but the nhs is in crisis. - arkivum · 2009. 8. 31. · but the nhs is in crisis. the nhs cannot...

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When I was very kindly asked to do this talk, Pip Laurenson said “just talk about the need for change that you’ve seen during your ?me working on digital preserva?on and archiving” - “you’ve worked on European projects, you’ve been involved in technology transfer, you’ve spun out a business from a University, and you’ve established Arkivum- there’s lots to say”. I thought no problem, I can talk about all that. Then I started thinking a bit harder about what I’d say. And I kept coming back to the same theme. “Digital preserva?on is bloody hard work”. I don’t mean doing EU projects like PERICLES - that’s the fun bit. What I mean is that it’s bloody hard making stuff live on aMer funding runs out in EU projects. For example, it’s bloody hard trying to make a business case for preserva?on and archiving that stacks up to get commercial investment in a new business. And, in general, it’s bloody hard trying to sell digital preserva?on solu?ons outside of the tradi?onal hun?ng grounds of museums, libraries, archives and special collec?ons. But, I can’t really stand here and do a talk where I moan a lot about things being bloody hard – especially aMer all the inspira?onal things we heard last night at the Digital Preserva?on Coali?on awards! So I thought about why it seems so hard. I thought about whether there’s an alterna?ve way of doing things. So I thought I’d talk about where I think there are some great opportuni?es for digital preserva?on to be applied in new ways and to new problems. In par?cular, new opportuni?es for digital preserva?on to be adopted and used by a far bigger community than it is today. And new opportuni?es for us all to benefit from these new uses and these new communi?es. I’m calling this ‘preserva?on through the power of many’ – which is at least a beUer ?tle than “digital preserva?on: it’s bloody hard work!”. 1

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Page 1: But the NHS is in crisis. - Arkivum · 2009. 8. 31. · But the NHS is in crisis. The NHS cannot cope with current workloads. Staff are up in arms about pay and condi?ons. Rarely

WhenIwasverykindlyaskedtodothistalk,PipLaurensonsaid“justtalkabouttheneedforchangethatyou’veseenduringyour?meworkingondigitalpreserva?onandarchiving”-“you’veworkedonEuropeanprojects,you’vebeeninvolvedin

technologytransfer,you’vespunoutabusinessfromaUniversity,andyou’veestablishedArkivum-there’slotstosay”.Ithoughtnoproblem,Icantalkaboutallthat.

ThenIstartedthinkingabitharderaboutwhatI’dsay.AndIkeptcomingbacktothesametheme.“Digitalpreserva?onisbloodyhardwork”.

Idon’tmeandoingEUprojectslikePERICLES-that’sthefunbit.WhatImeanisthatit’sbloodyhardmakingstuffliveonaMer

fundingrunsoutinEUprojects.Forexample,it’sbloodyhardtryingtomakeabusinesscaseforpreserva?onandarchivingthatstacksuptogetcommercialinvestmentinanewbusiness.And,ingeneral,it’sbloodyhardtryingtoselldigitalpreserva?on

solu?onsoutsideofthetradi?onalhun?nggroundsofmuseums,libraries,archivesandspecialcollec?ons.

But,Ican’treallystandhereanddoatalkwhereImoanalotaboutthingsbeingbloodyhard–especiallyaMerallthe

inspira?onalthingsweheardlastnightattheDigitalPreserva?onCoali?onawards!

SoIthoughtaboutwhyitseemssohard.Ithoughtaboutwhetherthere’sanalterna?vewayofdoingthings.SoIthoughtI’d

talkaboutwhereIthinktherearesomegreatopportuni?esfordigitalpreserva?ontobeappliedinnewwaysandtonewproblems.

Inpar?cular,newopportuni?esfordigitalpreserva?ontobeadoptedandusedbyafarbiggercommunitythanitistoday.Andnewopportuni?esforusalltobenefitfromthesenewusesandthesenewcommuni?es.

I’mcallingthis‘preserva?onthroughthepowerofmany’–whichisatleastabeUer?tlethan“digitalpreserva?on:it’sbloody

hardwork!”.

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Letmestartbytakingaboutadifferentworld-theNHS.

TheNa?onalHealthServiceintheUKistheworld’sfiMhlargestemployer.TheNHSistoppedonlyby

USdepartmentofdefense,theChineseMilitary,Walmartand,somewhatironically,MacDonalds,

whichallbyitselfhasprobablyhelpedboosttheNHSrankings!

TheNHSemploys1.7millionpeopleandhasabudgetofnearly£140billionpounds.

TheNHSissimplyhuge.

TheNHSprovidesfreepubliclyfundedhealthcaretotheUK’s65millionresidents.

TheNHSdealswithastaggering1millionpeopleevery36hours.

TheNHSdoesafantas?cjob.

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ButtheNHSisincrisis.

TheNHScannotcopewithcurrentworkloads.

Staffareupinarmsaboutpayandcondi?ons.

Rarelydoesadaygobywithoutsomeformofnewsstoryaboutwai?nglists,staffshortages,strikesby

juniordoctors,lackofbeds,andamul?tudeofotherproblems.

Despitethis,theNHSremainsoneoftheworldsbesthealthcaresystems.Probablyeveryoneinthis

roomhasbeenthankfultotheNHSatone?meorother.

TheproblemtheNHSfacesisapopula?onthatisbothgrowingandlivinglonger.

Wenowsurvivethediseasesthatusedtobekillersonlyafewdecadesago.Insteadweliveontoface

heartdisease,cancer,strokes,demen?a,alzheimersandotherhorrorsofoldage.Thesediseasescan

becomplex,hardtotreat,drawnoutandofcourseextremelyexpensive.

It’snowondertheNHSisstruggling.

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Isthesolu?ontoincreasestaffing?

Isthesolu?ontokeepincreasingbudgets?

Isthesolu?ontoincreaseefficiencies?

Isthesolu?ontonewtechnologies?

Theanswerisbothyesandno.

Thesethingswillallhelp,buttheyarenotthewholesolu?on.Theyareliketrea?ngthesymptoms

andnotthecause.

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Perhapsthemostimportantpartofthesolu?onisforfewerpeopletogetillinthefirstplace.

Healthierlifestylesmeanfewerailments,fewertripstothedoctorsortohospital,andahuge

reduc?onontheworkloadoftheNHS.

hUps://www.gov.uk/government/uploads/system/uploads/aUachment_data/file/307703/LW4L.pdf

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Justtoputthisintocontextverybriefly,here’ssomeexamples.

AccordingtoCancerResearchUK,anunhealthylifestyleistherootcauseofaboutathirdofall

cancers.

Thereareover350,000newcasesofcancereachyear.

Expertssaymostcasesofprematuredeathfromheartdiseasearecompletelypreventable.

160,000peoplediefromheartdiseaseeachyear.

hUp://www.nhs.uk/livewell/over60s/pages/the-top-five-causes-of-premature-death.aspx

hUp://www.cancerresearchuk.org/health-professional/cancer-sta?s?cs

hUps://heartuk.org.uk/press/press-kit/key-facts-figures

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It’sclearthatifonlypeopletookbeUercareoftheirhealththentheNHSwouldn’tbeincrisis.And

we’dallfeelalotbeUerforit.ThisiswhatImeanbythe‘powerofmany’.65millionpeopledoing

justaliUlebitmoretolookaMerthemselveswouldhaveatransforma?veeffectonthe1.6mpeoplein

theNHSthatlookaMerthem.

Myargumentisthatthesameistruefordigitalpreserva?on.

Ifonlypeoplecrea?ngdigitalcontenttookbeUercareoftheirdata.

Thepowerofmanyappliesjustasmuchtothelong-termhealthofdigitalcontentandourcollec?ve

digitallegacyasitdoestothelong-termhealthofourna?onandthehealthcaresystemthatsupports

it.

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Letmeputthisintosomestarknumbers.

Thereare65millionpeopleintheUKwith680,000qualifiedhealthcareprofessionalsintheNHSto

lookaMerthem.

Thesame65millonpeopleallgeneratedigitaldatainonewayoranother,eitherprivatelyas

individuals,throughtheiremploymentandwork,orbybeingpartofrecordsorcontentcreatedby

others.

Butmyes?mateisthatthere’sprobablyonly10,000professionalsintheUKwhohaveanyformal

trainingindigitalpreserva?on,i.e.peoplewhoknowhowtolookaMerthedigitallegacythatweareall

crea?ng.Foreveryonepersonwhoistrainedinhowtokeepdigitalcontentalive,thereare6,500

peoplegenera?ngthatdigitalcontentday-inandday-out.

That’sastaggeringgap.That’salsoahugeopportunity.The‘powerofmany’couldhaveanenormous

effectifwecouldgetthat65milliontodojustaliUlebitmoredigitalpreserva?onthemselves.

hUp://www.nhsconfed.org/resources/key-sta?s?cs-on-the-nhs

“In2015,acrossHospitalandCommunityHealthcareServices(HCHS)andGPprac?ces,theNHS

employed149,808doctors,314,966qualifiednursingstaffandhealthvisitors(HCHS),25,418

midwives,23,066GPprac?cenurses,146,792qualifiedscien?fic,therapeu?candtechnicalstaff,

18,862qualifiedambulancestaffand30,952managers.”

678,912qualifiedstaff(notincludingmanagers).

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ThisisthecruxofwhatI’mproposing.

Weneedtoapplydigitalpreserva?on‘upstream’intotheworldofthosecrea?ngcontent.

Andifwedon’tdothisandtakeadvantageofthe‘powerofmany’,thenwe’llfaceallsortsof

problems‘downstream’inourarchivesandmemoryins?tu?ons.

I’llspareyouthestatsandleavethe‘zeUabytesdigitaluniverse’toIDC,butifyouthinkaboutsocial

media,theinternetofthings,cloudcompu?ngandahostofothertransforma?vetechnologiesthen

threethingsareclear:

-  Wearegenera?ngeverlargervolumesofdigitalcontent

-  Wearegenera?ngevermorecomplexdigitalcontent

-  Ourhistoryisbecomingevermoredigitalandevermorefragile

hUp://uk.emc.com/leadership/digital-universe/index.htm?pid=landing-digitaluniverse-131212

hUp://www.idc.com/downloads/where_is_storage_infographic_243338.pdf

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Ifitwereeasytomovedigitalpreserva?onupstreamthenwe’dhavedoneitalready.Realizingthe

‘powerofmany’requiresthreethings.

1.  Digitalpreserva?ontoolsortechniquesneedtoprovideimmediatebenefitintheworldof

contentcreators.Thetradi?onalargumentsusedinmemoryins?tu?onsaboutsafeguardinga

digitallegacysoit’saccessibleitthefuturewon’twork.Theargumentneedstobethatthereis

benefitrightnowbysolvingabusinessproblemrightnowandnotaboutsomebenefitthatmight

accrueatsomepointinthefuture.

2.  Digitalpreserva?ontoolsortechniquesneedtoreducecosts.Thetradi?onalargumentof

inves?ngindigitalpreserva?onbyspendingabitofextramoneynowinordertoreducecostsof

accessorlossinthefuturewon’twork.Theargumentneedstobethatdigitalpreserva?oncan

notonlysolveabusinessproblemrightnow,butitcanalsosavemoney-atthesame?me.

3.  Digitalpreserva?ontoolsandtechniquesneedtobeintegratedandautomatedintothe

environmentwherecontentiscreated.Thisisactuallyjustanotheraspectofloweringthecosts,

butinthiscasethe‘peoplecosts’.Thereneedstobenoextrabarriersinplace,nohurdlesto

jump,noextraprocessesandprocedurestofollow.Peopleneeddigitalpreserva?ontoworkfor

themautoma?callyinthebackground–almostasifitwasn’tthereatall.

Myargumentisthatifwecandothosethreethingsthenitisen?relypossibletoapplydigital

preserva?ontoolsandtechniquestosolveimmediatebusinessproblemsandasaresultachieveat

leastsomeofthe‘powerofmany’.Andmostimportantly,ifwedothisthenweasadigital

preserva?oncommunitywillallbenefitasaresult.Morepeoplewillbemakinguseofdigital

preserva?ontoolsandtechniques,includingindustrieswherethereisalotmoremoneyavailable,and

notonlywillwebeonthereceivingendofdigitalcontentthatisalotmore‘healthy’butwe’llhavea

lotmorepeoplewithavestedinterestinsustainingandadvancingdigitalpreserva?onasadiscipline.

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Pipedreamorpossibility?

IwanttospendtherestofthistalklookingatsomeexamplesthatIseeinmyday-to-dayworkat

Arkivumofhowwecanachievethesethings.

I’mdeliberatelygoingtopickexamplesoutsidethetradi?onalareasofheritageandcollec?ng

ins?tu?ons.

InsteadI’mgoingtopickexamplesinfinance,healthcare,pharmaceu?calsanddataprotec?on.

I’mgoingtopickexampleswhereIthinktherereallyispoten?alandnotjustafigmentofmy

imagina?on!

I’mgoingtopickexampleswherethedigitalpreserva?ontechnologiesandtechniquesweneed

alreadyexist–it’sacaseofhowtoapplythemtonewproblemsandinnewways.

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FirstupisGDPR,whichistheforthcomingEUGeneralDataProtec?onRegula?onwhichappliesinMay

2018.

ThinkofthisasexpandingtherequirementsoftheDataProtec?onActintheUK.

Andno,Brexitdoesn’tmeanitwon’tapply–ifwewanttocon?nuetradingwithEuropethenwe’ll

needtosupportacompa?blesystemofDataProtec?on,whichmeansGDPR.

GDPRappliestoPersonalDatawithabroaddefini?onandhasrequirementsonthosethatcontroland

processthatpersonaldata.Theserequirementsincludetheneedtoproperlystoreandsecure

personaldatatopreventun-authoriseddisclosureanduse.

Andifyoufailtomeettheserequirementsthenthepenal?escanbehuge.Thisincludesupto€20M

or4%ofglobalturnoverinfines.Yes,4%ofglobalturnover–whichcouldbemassive–thinkabout

mul?-na?onalbusinessessuchaslargebanks!ThisiswhyindustrywillcareaboutGDPRbecause(a)

it’sbecomingthelawand(b)notfollowingtherulescouldbeverycostly.

hUps://ico.org.uk/for-organisa?ons/data-protec?on-reform/overview-of-the-gdpr/

hUp://www.out-law.com/en/ar?cles/2016/may/gdpr-poten?al-fines-for-data-security-breaches-

more-severe-for-data-controllers-than-processors-says-expert/

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Forthisreason,es?matesarethattherewillneedtobealotofDataProtec?onOfficers–DPOs–to

supportthecorrectimplementa?onandgovernanceofGDPRbyanorganisa?on.That’s75,000

officers–thatdoesn’tincludethepeoplewho’llbeexecu?ngGDPRonadaytodaybasisletaloneall

thepeoplecrea?ngpersonaldatainthefirstplace.Alotofpeopleinalotofindustrieswithalotof

money.Surelyanopportunityforthe‘powerofmany’.

hUps://iapp.org/news/a/study-gdprs-global-reach-to-require-at-least-75000-dpos-worldwide/

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Andthat’sindeedthecase.Whilstini?alaUen?onwilllikelybemostlyondataconfiden?alityand

preven?ngdatabreaches,whichaMeralliswhatwilltriggerthebigfines,theGDPRalsoaffordsaset

ofrightstoindividuals.Therighttoaccessyourdataandtherighttohaveyourdataarejusttwoof

these.

TheserightswillbegevngaUen?ontoofromorganisa?ons,theirDPOs,andtheirsuppliers.

Iwanttohighlightonerightinpar?cular.Therighttodataportability.

ThissaysthatasanindividualIhavetherighttoaccessmypersonaldataasheldbyanorganisa?on

andIshouldexpectittobegiventomeinaformthatiseasynotjustformetouseandunderstand

butisalsomachinereadableandcanbetransferredtootherorganisa?onswhoneedtoprocessit.

AsshownhereonanextractfromTheInforma?onCommissioner’sOfficewebsite,thisrequiresthe

useofopen,commonlyusedandmachinereadableformats.

hUps://ico.org.uk/for-organisa?ons/data-protec?on-reform/overview-of-the-gdpr/individuals-rights/

the-right-to-data-portability/

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Guesswhat?Weknowhowtodothatinthedigitalpreserva?oncommunity.Wehavetoolsforfile

formatiden?fica?on,conversionandvalida?on.Wehavemetadatastandardsforinteroperabilityand

exchange.Wehavejustthesortofknowledgeandexperiencethatpeopleneedtosupportthispart

ofGDPR.

Ifweworkedwiththosepeopleimplemen?ngGDPRincludingthevendorsofthesoMwareand

systemsthatthey’lluse,thenwecouldseeautomatedandembeddeddigitalpreserva?ontoolsand

techniquesbeingusedtosolvetheimmediatebusinessproblemofbeingreadyforGDPR.

WecouldhelpsavebigbusinessesalotofmoneyandwecouldhelpthembebeUerpreparedandwe

couldhelpthishappensooner.

Thebenefitsthenflowdownstreamtothoseresponsibleforthelong-termreten?onofthatdata.If

youindulgeyourselvesabit,thenyoucanimagineaworldwhereyoumightbeanarchivistorrecords

managerinalargebankorotherbigorganisa?onandthestuffcomingatyouforlong-termreten?on

isalreadyinapreserva?onreadyformat.Noneedforlarge-scalere-guardac?ons.Nostrugglinglots

ofunknownformattypes.Surelythatwouldbeagoodplacetobe?

hUp://openpreserva?on.org/technology/products/fido/

hUps://www.archivema?ca.org/en/

hUp://verapdf.org/

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ThenextexampleIwantedtouseisDigitalPathologyandGene?cSequencing.

Theuseofdigitaltechnologiesistransformingclinicaldiagnosisinhealthcare.Benefitsincludefaster

turn-round?mesfrompathologylabs,theabilityforgenomicstoiden?fycancersorrarediseaseswith

greaterprecisionandhencedrivemuchmoretargetedtreatments,andtheabilitytosharepathology

databetweenorganisa?onssothatawidersetofspecialistscanbebroughttobearonagivenpa?ent

andtheircondi?on.

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Theproblemisthatthesenewdisrup?vetechnologiesaregenera?nganunprecedentedamountof

data.

Ifyoulookatthefallincostforsequencingawholehumangenomethenit’sdroppedbyafactorof

morethan10,000overthelast10years.

Thismeanswholegenomesequencingisnowaffordableonapopula?onscaleandisonthevergeof

beingpartofrou?nehealthcare.Youcannowsequenceafullhumangenomeforapproximately

$1000.

We’renowgevngveryclosetothepointwherewholegenomesequencingisadoptedinclinical

prac?ceandrou?nelyappliedtothosevisi?nghospital.We’retalkingonlyafewyearsaway,not

decades.

hUps://www.genome.gov/sequencingcostsdata/

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Youcanseethepoten?alwhenyoulookattheUK’s100,000genomeproject.Thewholegenomeof

70,000pa?entsandtheirfamilymembersisbeingsequencedforarangeofcancersandrarediseases.

Thisiscrea?nganenormousdatasetthatscien?stscanusetobeUerunderstandthecauseofthese

diseasesandhowbesttotreatpeopleatanindividuallevel.

Thedatasetwilltop20PBofdataandthat’sjustfor100,000genomes.Imagingscalingthisuptothe

wholepopula?on.

TherearealreadysomepreUybasicchallengestoaddressinstoringthisdataandthenmakingit

accessibleforuse,letalonewhat’scomingdownthetracks.

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Forthe100,000genomeprojectit’snotsomuchofaproblem–theyhaveadedicatedteamand

infrastructurebuiltfromthegrounduptoaddressdataatthisscale.

What’smuchtougheriscopingwiththisdatavolumeintheNHS.Thedatavolumesalreadybeing

generatedbygenomicsandpathologydataisalreadyoutstrippingthecapacityofNHShospital

infrastructures.TheNHSalreadyspends$3BnayearonIT.

Forgetaboutthefactthatthedatahasvaluetothepa?entandinsomecasestheirchildrentoo,which

meanskeepingitfordecades,theproblemishereandnow.

First,howtostorethisstuffatscaleandatalowenoughcost–whilstmaintainingagoodlevelofdata

safety.

Second,howtoprovideaccessacrosshealthcareorganisa?onsinasecureandmanagedway.

Lotsofdata,bigfiles,contentthatdoesn’tchange,largescalelowcoststorage,providingaccesstoa

designatedcommunityinacontrolledway.Soundfamiliar?

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Guesswhat?Weknowhowtodothatinthedigitalpreserva?oncommunity.

Weknowhowtobuildlargescaledatastoragesystemsthatkeepdatasafeforthelong-term.Weknowhowtoanalysecostsandrisks.

Wehowtobalancesafety,securityandeaseofaccessinstoragesolu?ons.

Weknowhowtoimplementstoragethatmakesmul?plecopiesofthedata,storesthemindifferentloca?ons,migratesmediaandchecksforcorrup?on.

Weknowhowtoprovideaccesstodatatoadesignatedsetofusers–it’scalledatrusteddigitalrepository..

There’salotthatthepreserva?oncommunityhastooffer.

Buttheimportantpointisthatwhatwehaveissomethingthatcanbeappliedtotheimmediateandpressingproblemofdata

storageandhowtokeepthecostsdown.It’snotabouttryingtoconvincetheNHSofthelong-termbenefitsofdigitalpreserva?on–it’sactuallyaboutsolvingtheshorttermpainofstorageoverloadandun-manageablebudgets.Andifwehelp

theNHScrackthatusingdigitalpreserva?ontechniquesandtechnologiesthenthegoodnewsisthatwe’llhelptosolvethe

long-termproblemaspartoftheprocess.

ThisiswhatImeanbyusingdigitalpreserva?ontotackleimmediatebusinessproblemsanddosoinawaythatsavesmoney.The‘powerofmany’inthiscaseisgevngoneofthelargestorganisa?onsintheworldtomakeuseofandbenefitfromdigital

preserva?on.This‘powerofmany’isthenfurtheramplifiedbythewholepopula?onhavingadeepandvestedinterestintheir

databeingheldsafelyandsecurely.

Thebenefitsthenflowdownstreamtothosewithlong-termresponsibilityforthatdata.Imagineyou’reinaNHShospitalresponsibleforrecordsmanagementandlong-termreten?onofpa?entdataandthatallthegenomicsdatageneratedorstored

byyourhospitalwasheldonpreserva?on-gradestoragefromdayone.Nomoretryingtowrangledatafrommul?pleservers

andUSBdrives.Nomoreworryingaboutdataloss.Everythingstoredwithchecksumswithmul?plecopies–thatwouldbenice!

hUp://dpn.org/

hUps://www.lockss.org/

hUp://www.arkivum.com/hUp://4cproject.eu/

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Con?nuingwiththemedicaltheme,IwanttolooknextatdrugtrialsbyPharmaceu?calcompanies.

Ittakesonaverage$2.5Bntobringanewprescrip?ondrugtomarketaspartofaprocessthattakes

morethanadecade.

Partofthatprocessincludesclinicaltrialsatvariousstagestotesttheirefficacy,i.e.whetherthey

workornot,andtheirsafety,e.g.whethertheyhaveanynastysideeffects.

hUps://www.scien?ficamerican.com/ar?cle/cost-to-develop-new-pharmaceu?cal-drug-now-

exceeds-2-5b/

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Asyoucanimagine,drugtrialsareahighlyregulatedareaandsubmissionshavetobemadeto

regulatorybodiessuchastheFDAtoprovidedetailedrecordsofatrialanditsresults.

Thereiscurrentlyatransforma?onhappeningwhichisseeingoldpaper-baseddrugtrialsubmissions

beingreplacedwithnewelectronicversions.

AdrugtrialisdocumentedinwhatiscalledaTrialMasterFile.Thisisbasicallyaverylargecollec?on

ofPDFdocumentsthatisassembledtodocumentthetrialandallthetestsdoneonthepar?cipantsin

thetrial.

hUps://tmfrefmodel.com/

hUp://www.appliedclinicaltrialsonline.com/tmf-reference-model-standard-process-efficiency

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Asyoucanimagine,theregulatorsimposestringentrequirementsonhowdrugtrialsareperformed

andthehandlingoftherecordsofthetrial.

Theserequirementsincludealltheusualaspectsofrecordsmanagementplussomedigital

preserva?onrelatedrequirements,forexampletheongoingreadabilityanduseabilityofdrugtrial

documenta?on.Theserequirementslastforthelife?meofthedrugonmarketandthensome,i.e.

mul?pledecades.

Nots?ckingtothesestandardscanbeverycostly–afailuretoproducethedocumentaryevidence

couldresultinadrughavingtobetakenoffmarketandthelossofrevenuefromthatcouldbebillions.

Andthat’snotincludingthemoreimportantconcernsofprotec?ngthehealthandwellbeingofthe

publicfromdrugsthathaven’tbeentestedproperlyoraresubsequentlyfoundtohaveproblems.

Addressingthesechallengesisanaturalplacetotargetdigitalpreserva?on.

Butthat’snotactuallythescenariothatIwanttotalkabout.

hUps://www.gov.uk/government/organisa?ons/medicines-and-healthcare-products-regulatory-

agency

hUp://www.fda.gov/

hUp://www.ema.europa.eu/ema/

hUp://www.ich.org/home.html

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WhereIthinkthereisanopportunitytoaddressamoreimmediateproblemisinthewaythatdrug

trialinforma?oniscollectedandtransferredbetweenorganisa?ons.

WhathappensinadrugtrialisthataPharmacompanywilltypicallyrecruitoneormoreContract

ResearchOrganisa?onstoconductthetrial.TheseCROsthenworkwithhospitalsanddoctorsto

recruitpar?cipantstotakepartinthetrials.Thedocumenta?onisassembledandfedbackupthe

chainul?matelybacktothepharmacompanywhohassponsoredthework.

Whilstthereareformatsandsystemsforcrea?ngandstoringTrialMasterFileswithintheCROor

pharmaorganisa?on,thereisn’tacommonlyagreedwaytotransferthesebetweenorganisa?ons.

Giventhatadrugtrialcanlastyearsandcontain100,000documents,therobustexchangeofTMF

contentbetweenorganisa?onsbecomesimportant.

Currently,workisunderwaytolookatstandardisingtheexchangeofTMFcontent.

hUps://tmfrefmodel.files.wordpress.com/2016/10/roadmap-2016.pdf

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Guesswhat?Wecandothat.

Wehavestandardsformetadataandhowtoexchangeitinarobustwaybetweenorganisa?ons.It’scalledMETS.

Wehavewaysofbaggingupandtransferringdocumentsandmetadatafileswiththeabilitytocheckthatnothinghasbeen

corruptedorlostintheprocess.It’scalledBagIt.

Wehavewaysofdescribingeventsforthecrea?onandtransferofcontent.It’scalledPremis.

WehaveallthecomponentsneededbythePharmaindustrytounderpinrobustandstandardisedtransferofclinicaltrialdocumenta?onbetweenorganisa?ons.

Thisknow-howandtechnologycouldsolveanimmediateprobleminthepharmaindustry.Therearesubstan?alcostsavingsfrombothnotre-inven?ngthewheelandstar?ngoutwithasolidsolu?onfromtheoutset.

The‘powerofmany’effectcomesfromthelargenumberofpeopleandbigorganisa?onsinvolvedindrugtrials–plustheverylargebudgetsatstake.Smallchangesthatimproveandspeed-uptheprocesscanhaveahugeeffect–gevngadrugtomarket

earlierisworthsomethinglike£1Mperdaytoapharmacompany.

Thebenefitsthenflowdownstreamtothosewithlong-termresponsibilityforthatdata.Imagineyouareanarchivemanagerat

apharmacompanyandallthedrugtrialrecordsyouwereresponsibleforkeepingcamereadypackedinPREMISandMETSandhadafullsetofchecksums!

hUp://www.loc.gov/standards/premis/

hUp://www.loc.gov/standards/mets/

hUps://tools.iex.org/html/draM-kunze-bagit-14

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Onefinalexample.This?mefinancialmarkets.

WhenyouthinkoffinancialmarketsyouoMenthinkoffuriousac?vityonatradingfloorfullofpeople

inblazersshou?ngateachother.Orpeoplebehindhugebanksofscreenswithtelephonesjammed

againsteachyear.

Butinrealitytherearealotpeopleinalotofbanksandotherfinancialorganisa?onswhoaresat

behinddesksandmaketradesday-inday-outwhenmanagingfundsandprovidinginvestmentservices

totheirclients.

Forexample,ontheLondonStockExchange,thereare1milliontradesperdaycrea?ngadaily

turnoverofover$5Bn.

hUp://www.londonstockexchange.com/exchange/sta?s?cs/daily-trading/daily-trading.html

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Asyouwouldexpectfinancialmarketsandtradingareheavilyregulated,forexampledrivenbythe

eventsthatleadtothemarketcrashin2007.

TheEUhascreatedsomethingcalledMiFIDII,whichisthesecondversionoftheMarketsinFinancial

InstrumentsDirec?ve.

Thisputsaloadofregula?onsinplaceincludingthatanyformofcommunica?onthatcouldleadtoa

tradeshouldberecordedandretainedfor5-7years.It’snotjustrecordingthefinaldecisiontomake

atradebutincludeseverythingintherun-upthatcouldhaveleadtoatrade,soforprac?calpurposes

thismeansrecordingpreUymucheverything.

hUps://www.fca.org.uk/markets/mifid-ii

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Recordingmeanstelephonecalls,emails,instantmessagingoverchannelssuchasBloomberg,and

morerecentlythingslikeSkypeforBusiness.There’salotofchannelsthatneedtobecaptured.

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Theproblemisthatmuchofthisinforma?onisinsilos,e.g.proprietaryvoicecallrecordingsoMware

andformats.

Muchoftheinforma?onisaudio.Alargefinancialins?tu?oncangenerate100,000callrecordings

eachday.

Theproblemisthatfinancialorganisa?onsnowneedtoextractalltheseaudiofilesandothertypesof

mediafromtheirvarioussystemsandstoretheminasuchawaythattheyhaveconfidencethat

nothinghasgonemissingandtheycanaccessandusethefileswhenevertheyneedto.There’salot

ofsystemstocapturecontentfromandalotoffileformatstodealwith.

Basicallyfinancialins?tu?onsneedtocreateandmanagetheirownAVarchives.Butintheircaseit’s

sotheycansa?sfyimmediatecompliancerequirements–there’saveryshortwindowof?mefor

makingsurecallrecordingsaresafelystored–youcanconsideritasarchivingatthepointatwhich

dataiscreated.Anydelaysresultsinincreasedriskofnon-complianceandabacklogofcontentto

handlethatcanbuildupveryquickly.

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Guesswhat?Inthedigitalpreserva?oncommunityweknowhowtobuildbigAVarchivesandpreserveaudiovisualformats.

Weknowaboutcodecsandwrappersandhowtonormaliseandconvertfiles.

Weknowthebenefitsofusingasmallhandfulof‘pivot’formatsthatuseopenspecifica?onsandhowthissavesthepainof

havingtomanageaprolifera?onofproprietaryformatsthatcomefromlegacysystems.

WeknowthecostsavingsoftakinganautomatedfactoryapproachtolargeAVcollec?ons–it’s50%cheaper.

Allthiscanbeappliedtothehugevolumesofstuffthatbanksandotherfinancialins?tu?onsarenowgoingtohavetocollectandmanage.Itcanbeappliedinawaythathelpswiththeimmediateproblemofanorganisa?onknowingup-frontthatit’s

compliantanddoingsoinawaythatisfasterandcheaperthancurrentapproaches.

The‘powerofmany’comesintoplaybecausetherearealotofpeoplewhocareaboutcompliance,informa?ongovernanceand

li?ga?onreadinessinfinancialins?tu?ons–it’sbigmoneyandinvolveswholeteamsofpeople.

ButaswiththeothercasesI’veshown,thebenefitsalsoflowdownstreamtothoseresponsibleforthelong-termreten?onof

thatdata.Imagineyou’reanarchivistorrecordsmanagerinafinancialins?tu?onandhaveresponsibilityforlong-termreten?onandaccesstorecordingsandotherevidenceunderMiFID.Lifewouldbealoteasierifthoserecordingswerealreadya

minimalsetofopenformats.

hUp://dx.doi.org/10.7207/twr12-01

hUp://www.iasa-web.org/tc04/audio-preserva?onhUps://www.ffmpeg.org/

hUp://www.videolan.org/vlc/index.html

hUps://mediaarea.net/MediaConch/hUps://www.prestocentre.org/

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Inthistalk,I’vearguedthatdigitalpreserva?ontoolsandtechniquescanbeapplied‘upstream’intheworldwherecontentisfirstcreatedandhasthepoten?altobeusedtosolveawiderangeofcurrentandpressingproblems.

I’vegivenjustafewexamplesthatI’vecomeacrossandthereareforsuregoingtobemanymore.

Butinordertobesuccessful,I’vealsotriedtoshowthatthreethingsareneeded.

1.  Preserva?ontechniquesneedtobeappliedtoaproblemthatneedsanimmediatesolu?onandprovidesanimmediatebenefit.Thisisn’ttosaythatdigitalpreserva?onisn’talsoneededintheconven?onalsenseofhelpingtoensuredigital

contentisaccessibleandusableinthefuture,ratherthattherearesomeproblemsinthe‘hereandnow’thatareoMenalotmorepressingandmeanthere’sfarmorelikelytobeinterestfromanorganisa?onortheirsuppliers.

2.  Preserva?ontechniquesneedtohelpreducecosts–whichincludessaving?measwellasmoney.It’snotenoughtoshowthatthere’sabenefitifitcan’tbeachievedatalowercost.Thisissimplyaboutremovingtrade-offsandmakingthe

decision‘easy’–iftheapplica?onofdigitalpreserva?onresultsinanimmediateproblembeingsolvedandatalowercost

thenit’skindofano-brainer.

3.  Preserva?ontechniquesneedtobeintegratedandautomated-thisisactuallyjustanotheraspectofloweringthecosts.Thereneedstobenoextrabarriersinplace,nohurdlestojump,noextraprocessesandprocedurestofollow.People

needdigitalpreserva?ontoworkforthemautoma?callyinthebackground–almostasifitwasn’tthereatall.

Andifthesethingscanbeachievedthenthere’sagoodchanceofdigitalpreserva?ongevngitsfootinalotmoredoorsand

mostimportantlyinindustrieswheretherearealotofpeoplewhowouldbeineffectusingdigitalpreserva?ononadailybasis–eveniftheydidn’tknowitbythatname.

Theresultshouldalsobenefitallofus.Therewouldbemoreinvestmentintoandsustainabilityofsomeofthetoolsandtechniquesthatweallrelyupon.DigitalcontentwouldalsobeinalotbeUershapewhenitdoesmakeittoarchivists,records

managersandothersresponsibleforitslongtermpreserva?on.

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Andthatbringsmetotheendofthetalk.I’llfinishwithoneofmyfavouritequotes,wellactuallyan

Africanproverb“ifyouwanttogofastthengoalone,butifyouwanttogofarthengotogether”.This

iswhereIthinkweareinthedigitalpreserva?oncommunity–wehavetheopportunitytogetalot

morepeopleusingdigitalpreserva?ontechniquesandtoolsandthroughthe‘powerofmany’wehave

theopportunitytogoalotfurtherasaresult.

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