomakemorestrategicgivingdecisions.
FORFURTHERREADING:
ConsortiumSandbox:BuildingandSharingResources
Consortia-pedia:Aprojecttobetterunderstandthebreadthandscopeofapproachesthatawiderangeofconsortiahaveadoptedtobringtogethernon-traditionalpartnerswithasharedR&Dgoal.
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3.GIVENTHESTATEOFRESEARCH,WHATARETHEMECHANISMSTOACHIEVEMYGOALS?KEYTAKEAWAYS
• Explorewhichmechanismisrightforyou-auniversity-directedgiftorasponsoredresearchaward.
• Tailortheawardtofocusonthespecificresearchgaps,suchasscientificunknowns,segmentsoftheresearchworkforce,orresearchinfrastructuretoenhancethecapabilitiesoftheentireresearchecosystem.
Therearemultiplefactorstoconsiderwhendeterminingthefundingmechanismsthatalignwithyourphilanthropicgoals.ThefollowingsectionisinformedbyasurveyofthecurrentmechanismsandprogramsutilizedbymembersoftheFasterCuresTRAINprogram(seesection2foradescriptionofTRAIN).
GIFTSVERSUSSPONSOREDRESEARCHAWARDS
Aninitialconsiderationishowtoengagewiththeacademicinstitutions,becauseexternallysupporteduniversityresearchisclassifiedaseitheragifttotheuniversityorasponsoredresearchproject.Giftsaredefinedasanyitemofvaluegiventoauniversitybyadonorwhoexpectsnothingofsignificantofvalueinreturn,otherthanrecognitionanddispositionofthegiftasdesired.Sponsoredresearchprojectsinvolveagrant,contract,orcooperativeagreementbetweentheuniversityandthesponsor,alongwithadetailedstatementofworkandacommitmenttoaspecificprojectplan.Bothawardstructuresdifferintheirleveloffinancialaccountabilityandprojectoversight.Thefollowingtableprovidesabriefcomparisonofthetwoawardmechanisms.
Gifts SponsoredResearchAward
Purpose Donorspecifiesanareaofinteresttobeaddressedbythegift
Sponsorspecifieshowthefundsshouldbeused,asoutlinedinthegrantorstatementofwork
Reporting Theuniversityhaslittletonoobligationtoreporttothedonorhowthegiftisused.Requiredreportingislimitedtodetailsofhow,when,andtowhomtofundsweredisbursed
Sponsorrequiresperformanceofspecificdutiessuchasresearchdeliverables,budgetreports,progressreports,andreturnofunusedfunds
Document LetterofDonationorGiftAgreement AwardLetterand/orGrantAgreement
DeadlineandTerms Typically,notimeperiodisassociatedwiththeuseoffunds
Agreementoutlinesaspecifictimeperiodtoconducttheproject
Facilities&AdministrativeCostRates(IndirectCosts)
None Variesbyinstitutionandusuallyapercentageofthetotalawardvalue
University/AcademicInstitutionContact
DevelopmentOfficersandFoundationRelationsOffice
SponsoredProgramsOfficeaswellasResearch/ProgramDirectors
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TheKennethRaininFoundation:SupportingInnovative,Proof-of-ConceptResearch
HealthMission:
TheKennethRaininFoundationsupportscutting-edgeresearchprojectsthatarepotentiallytransformativetodiagnosing,treatingandcuringinflammatoryboweldisease.
Program:
TheInnovatorAwardsprogramprovides$100,000grantsforone-yearresearchprojects,whichbecauseoftheirground-breakingnaturemaynotbesuitableforfundingfrommoretraditionalsources,suchastheNIH.Applicantsarenotrequiredtohavepre-existingdata,andgrantproposalsareweighedagainstthefollowingcriteria:innovation,scientificmerit,strongevidenceofcollaboration,andtheinvestigator’scapabilitytoexecutetheproject.Todate,theFoundationhasawarded36InnovatorAwards,ofwhich27weresuccessfullyvalidatedandreceivedfollow-onfundingthroughtheFoundation’sBreakthroughAwardsmechanism.
GRANTMECHANISMS
Dependingonwhatyouwanttoaccomplishwithyourresearchaward,certaingrantmechanismsmaybemoresuitablethanothers.Forwell-studieddiseases,moreimpactfulawardslieintargetedresearchinitiativesthataddressagapinthefield,suchasdrugdevelopmentorinnovativeapproachestodiseaseresearch.Otherdiseaseareasmaybenefitfromworkforcedevelopment;thus,financialsupportforearly-stageinvestigatorsmaybeabetterfit.Belowareconsiderationsinchoosinggrantmechanismsbasedonyourresearchpriorities.
1) First,yourfoundationshouldfirstconsidertheresearchgapyouwishtoaddress.
GrantMechanism
Purpose RangeofAwardSize(peryear)
RangeofAwardDuration
InnovativeResearchAward
Supportsinnovativeresearchwithminimalexistingdatabutaddressesquestionsbeyondcurrentlyacceptedparadigms
$40,000-$150,000
1-2years
TargetedInitiativeAward
Targetsidentifiedresearchneeds,e.g.,biologicalandgeneticsignalsofdisease(biomarkers),drugdiscoveryanddelivery
$25,000-$600,000
1-3years
BridgeFunding SupportsresearchprojectsthathavebeensubmittedtotheNIHbuthavenotyetreceivedNIHfunding
$25,000-$50,000 1-2years
ResearchToolsAward
Targetsthedevelopmentoftoolstosupportdiseaseresearche.g.animalmodels,imagingtechniques,andtissueculturecelllines
$25,000-$50,000 1-2years
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DorisDukeCharitableFoundation(DDCF):DevelopingtheClinicalWorkforcethroughMentorship
MedicalResearchMission:
ThemissionoftheMedicalResearchProgramistoadvancetheprevention,diagnosis,andtreatmentofhumandiseasebystrengtheningandsupportingclinicalresearch.
StrategyandProgram:
TheClinicalResearchMentorshipprogramprovidespreviouslyfundedDDCFinvestigatorswiththeopportunitytofosterthenextgenerationofcliniciansbymentoringamedicalstudentforoneyear.
Scientificmentoringisapersonal,one-on-onerelationshipbetweenanexperiencedscientistandascientist-in-the-making.TheClinicalResearchMentorshipprogramsupportstheestablishmentofarelationshipbetweenamedicalstudentandatalentedandsuccessfulDDCF-fundedclinicalinvestigatorandrolemodel.Studentswillbecomeinvolvedinaresearchprojectthathasalreadymetthehighstandardsofpeerreview,whileDDCFinvestigatorswillreceivetheopportunitytoteachandtrainthenextgenerationofresearchers.Theirworkwillnotonlyboosttheirmentoringskills,butalsobenefitfromthestudent’senergyandideas.
2) Anotherpotentialconsiderationisthesegment(s)oftheresearchworkforceyouwishtosupport.Withinagivenfundingcycle,yourfoundationcanfundmorethanonetypeofscientist.Thefollowingtabledescribessomecommonpracticesrelatedtoworkforcegrants.
TheconsiderationsdescribedintheMechanismandWorkforcetablesarenotmutuallyexclusiveandcanbemixedandmatchedtoalignwithyourphilanthropicpriorities.
Workforce Definition AwardSize
(peryear)
RangeofAwardDuration
UndergraduateFellowship
Forresearcherscurrentlyenrolledinanaccreditedundergraduateprogram
$2,500-$4,000
<1year
PredoctoralFellowship
Forresearchersenrolledinamaster’sordoctoralprogram
$30,000-$41,000
1-2years
PostdoctoralFellowship
Forresearcherswithagraduatedegree
$35,000-$60,000
1-5years
Early-StageInvestigators
Forprincipalinvestigatorsintheearlystagesoftheircareer
$20,000-$100,000
1-5years
EstablishedInvestigators
Forprincipalinvestigators10yearsormoreposttheirgraduatedegree
$100,000-$150,000
1-5years
TeamScience For>2investigatorsacrossmultipleresearchdisciplines
$100,000-$300,000
1-5years
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3) Anotherpotentialconsiderationforrarediseasesandnewresearchfieldsistosupportgeneralawarenessanddisseminationofresearchfindingsviaconferenceandmeetingattendance.
FORFURTHERREADING:
EntrepreneursforCures:TheCriticalNeedforInnovativeApproachestoDiseaseResearch
ExpandingtheScienceofPatientInput:BuildingSmarterPatientRegistries
AwardType Purpose
OneTimeAwardSize
MeetingorConferenceSupport
Fundsmeetingsorconferencesrelatedtodisease-specificresearch
$5,000-$20,000
TravelAwards Fundsforresearcherstoattendconferencesorfacilitatecollaborations
$1,000-$2,500
BladderCancerAdvocacyNetwork(BCAN):ConveningLeaderstoDefineStrategicPriorities
Mission:
BCANsetstheagendaforbladdercancerbypromotingandfundingcollaborativeandcutting-edgeresearchprogramsandprovidingcriticalpatientsupportandeducationservices.
Strategy:
In2006,BCANstartedtheBladderCancerThinkTank,thefirstscientificconferencesolelyfocusedonbladdercancer.Hostedannually,theeventistheonlyscientificconferencethatconvenesleadingoncologists,urologists,researchers,andpatientstoenhancecollaborationamongthosededicatedtotheprevention,diagnosis,andtreatmentofbladdercancer.
ThemeetinghasfocusedonidentifyingobstaclesandcreatingsolutionsinbladdercancerresearchandhelpstodefineBCAN’sstrategicfundingprioritieswhileadvancingbladdercancerresearch.AkeyoutcomeoftheThinkTankwasthelaunchoftheBladderCancerGenomicsConsortium,whichisacooperativeeffortbetweenBCANandeightmajormedicalcentersrecognizedfortheirexpertiseinbladdercancerresearchandtreatment.
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4.HOWDOIFINDRESEARCHPROPOSALS?KEYTAKEAWAYS
• CraftaRequestforProposals(RFP)tocommunicateyourstrategicprioritiestothewiderresearchcommunityandhighlighttheresearchquestionsandobjectivesyouwishtoaddress.
• WidelydisseminateyourRFPtomaximizethenumberofproposalsaddressingyourspecificresearchquestion.
WRITINGANRFP
Aftersettingyourgoalsandidentifyingthemostappropriategrantmechanisms,thenextstepistosolicitresearchproposals.ThisprocessstartsbywritinganRFP,alsoreferredtoasRequestforApplications(RFA),whichcommunicatesyourstrategicprioritiestothewiderresearchcommunity.Itshouldhighlighttheobjectivesyouwishtoaddressgiventhecurrentstateoftheresearch.RFPscanfollowavarietyofapproachestopredeterminewhichresearchersortypesofprojectswillbefunded,orboth.TheoutlinebelowdelineatesthekeyelementsthatyourfoundationmightincludeinanRFP.
1)StatementofResearchPurpose:AsthemostsignificantsectionoftheRFP,thestatementofpurposeclearlydefinesthegoalsyouseektoadvanceinthecontextofunmetneedsandthelargerresearchlandscape.
Elementsofyourstrategymayinclude:
• Stageofresearch:basic,translational,orclinical.
• Targetedpatientpopulation(suchasgenderoragegroup).
• RiskprofileabovethethresholdfortheNIHorothertraditionalfunders(suchasminimalrequirementofpre-existingdata).
Intendedgoalsmayinclude:
• Innovativeandnewmethodsofresearchanddiscovery.
• Identifiedresearchneeds,suchasbiologicalandgeneticsignalsofdisease(biomarkers),drugdiscoveryanddelivery.
• Bridgefunds,orfundingsupportforNIHsubmittedproposalsthathavenotyetreceivedNIHfunding.
• Increasedawarenessaboutyourdiseasespace(meetingsupportortravelgrants).
ToolsforPhilanthropy:GrantManagementSoftware
Manygrantmanagementplatformscanaidinthedevelopment,receipt,review,andtrackingofawardsthroughouttheirfundinglifecycle.In2016,thenonprofitIdealwarepublishedacomprehensivereviewofcommerciallyavailablegrantmanagementsoftware.The“Consumer’sGuidetoGrantsManagementSystems”categorizesplatformsbasedonfourattributes:lowcostforsimpleneeds,flexiblerelationshipmanagement,comprehensiveonlinedatacollection,andcomprehensiveapplicationreview.
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2)Submissions:Thissectiondescribestheadministrativecomponentsofgrantselectionandimplementationandmayinclude:
• Desiredformat/pagelengthforthegrantproposal.
• Timelineofthereviewprocessandwhenresearchersmightexpectaresponse.
• Expectedtostartandendoffundingforselectedproposals.
• Timelineforreleaseoffundingoverthecourseofthegrant.
• Accessandavailabilityofuniversityresourcestoaccomplishtheproposedwork.
3)Eligibility:Theeligibilitysectiondefinesthetypesofresearchersyourfoundationhopestosupport.Dependingonyourpriorities,youmaylimiteligibilityto,orencourageapplicationsfrom:
• Undergraduateresearchers.
• Trainees.
• Early-stagepostdoctoralresearchers.
• Early-stageorestablishedprincipalinvestigatorsinthebeginningstagesoftheircareer.
• Academicswithindustrypartnerships(fortranslationalprojects).
• Researchteamsacrossmultiplescientificdisciplines(suchascliniciansandbasicresearchers)oracrossmultipleresearchfields.
• Consortia—existingresearcheffortscharacterizedbycross-sectorcollaboration,oftenwithmultiplestakeholders,inthepursuitofaunifiedresearchmission.
4)RangeofGrantAwards:Thissectiondefinesthemonetaryscaleofthegrantbasedonyourdesiredgrantingmechanisms(seesection3).YourRFPcanstatethattheawardsizesandtimelineswillbedeterminedbythestatedjustifiedneedsofthesubmittedproposal.Alternatively,yourRFPcanstateapredetermineddollaramounttiedtoasettimelineofrelease(tranchesoffunding).
MelanomaResearchAlliance(MRA):FundingCollaborativeResearch
Mission:
Toendsufferinganddeathduetomelanomabycollaboratingwithallstakeholderstoacceleratepowerfulresearch,advancecuresforallpatients,andpreventmoremelanomas.
Program:
TheTeamScienceAwardProgramisthecenterpieceofMRA’sresearchfundingportfolioandfulfillsoneofMRA’sprimarygoals—tofosteracollaborativeresearchprocess.Multidisciplinaryteamsconsistofprincipalinvestigatorswithcomplementaryexpertisewhomaybefromthesameinstitution,inter-institutional,and/orinternational.
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Tobetterunderstandtherangeofawardsizesforeachstageofresearch,wesurveyedpubliclyavailableinformationonthewebsitesof57TRAINmembers(seesection2).Thetable(right)providesbroadparametersofawardsizesforeachresearchstageandprovidecontextasyourfoundationsolicitsproposalsanddecidesonfundingamounts.Althoughtherangesarewide,thereisaclearprogressioninawardsizebasedonadvancementthroughtheresearchpipeline.
5)ReviewProcess:Thissectiondescribeshowyourfoundationwillselectproposalsandprocessesforinternalandexternalreviewbyscientificexperts.Italsosuggestscriteriaforuseduringproposalevaluation.Thesectiontitled“HowDoIJudgetheMeritofandPotentialofaSubmittedProposal?”presentsbestpracticestoengageexpertsinthefieldandmetricstoassesstheresearcherandresearchproposal.
ADVERTISINGYOURFUNDINGOPPORTUNITY
Toattractaslargeanapplicantpoolaspossible,yourfoundationshouldbroadlydisseminateitsRFP.Advertisingopportunitiesexistonavarietyofwebportalswithareachfarbeyondyourfoundation’swebsite.Belowareseveraloptionsworthexploring:
FoundationDirectoryOnlineisafee-basedserviceoftheFoundationCenterthatmaintainsadatabaseofallU.S.privatefoundationsandassociatedgrantopportunities.Becausemostmajoruniversitieshavesubscriptionstothisdatabase,FoundationDirectoryOnlineisaneffectivewaytomarketyourgrantopportunitiestoacademicresearchers.
COSPivotisasearchabledatabasethatenablesresearcherstoidentifyfundingopportunitiesfromgovernment,privatefoundation,andinternationalsources.AlthoughPivotisafee-basedserviceforresearchersanduniversities,thereisnochargetosubmitfundingopportunities.Mostmajoruniversitieshavesubscriptionstothisdatabase.
Disease-specificgrantdatabasesarecentralizedresourcesthatadvertisefundingopportunitiesfromgovernment,foundations,andindustrythatpertaintospecificdiseases.Thesedatabasesareusuallycoordinatedandmanagedbynonprofits.Dependingonyourfoundation’sdiseasearea,theremightbeadisease-specificdatabasetoadvertisefundingprograms.Ifnoneexistsforyourdisease,yourfoundationmightconsidercoordinatingone.TheEpilepsyResearchConnectionisanexampleofthistypeofdatabase.
StageofResearch RangeofAwardSize(peryear)
Basic $10,000-$250,000
Translational $40,000-$500,000
Clinical $50,000-$3,000,000
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5.HOWDOIJUDGETHEMERITANDPOTENTIALOFAPOTENTIALPROPOSAL?KEYTAKEAWAYS
• Considerboththequalityandmeritofproposals,aswellastheabilityoftheresearchertosuccessfullycompletethework.
• Engagediseaseresearchexpertsaspartofthereviewandselectionprocess.
Thesectionsbelowaddresshowtoengageexperts,evaluatethequalityofaresearcher,andassessthescientificandstrategicmeritoftheproposal.
TheJainFoundation:DevelopingtheIn-houseExpertisetoAdvancePhilanthropicScientificResearch
Mission:
TheJainFoundation'smissionistocuremusculardystrophiescausedbydysferlinproteindeficiency.
FundingModel:
TheJainFoundationemploysaninteractiveprojectmanagementprocess,drivenbytheFoundation’sin-house,full-timescientificteam.Incontrasttothecommonlyusedexternalscientificadvisoryboard,whichevaluatesstacksofsubmittedproposals,theJainFoundation’sscientificteamidentifiesareasofneed,solicitsproposalsfromexpertsintherelevantfields,evaluateseachproposalwhileworkingwiththeresearchertooptimizetheaimstoimprovetheproposal’schancesofsuccessandalignmentwiththeFoundation’sgoals,andthenworkswiththeresearchertoensurethattheprojectisexecutedeffectivelyandcompletedtoitslogicalconclusion.Akeyinnovationofthefundingmodelisthereviewperiod’s“collaborativeprojectmodification”thatoccursbetweentheFoundation’sscientificteamandresearcherswhohavesubmittedproposals.TheFoundationandresearchersworktogethertorefinetheproposal,obtaintherequiredresearchmaterials,andbuildarelationshipofmutualrespectbetweengrantorandgrantee.Thisrelationshipisinvaluablethroughoutthegrantreview,monitoring,andrenewalprocessandleadstoaheightenedlevelofintellectualengagementbybothpartiesthatmovesresearchforward.AfinalkeyadvantageoftheFoundation’sscientificteamisitsfocusedexpertisetoidentifyandeliminateresearchroadblocksduetolackofresearchmaterialsorexpertise,bymediatingcollaborationsamongresearchers.
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ENGAGINGEXPERTSINTHEFIELD
Manyofthefoundationsinterviewedforthisreportengageanetworkofscientificleadersasexternalreviewers.Thesereviewersassessthemeritofaproposalutilizingafoundation-issuedrubricormetricstoensurethatevaluationsarestandardizedandtailoredtothefoundation’sinterests.
Inadditiontoexternalreviewers,yourfoundationshouldconsiderhiringaninternalscientificadvisorordirector–oftenreferredtoasaChiefScientificOfficer–tooverseeproposalevaluationandgranteeselection,aswellastohelptodefinethescientificandstrategicprioritiesadvancedbyyourfundingprograms.
Ifyourfoundationisinterestedintranslationalresearch,youshouldalsoconsiderengaginganadvisoryboardofreviewerswithbusinessexpertisetoevaluatethecommercialviabilityofaninvestmentopportunity.Thesereviewerscanalsohelptoidentifyopportunitiesforstrategicpartnershipswithindustrytofacilitatethetranslationofresearchfromthebench-to-bedside.
Inaddition,whenselectingreviewers,itisimportanttotakemeasurestomaintainobjectivityandavoidconflictofinterest.Ifyourfoundationisworkinginararediseaselandscapewithlimitedresearchersorinanotherwiseinsulatedcommunity,youmayneedtoexerciseextracautiontodeterconflictofinterestduringthereviewprocess.Thiswouldinvolveseekingoutabroader,interdisciplinarypoolofexpertswhomightbeoneortwostepsremovedfromyourdiseasearea,inadditiontothemainplayersinyourdiseasearea.
Thesurveyedfoundationsengagereviewersonavolunteerbasisorwithanannualhonorariumrangingfrom$1,000-$5,000,dependingontheleveloftheengagement.
WishesforElliot(WFE):LeveragingStrategicPartnerships
Mission:
WFEisafamily-based,nonprofitorganizationdedicatedtosupportingscientificresearchtoimprovethelivesandprognosesofchildrenstrugglingwithSCN8Amutations,anextremelyrareformofepilepsy.
Strategy:
Asasmallfoundationlackingin-housescientificexpertise,WFEpursuedanalternativestrategytodevelopacompetitive,peer-reviewedprocessforidentifyingpromisingresearchopportunities.WFEpartneredwiththeAmericanEpilepsySociety(AES),aleadingnonprofitsupporterofepilepsyresearch,togainaccesstoAES’sexpertiseandpeerreviewinfrastructure.
Underthetermsofthepartnership,AES’speerreviewpanelsevaluatedproposalsforSCN8AresearchalongwithotherproposalsforAESEarlyCareerResearchFundingprogramsandrecommendedtwoproposalsforfunding.WFEfundedoneproposal,andAESfundedtheotherproposal(forwhichWFEprovided15%ofthecosts).
Throughthisstrategicpartnership,WFEwasabletoachieveahighlevelofscientificrigorinitsselectionprocessaswellassuccessfullychanneladditionalfundingtoSCN8Aresearch.
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WHATTOCONSIDERINARESEARCHPROPOSAL
Researchproposalreviewisatwo-stepprocess.First,yourfoundationshouldassessthesubmittedproposalsforscientificmerit.Next,yourfoundationshouldassesstheproposalsthatpassthisfirstthresholdforstrategicmerit,orhowwelltheproposedresearchfitswithstrategicfundingpriorities.
ScientificMerit:Yourscientificreviewboardshouldfirstconductabaselineevaluationoftheproposal’sscientificmerit,perhapsusingthefollowingkeymetrics:
Metric KeyQuestionsandMeasures
BackgroundandSupportforHypothesis
• Doestheproposalclearlydefineahypothesisthatissupportedbythecurrentbodyofliteratureinthefield?
ResearchObjectives
• Isitclearwhatknowledgeoradvancementthisresearchseekstoachieve?
• Doresearchobjectivesaddressunmetneedsandalignwithyourfoundation’smission?
• Howlikelyisitthattheseobjectiveswillbeachieved?
StudyDesignandMethodology
• Doesthestudydesignandmethodologyclearlytiebacktothehypothesis?
• Doesthisdesignincludeappropriatecontrolsandameanstogathermeasurablequantitativeand/orqualitativedata?
DataAnalysisandInterpretation
• Willtheproposedanalysisproceduresyieldobjectiveresultsthathaveclearimplicationsforthehypothesis?
ScheduleandMilestones
• Doestheproposalestablishastrategicplanwithclearmilestonesandmonitoringcheckpoints?
• Istheproposedtimelinefeasibleandinlinewiththegrantparametersandyourfoundation’sgoals?
BudgetandBudgetJustifications
• Isthereaclearlystatedbudgetwithjustificationsthatmakesenseandadheretoyourfoundation’sfundingpolicies?
Collaboration(ifafoundationpriority)
• Doestheproposaltakeacollaborative,team-orientedapproach?
• Willtheproposedcollaborationadvancethescientificresearchfield?
ResourceBuilding(ifafoundationpriority)
• Doesthisresearchaimtodeveloptoolsorresourcesthatwillexpandtheinfrastructureandcapabilitiesofthefield?Arethesetoolscongruentwithourfoundation’soverallmission?
• Willthesetoolscontributetotheaccountability,collaboration,andresearcheffectivenessinthefield(seesection7)?
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StrategicMerit:Yourscientificreviewboardshouldnextevaluatetheproposalsdeemedtobeofscientificmeritforstrategicmerit,i.e.,thepotentialoftheresearchtopositivelyimpactthefieldandadvanceyourfoundation’smission.Belowarequestionstoconsiderwhenassessingstrategicmerit.
AlignmentwithYourFoundation’sStrategicPriorities
• Howwelldoestheproposalfitwithyourfoundation’sfundingprioritiesandmission?
• Howsignificantwouldyourfundingbetotheresearcher,i.e.,willyourgrantbeahighpriorityinthecontextoftheresearcher’stotalportfolio?
• Ifyourfoundationchosenottofundthiswork,wouldthisresearchbefundedbyothersources?
• Doesthisproposalfitwithyourfoundation’srisktoleranceanddesiredtimeframeforresults?
PotentialtoImpacttheField
• Howlikelyisitthattheproposedresearchwillpositivelyimpactandcontributetothefield?
• Willthisproposalaidinthedevelopmentnewresourcesandinfrastructuresforthefield?
• Howwelldoestheproposalcapitalizeonexistingresourcesandinfrastructuresinthefield?
• Doestheresearchseektoformstrategicpartnershipswithindustry,nonprofits,universities,otherresearchers,and/orinternationalresearchinitiatives?
o Ifso,willtheproposedcollaborationadvancethescientificresearchfield?
• Howlikelyisitthattheproposedresearchwillsucceedinattractingadditionalresourcesandothersourcesoffunding?
• Iftheapplicantisaformergranteeofyourfoundation,howwelldidtheyperformduringpreviousengagements?
OtherConsiderations:Theavailabilityofinstitutionalresourcestoexecutetheproposedresearchisanotherconsideration.Weemphasizethatinstitutionalresourcesareasecondaryconsiderationtoscientificandstrategicmerit,asgoodresearchcanbeconductedatresearchinstitutesanduniversitieswithfewerresources.Themainquestionisnothowmuchcapitaltheuniversityhas,butwhethertheresearcherhasaccesstothetoolsandresourcesneededtoconducttheproposedresearch.Accordingly,theproposalshoulddescribenotonlythetoolsnecessarytocompletetheresearchbutalsohowtheresearcherwillgainaccesstothosetools.
FORFURTHERREADING:
MeasuringandImprovingImpact:AToolkitforNonprofitFundersofMedicalResearch
GivingSmarter:BuildingaHigh-ImpactMedicalPhilanthropyPortfolio
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6.HOWDOIWRITEARESEARCHGRANTAGREEMENT?KEYTAKEAWAYS
• Uponidentifyingtheproposalyouwishtofund,craftagrantagreement,whichisthelegaldocumentthatoutlinestheterms,conditions,andgoalsofthegrant.
• Effectivecommunicationwiththegranteeandresearchinstitutioniscriticaltoadvancingyourfoundation’sstatedmissionandstrategy.
Thissectionprovidesanoverviewoftheelementscommontomostgrantagreements,aswellasadditionaltopicsafoundationmaywanttoconsideraddressingthroughthegrantagreement.
PRINCIPLESFOREFFECTIVECOMMUNICATION
Regardlessofthedetailsofyourfundingagreement,yourfoundationshouldadoptstrategiesandpoliciesthatfacilitatepositiveandeffectiveinteractionwithuniversitypartners.
Beforeenteringnegotiations,yourfoundationshouldconfirmitsabilitytoclearlyarticulateitsgoalsandlimitationstotheotherparty.Inaddition,itshouldsetadeadlineforfinalizingdecisions,buildingintimetoaddressunexpectedissuesthatmayariseasnegotiationsprogress.
FrominterviewsforthisreportanddiscussionsamonguniversityandfoundationleadershostedbyFasterCuresinJuly2012andNovember2015,wehaveidentifiedthreekeyprinciplestoguidebothfoundationsanduniversitiesingrantagreementnegotiations.
Principle1:EnterintoPartnershipsforPurpose
• Althoughtheirprioritiesandexpectationsmaydiffer,universitiesandfoundationsaremission-drivenorganizationsworkingtoservethepublicgood.Thenegotiationprocessshouldbemindfulofthecommongoaltodeliversafeandeffectivetherapiestopatientsasefficientlyaspossible.
• Throughexperience,resources,andcontacts,yourfoundationcanaddvaluetotheprocessfarbeyondtheamountoffundingsupplied.Clearlycommunicatethatvaluetouniversitystakeholderswiththeaimofformingasustainablepartnershipratherthanaone-timetransaction.
Principle2:CommunicateEarlyandOften
• Establishingasinglepointofcontactforyourfoundationandtheuniversityfacilitatesinternalcoordinationandavoidsmultiple,potentiallyconflictingconversationsbetweenthefunder,researchers,technologytransferoffice(“TTO”),researchadministration,andotherentities.
• Settingexpectationsforwhenyourfoundationshouldbenotifiedofcertaindevelopments.Forexample,establishingthattheuniversitymustnotifyyourfoundationwithin60daysofreceivinganinventiondisclosureforaninventionfundedatleastinpartbyyourfoundation.
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Principle3:BeasTransparentastheProcessAllows
• Whenlicensingofthefundedtechnologytoathird-partyispossible,yourfoundationshouldasktoreviewtheinstitution’sdiligencetermsandrequirements.
• Ifinterestedinsupportingthesharingofearly-stageresearchorresources,yourfoundationshouldensurethattheuniversity’ssharingpoliciesarereasonablytailoredforthetechnologyandresearchstage.
• Ifseekingashareofanylicensingrevenue,yourfoundationshouldarticulateyourgoalsanddeterminethetermsforafairallocation.Thisallocationcouldtaketheformofaproportionalshare,flatrate,thresholdrequirement,and/oracap.
KEYELEMENTSOFINCLUSIONINAGRANTAGREEMENT
Dependingonthedepthandbreadthofitsresearchportfolio,yourfoundationmayneeddifferentagreementsfordifferentresearchprojects.Trustedlegalcounselshouldreviewthegrantagreementtoensuresatisfactionofthethelegalrequirementsspecifictoyourorganizationandresearchgrant.However,theelementslistedbelowwilllikelybeincludedinanyacademicgrant.
• Amountandpurposeofthegrant:Althoughitmayseemobvious,theagreementshouldincludethisinformationsothatallpartiesareclearabouttheexpectationsbeforetheresearchbegins.
• Coverageofindirectcosts:Theagreementshouldstatewhetherindirectcostswillbecovered,andifsoatwhatrate.Indirectcosts,alsoknownas“facilitiesandadministrationcosts,”areexpensesthatcannotbedirectlyattributedtoaparticularproject(e.g.,labs,classrooms,offices,libraries,officesupplies,departmentaladministrativestaff,utilities,maintenance,andresearchadministrationstaffandoffices).FederalagenciessuchastheNIHmaypayindirectcostratesof50%ormoredependingontheresearchinstitution.Foundationsthatelecttocoverindirectcoststypicallydosoatamuchlowerrate.A2014surveyoforganizationsconductedbyFasterCuresandtheHealthResearchAlliancerevealedamedianindirectcostrateof10%.
• Granttermandpaymentschedule:Theagreementshouldoutlinehowandwhenthegranteewillreceivefunds.Fundingcanbeadministeredininstallmentstiedtothegranteemeetingcertainmilestonesoutlinedintheresearchplan.
• Reportingexpectations:Theagreementshouldspecifywhetherthegranteeshouldsubmitinterimreportsoronlyafinalreport.Inaddition,toensurethatreportsarecomprehensiveyetdigestibleatalaylevel,theagreementshouldprovideguidelinesaboutthetypeofinformationtoreport.Updatesviateleconferencecouldserveasalternativestowrittenreports.Ifareportrevealsthateventsarenotunfoldingasplanned,yourfoundationshouldhelpthegranteetomakecoursecorrectionstoensureeffectiveuseofyourfunding.KeyconsiderationsforgrantreportingwillbecoveredinSection#7,“HowDoIMonitoraResearchAward?”
• Publicationandpublicity:Theagreementshouldoutlinetheexpectationsforpublishingresultsandclarifyhowthegrantitselfwillbepublicized(ifatall).
• Confidentiality:Theagreementshouldclarifyhowboththegrantorandgranteewillhandleandexchangeconfidentialinformation.
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• Budget:Theagreementshouldsetforththebudgetandstatehowchangestothebudgetcanbemadeandaddressedifnecessary.
• Provisionsforterminatingthegrant:Itiscommontoallowforterminationwhere,forexample,thegrantee’stax-exemptstatusischangedorrevoked,orthegranteefailstoabidebythetermsofthegrantagreement.
• Intellectualproperty:Foundationsandgrant-makingorganizationsaretypicallynotstructuredtomanageintellectualproperty.Academicgrantsusuallystatethatownershipofintellectualpropertyresideswiththeuniversity.However,foundationsarebecomingincreasinglyinterestedinplayingaroleinhowtheintellectualpropertymovesforward,orinsharinganyrevenue.Wediscusstheseapproachesinthefollowingsection.
OTHERPROVISIONSTOCONSIDER
Thedecisiontoincludetheprovisionsdiscussedbelowinthegrantagreementwillvaryacrossorganizations,andevenacrossprojectswithinthesameorganization.Forexample,afoundationthatfundsbasicresearchmayplaceahighpriorityondataandresourcesharingandincludeprovisionsdesignedtofacilitatesuchsharing.Incontrast,afoundationthatfundslaterstageortranslationalresearchmayfocusmoreonhelpingtomoveanyintellectualpropertygeneratedtowardcommercialapplication.
ThroughdiscussionswithrepresentativesfrombothuniversitiesandpatientfoundationsatFasterCures,weidentifiedthreeroadblocksfrequentlyencounteredingrantagreements:
• Sharingofresourcesinbasicresearch
• Intellectualpropertyandroleofthefunder
• Revenuesharing
SharingofBasicResearchandResources:Manyfoundationsthatfundscientificresearch,particularlyearly-stageresearch,wanttoensurethatresearchersacrossinstitutionsworkcollaborativelysothatdiscoveriesmoveforwardefficiently.Foundationscanpromotetheircollaborativepolicesthroughtheirgrantagreementsandmayconditionfuturefundingonthedegreeofcooperationandcollaborationdemonstratedbyaninvestigator.Belowarepossibleprovisionsforconsideration.
ParticipationinWorkshopsorCollaboration:Somefoundations,particularlythosefocusedonaspecificdiseasearea,requireitsfundedresearcherstodiscussandshareinformationandtoolswitheachother.Thisconditionisoftenemployedbyfundersinadiseaseareawithrelativelyfewresearchersorwithalargeportfolioofresearchersworkingonasimilartypeofproject.
Publication:Academicresearchersarehighlymotivatedtopublishtheirworkinacademicjournals.However,ittakestimetoprepareanarticleforpublicationinaprestigiousjournal,whichcanbecriticaltocareeradvancement.Moreover,academicresearchersmaynotbeeagertoshareresultsfromfailedexperiments.Manyfundersrecognizethesechallengesandrequirepublicationofallresults,withinareasonableamountoftime,asaconditionoffunding.Fundersmayalsoconsiderprovisionsthatreservetheirrighttopubliclyreleasetheresultsoftheresearchiftheresearcherfailstodosowithinareasonableamountoftime.
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SharingData,Tools,andResources:Accesstoresearchtoolsiswidelyacknowledgedasacriticalcomponenttoscientificadvancement.Atthesametime,reasonablerestrictionsmaybenecessarytopreserveopportunitiesforcommercialdevelopment.Therefore,fundersshouldbecarefultobalancetheneedsofthescientificcommunitywiththerequirementsofproductdevelopmentwhencraftingprovisions.
Research-UseOnlyLicense:Aresearch-useonlylicenseauthorizesthelicenseetouseintellectualpropertyforresearchpurposesonly.Thistypeoflicensefacilitatesresearch,withoutcompromisingownershipoftheunderlyingintellectualproperty.Itmaybeparticularlyusefulwhenresearchisinarelativelyearlystage,suchthatthebenefitsofsharingoutweightherisks.Furthermore,thislicensepreservestherightsoftheuniversitytoofferexclusivecommercialrightstoathird-partycompanythatisinterestedinthetechnology.Theselicensescantakedifferentforms.Earlycommunicationwiththegranteewillensureanapproachthatisacceptabletobothsides.
• OptionA:Grantorrequiresgranteetoextendanonexclusive,sub-licensablelicensebacktothegrantor,whichthegrantormaythendistributesolelyforresearchpurposes.
• OptionB:Granteeagreestoextendanonexclusive,royalty-freelicensetoalimitednumberofinstitutionswhowillhavepermissiontouseintellectualpropertygeneratedwithfoundation-fundedresearchsolelyforresearchpurposes.
IntellectualPropertyandtheroleoftheFunder:Manyfoundationsplacehighimportanceofworkingwithinstitutionsthatareequallydedicatedtomovingpromisingtechnologyforward,includingafterlicensingtoathirdparty(e.g.suchasbiotechorindustrypartners).Theymaybeconcernedaboutthededicationofallindustrypartnerstoadvancetherapeuticdevelopmentwithintheirdiseasespace.Therefore,selectingalicenseewiththecapability,expertise,andmotivationtomoveaproductforwardiscriticalandfoundationsincreasinglywanttoplayaroleintheselectionprocess.
Moreover,foundationswithbroadnetworksandsubjectmatterexpertisemaybeabletocontributetotheidentificationofpotentiallicensees.Indeed,manysurveyeduniversitiesandTTOsindicatedthattheywouldwelcomeinputfromfunders.However,grantprovisionsthatremovefinaldecision-makingauthorityfromtheuniversityorgivethefoundationtherightto“march-in”andtakecontroloftheintellectualpropertyifthelicenseeisnotadvancingthetechnologycanbeproblematic.Specifically,suchprovisionsmayhavetheunintendedconsequenceofdiscouragingpromisinglicenseesorderailingnegotiations.However,foundationscanplayanimportantoversightroleandshouldworkwiththegranteetodevelopacollaborativeandcoordinatedlicensingeffort.
IdentifyInterestinCommercializationProcess:Funderswhodesirearoleinthecommercializationprocessshouldclearlycommunicatethisintentinthegrantagreement.Exampletextisasfollows:
“GivenFoundation’snetworkandexpertise,bothpartiesrecognizethatFoundationcanbeavaluablepartnerinthesearchforalicenseeoftechnologyfundedbythisgrant.Accordingly,thepartiesagreethatwithin30daysofthedecisiontopursuepatentprotection,theFoundationwillbeofferedanopportunitytoconferwiththeInstitutiontoidentifyandsuggestpotentiallicensees.”
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Inaddition,foundationsshouldidentifyacontactpersonwithintheofficeresponsibleforcommercializinginventions,usuallytheuniversity’sTTO.Althoughuniversitiesandfoundationsarealignedintheirgoaltomovetechnologymoveforward,foundationscanexercisesomeoversightbyrequiringtheuniversitytoshareitsdiligencetermsearlyintheprocesssothatitcanidentifypotentialvulnerabilities.Buildingintotheagreementarequirementforregularcommunicationwiththeuniversityaboutlicensingefforts,evenafterthegranttermhasended,willnotonlykeepthefoundationinformedbutalsoenablethefoundationtoidentifyasyetuntappedresourcesorpotentialpartners.
RequireNotificationofInventions:Foundationswhodesirearoleinthecommercializationprocessshouldalsorequirenotificationwhenintellectualpropertyisdevelopedwithfoundationfunds.Toreducetheadministrativeburdenoninstitutions,thesereportingrequirementsshouldbeconsistentwiththoseestablishedbytheNIH.
RevenueSharing:Manyfoundationsareexploringrevenue-sharingprovisionstogeneratemoresustainablefundingstreams.Theseprovisionsareparticularlyappealingforfundersoflaterstageresearchbecausethelikelihoodofgeneratingintellectualpropertywithcommercialpotentialismuchhigher.Differentinstitutionsarelikelytohavedifferentpoliciesregardingrevenuesharing.Manysurveyedinstitutionsindicatedthatrevenuesharingisanappropriateandreasonablestrategy,butitmustbeinlinewiththefoundation’scontributiontotheresearch.Althoughrevenue-sharingprovisionscantakemanyforms,thefollowingaretwocurrentexamples:
• Revenueisdistributedinamountsproportionaltothefunder’scontribution,whichisthefairestallocation.
• Thefunderreceivesaflatroyaltyrate,cappedatareasonablemultipleoftheaward,whichisappealingbecauseofitsstraightforwardapplication.
Thereasonablenessofthenegotiatedratewilldependonotherdeductionsorcontributionsmadebythefoundation,aswellasthespecificresearchbeingfunded.Forexample,becauseuniversitiesdevoteresourcestofilingforpatentsformanyinventions—notjustthosethatgenerateroyalties—afoundationthatofferstocoverpatentingcostsmaybeabletonegotiateahigherroyaltyrate.
Regardlessoftheapproachemployed,foundationsshouldconsiderstatingathresholdthatmustbereachedbeforetheitsrighttosharekicksin.Suchathresholdensuresthatafoundationsharesinanybigwinners,butavoidstheadministrativeburdenofdividingsmallamountsofrevenue.Athresholdalsogivetheuniversityachancetorecoupsomeofitsindirectcoststhatmaynothavebeencoveredbythefoundation.
FORFURTHERREADING:TRAINFoundation-UniversityPartnershipsToolkit
UnlockingIntellectualProperty:PrinciplesforResponsibleNegotiation
University-FoundationRelations:FromTransactionaltoTransformativePartnerships
KeyResearchAgreementTerms&Definitions
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7.HOWDOIMONITORARESEARCHAWARD?KEYTAKEAWAY
• Progressandfinalgrantreportsarekeycheckpointsofthefundingprocess,andshouldcapturetheroadblocksandproposedsolutionsoftheawardedproject.
Likeanyinvestment,choosingwhoandhowtofundisonlythefirststageoftheprocess,withthenextdecisionbeingwhethertocontinuefundingaspecificresearchproject.Scientificresearchisnotlinear,withroadblocksahallmarkoftheprocess.Anaward’sprogressandfinalgrantreportarekeymaterialsthatshouldcapturethesechallengesanddemonstratetheresearcher’sabilitytocontinueresearchadvancement.Thefollowingsectiondiscusseshowtoregularlymonitorresearchprogress,identifypotentialchallenges,andassesswhetheraprojectmeritscontinuedand/orpossiblerenewedfunding.
GRANTMONITORINGANDPROGRESSREPORTS
Dependingonthelengthofagrant,yourfoundationcansolicitprogressreportseverysixmonthsorannually.Thefollowingtemplatecanfacilitatethereviewofresearchprogress.Progressreportsarerequiredforsponsoredresearchawards,butarenotregularlyrequiredforgiftstoauniversity(seeSection#3).
PROJECTAIM:
Accomplishmentssincelastprogressreport
Challengesencountered
Proposedsolutions
Anticipatedmilestonesfornextreportingperiod
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Becauseaproject’ssuccesscannotalwaysbepredictedatitsoutset,weencourageyoutoconsidertheabilityofagranteetoadapttoresearchchallengesandgeneratereasonablesolutionstocontinuetoadvancetheproject’saims.Theflowchartbelowservesasaguidetoquicklyassessaresearchgrant’sprogress.Warningsignsincludethefollowing:
• Continuedlackofprogressinprojectaims.
• Lackoffeasibleproposedsolutionstoencounteredchallenges.
• “Missioncreep”orappearanceofnewaimsnotpreviouslydiscussedand/orwithlimitedvaliditytooriginalprojecthypothesis.
Wasprogressmadeinalignmentwithproject
aims?
Yes
Continuemonitoring/fundinguntilnextprogress
report
No
Wereresearchchallenges
encountered?
Yes
Didtheresearcherproposeasolutionto
overcomethechallenge?
Yes
Moveforwardwithproposedsolutionandcontinue
monitoring/fundinguntilnextprogressreport
No
Discussroadblockswithresearchertodeterminewhethercontinuedfundingofprojectisreasonable
No
Reasesstoseewhytheremayhavebeenlackof
progress,expectresearchertoproposesolution
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FINALGRANTREPORT
Attheconclusionofthefundingperiod,yourfoundationshouldrequestafinalreportthatdescribestheproject’soutcomesandimpact.Youcanstructurethefinalreportintermsoffourmetrics:Accountability,Collaboration,ResearchEffectiveness,andResourceBuilding.Althoughtheprogressreportformatcanserveasanoutline,thefinalreportshouldprovidegreaterdetailaboutthesuccessesandfailuresoftheresearchproject.Thequestionsandmetricsbelowcanassistinrequestingtheprojectinformationmostimportanttoyou.
Accountability:Thedegreetowhichagranteetransparentlydetailsprojectexecutiontothefoundation.
• Dothespecificaimsandactivitiesoutlinedinthefinalreportmatchthoseagreeduponintheoriginalworkplan?
• Wereeachoftheprojectaimsaddressed,andwhatweretherelevantoutcomes?• Whatweretheencounteredchallenges,andhowweretheyovercome?• Wastheprojectcompletedwithintheagreedupontimeline?• Wastheprojectcompletedwithinbudgetguidelines?Ifnot,isthereagoodexplanation?
Collaboration:Thedegreetowhichthegranteeengagesandbuildsrelationshipstoacceleratetheoverallfundingandresearchsupportedbythefoundation.
• Wereacademicorindustrycollaborationsinitiated/facilitatedbytheproject?• Wereanyinterdisciplinarycollaborationsinitiatedduringtheproject?
ResearchEffectiveness:Thedegreetowhichthegrantee’sconductedresearchyieldssufficientdataanddeliverablesinalignmentwiththeirproposal’sstatedobjectivesandaims.
• Hastheprojectraisednewpointedresearchquestionstopursue?• Didtheprojectemploynovelconcepts,approaches,ormethods?• Doprojectresultschallengeexistingparadigms?• Doprojectresultsdevelopnewmethodologiesortechnologies?• Howwereresearchresultsdisseminated?
o Numberofpublishedarticlesinpeer-reviewedjournalsorabstractspresentedatconferences.o Numberofseminarsheldfornon-academicaudiences.
• Didtheprojectresultinotherdeliverablessuchasproductsorpatents?• Hasfollow-onfundingbeenawardedtosupportresearchrelatedtotheawardedproject?
ResourceBuilding:Thedegreetowhichthegrantee’sresearchcontributescriticalresourcesandinfrastructuretothegreaterscientificcommunity.
• Howmanytraineesweresupportedbythisaward(ifapplicable)?• Didtheprojectresultintoolsorinfrastructurethatbenefitstheresearchfield?• Howwereprojectresults(publishedornegativedata)sharedwiththefield?
FORFURTHERREADING:
MeasuringandImprovingImpact:AToolkitforNonprofitFundersofMedicalResearch
TRAINFoundation-UniversityPartnershipsToolkit
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MichaelJ.FoxFoundation(MJFF):De-RiskingInnovation
Mission:
MJFFisdedicatedtofindingacureforParkinson'sdisease(PD)throughanaggressivelyfundedresearchagendaandtoensuringthedevelopmentofimprovedtherapiesforthoselivingwithParkinson'stoday.
StrategyandImpact:
MJFFinvestsinhigh-risk,high-rewardresearchtargets,withthegoalofde-riskingtheParkinson’sfieldandmakingitasattractiveaspossibleforallresearchers,particularlyindustrygroupsthatplayasignificantpartincommercializingtherapies.
In2005,MJFFbegansupportingnovelresearchatVanderbiltUniversitytodevelopanentirelynewclassoftreatmentforPD,focusedontheglutamatesystemasameanstobypassdopaminereplacementaltogether,withafocusontheglutamatereceptorcalledmGluR4.
In2012,ontheheelsofnearly$5millioninMJFFinvestment,VanderbiltUniversityannouncedamajorcollaborationwithBristol-MyersSquibbfordevelopmentofapotentialfirst-in-classsymptomatictreatmentforPD.Typically,thetimelinefortranslatingaresearchdiscoveryintoanewtreatmentforadisordersuchasPDcantakeasmanyas20years.WithMJFF’ssupport,thefundedresearchgroupwasabletoradicallyacceleratethisprocess.
8.HOWDOIMEASURESUCCESS?KEYTAKEAWAYS
• Measuringthesuccessofawardedgrantsinvolvebothtangibleandintangibleimpactmetrics.
o Tangiblemetricsincludefruitfulcollaborationsandfollow-onfunding,aswellasresearchinfrastructuredevelopmentandworkforcedirectlysupportedbytheaward.
o Intangiblemetricsincludedevelopmentofnewandinnovativethinkingforthefield,andwhethertheworkdemonstratesthekindofscientificambassadorshipyourfoundationwishestoproject.
Thelackoflinearityinscientificresearchmaymakemappingsuccessdifficult,butdoesexpandthewaystomeasuretheimpactofacompletedresearchaward.Althoughitisstraightforwardtoaskwhetherthespecificmilestonesofaprojectweremet,theabilitytogaugethelong-termimpactandbenefitsforthefieldisoftenlimitedattheendofafundingperiod.
Thefirstgoalofthissectionistomakesenseofalltheinformationcollectedfromtheprogressandfinalreports.Thesecondgoalistoprovideaframeworkofquestionstohelpyoutoevaluatewhethertorenewaresearchaward.Weapproachthisevaluationbyconsideringtheimpactofthestakeholdersinvolvedinasignedsponsoredresearchagreement.
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MEASURINGTHETANGIBLEIMPACTOFARESEARCHPROJECT
Thebasiccurrencyoftheacademicresearchfieldliesinscientificpublicationsandpresentations.Researcherswhosuccessfullycommunicatetheirresearchfindingsthroughpeer-reviewedmanuscriptsandscientificconferencesandseminarsaregeneratingimpact.However,impactcanalsobemeasuredintermsofcollaborationswithacademicandindustrypartners,follow-onfunding,andworkforcedevelopment.
• Collaborations:Impactfulcollaborationsincludeengagementwithresearcherswithinthegrantee’suniversityandpartnersinotherinstitutions.Forlate-stagebasic,translational,andclinicalprojects,engagementofindustrycollaboratorsexemplifiesaresearcherapplyingtheirworkbeyondthebench.
• Follow-onFunding:Follow-onfundingisanindirectmeasureofthevalueoftheworktothefieldandadirectmeasureoftheresearcher’sabilitytocapitalizeandadvancetheworkinanenvironmentoflimitedresearchfunding.Thefollow-onfundingagencyisalsoanimportantconsideration,asitrepresentsnewfinancialcollaboratorsthatcanspanfederal,industry,andothernonprofit/foundationfunders.
• WorkforceDevelopment:Recruitmentofnewresearchersintoafieldisacriticalfactorforcontinuedandbetterresearch.Withthefocusonresearchadvancesandnewmedicalproducts,theimportanceofeducatingthenextgenerationofscientiststobecomethenewexpertsandleadersintheirfieldisoftenoverlooked.Thus,youmightassesstheresearcher’sabilitytonotonlyeducateundergraduate,predoctoral,andpostdoctoraltrainees,butalsosupporttheirtransitiontoandsuccessinthenextstageoftheirscientificcareers.
MEASURINGTHESCIENTIFICMERITOFARESEARCHPROJECT
Thefinalresearchreportshoulddiscussthescientificmeritofthecompletedworkandshouldprovideasenseofitsvaluetotheentirefield.Measurementsofthework’simpactincludeitsexpansionofscientificknowledge,innovativeandappliedpotential,andoverallbenefittotheresearchfield.Answeringaresearchquestionoftenbegetsonlymorequestions,andbeforerenewingfunding,youshouldconsidertherelevanceanddirectimpactofnext-stagequestionstoyourdiseaseareaandyourfoundation’smissionandobjectives.
• Didtheprojectresultinanewandinnovativewaytoapproachresearchinyourdiseasearea?
o Doprojectresultsdirectresearcherstoanewwayofthinkingorproposenovelapproachestosolvedisease-relatedproblems?
o Doprojectresultspointtoanoveldiagnostictool,orpossiblyanewtherapytobenefitpersonsaffectedbydisease?
• Didtheprojectleadtonewtoolsorinfrastructurethatwillbenefittheentireresearchfield?Suchtoolsorinfrastructuremightincludenewanimalmodels,experimentalassaysanddesigns,andresearchdatabasesthatfacilitatethesharingofdataandinitiationofcollaborations.
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MEASURINGTHEIMPACTFORYOURFOUNDATION
Becausethelandscapeofscientificresearchisdiverse,itisdifficulttoassembleabroadlyapplicablesetofmetricstoassessthesuccessofanaward.Therefore,theassessmentmustattempttoanswerthefollowingquestions:
• Dotheprojectresultssupportandadvanceyourfoundation’smission?
• Doesthegrantee’sworkdemonstratethekindofscientificambassadorshipyourfoundationseekstoproject?
• Mightthenewresearchquestionsraisedbythegrantimpactandguideyourfoundation’sstrategicobjectives?
FORFURTHERREADING:
MeasuringandImprovingImpact:AToolkitforNonprofitFundersofMedicalResearch
GivingSmarter:BuildingaHigh-ImpactMedicalPhilanthropyPortfolio
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CONCLUSION
Philanthropyaccountsforonly3%oftheoverallfundingforscientificresearch,butitcanhaveanoutsizedimpactbytargetingknowledgegapsandbuildingneededresearchinfrastructure.Inaddition,althoughmeasuringthesuccessoffundingscientificresearchhasbeendescribedas“youwillknowitwhenyouseeit,”ourinterviewswithnonprofitfundersofresearchrevealedseveralcontributorstoasuccessfulventureintoscientificphilanthropy:
• Theneedtomaintainalaser-likefocusonthefoundation’sgoals.
• Theimportanceofassessingthegapsinresearchwiththehelpofsubjectmatterexperts.
• Thewillingnesstoemploymultiplefundingapproachestoachieveafoundation’sstrategyandobjectives.
• Thevalueofidentifyingandfacilitatingmultidisciplinaryacademicandindustryresearchpartnerships.
• Thebenefitofmaintainingopencommunicationandtransparencybetweenthegrantor,grantee,andacademicinstitution.
Scientificresearchisanobleendeavor—onethatmanyadvocateforandprofessionallypursue.However,difficultiesremaininhowtoidentifythebestphilanthropicprocessandopportunitiestosupportresearch.Ourgoalwiththisreportistoidentifycommonapproachesandbestpracticestoaddressthepotentialpitfallsandchallengesthatcomewithsupportingscientificresearchinacademicinstitutions.
However,aswithallthingsinscience,youcannotknowwhatwillorwillnotwork,untilyouperformtheexperiment.