consumer involvement pack · contributions are inestimable.” (consumer) if you get involved in...

Consumer Involvement PackHow to get involved in health

and medical research

Consumer Information Pack v1 dated 18/09/19Adapted from Patient Information Pack (PIP2) 2018 with permission from INVOLVE (UK)This resource is from the Consumer Involvement and Engagement Toolkit at www.involvementtoolkit.clinicaltrialsalliance.org.au 01

These Frequently Asked Questions (FAQs) are answered on the following pages:

1. What is consumer involvement in research? 2

2. What can I contribute to research? 3

3. Have I got the right experience to be involved? 5

4. WhatdifferencewillImake? 6

5. WhatwillIbeexpectedtodo? 9

6. WhatcanIexpectofthepeoplewhoinvolvemeintheirwork? 10

7. WhatadvicecanyougivemeforwhenIfirstgetinvolved? 12

8. Whydoresearcherswanttoinvolveconsumersintheirresearch? 15

9. WhattrainingandsupportmightIbeoffered? 17

10. HowwillIbenefitfrombeinginvolved? 18

11. Whydopeoplegetinvolvedinresearch? 19

12. WherecanIfindoutmore? 20

Contents


1. What is consumer involvement?

Consumerandcommunityinvolvementiswherepatients,carers,andotherpeoplewhousehealthcareservices,activelyworkwithresearchersandresearchorganisationstohelpshapedecisionsabouthealthresearchpriorities,policyandpractice.

Thisinformationpackfocusesonconsumerandcommunityinvolvementinclinicalresearch.Clinicalresearchisthestudyofhealthandillnessinpeople.Clinicaltrialsareonetypeofclinicalresearchandgivehealthprofessionalsevidenceofwhattreatmentsworkbest.Everyyear,manythousandsofAustralianstakepartinclinicaltrialsandothertypesofclinicalstudyandthefindingsfromthesestudiesallowconsumersandhealthprofessionalstomakebetterdecisionsabouttreatments,care,andservices.

“Whenitcomestoourhealth,Icannotunderstatetheimportanceofthestatement…nothingaboutuswithoutus”(Consumer)

Whenconsumersandthecommunitygetinvolvedinclinicalresearch,theyworkalongsideresearcherstohelpmakedecisionsaboutwhatresearchgetsdone,howresearchgetsdoneandhowtheresultsaresharedandusedinpractice.Consumerinvolvementisnotthesameastakingpartinresearch.It’snot,forexample,aboutbeingthepersonwhotakesanewdruginaclinicaltrial.It’saboutconsumersandresearchersworkingtogetherto design and run studies.

Bygettinginvolvedinresearch,youcanhelpmakeresearchmorerelevantandusefultobothconsumersandthecommunity.Youcanstopmoneybeingwastedonresearchthatdoesn’tactuallyhelppeople.Byworkingwithresearchersorresearchorganisations,youwillimproveresearchandthereforemakeadifferenceinthewayhealthcareisprovidedinthefuture.

“Researchhasalwaysseemedtobeamystery,onlycarriedoutbyverycleverpeople.WhatIknownow,isthatit’saverynormalprocessandeveryoneshouldhaveasayinwhatgoeson,becauseresearchaffectsourlives.Theinformationthatcomesoutfromresearchimpactsonme,soformetohaveasayinit,isanecessaryprocess.”(Consumer)

“Wehaveavestedinteresttoensuregoodqualitystudieswillproduceresultsthatwillultimatelyimprovestandardsofcareandthereforeimprovedpatientoutcomes”.(Consumer)

“Wecanchallengeresearcherstothinkoutsidetheirbox.Wecanaskwhatwemightthinkisanobviousquestion,buttheymightneverhavethoughtofitbefore.Researchisallaboutaskingquestions,andwecanhelpfullychallengeresearchersbyaskingthemquestions.”(Consumer)


2. What can I contribute to research?

Yourownlivedexperience,orthecareofothers,isofgreatvaluetoresearchers.Manyresearchersarehealthcareprofessionalsandwillknowalotabouttreatmentandservices.Theymayalsohavetextbookknowledgeaboutyourcondition,butunlesstheyhavealsolivedthroughit,theremaybegapsintheirunderstanding.Bycontributingyourexperienceandyourviews,youprovidevaluableexpertisethatwouldotherwisebemissing.

“Clinicaltrialsexistforthebenefitofpatients.Werepresenttheirinterests,therefore,ourcontributionsareinestimable.”(Consumer)

Ifyougetinvolvedinresearch,youwillnotbeexpectedtohavetechnicalknowledgeofhowresearchworks.Youwillbesupportedtoundertakeyourrole,forexample,bybeinggiventrainingontheresearchprocessandbackgroundinformationontheprojectyouareinvolvedwith.Theimportantknowledgeyoualreadyhave–yourexperienceoflivingwithanillnessordisabilityor,usingservicesorlookingaftersomeoneelse.Thisknowledgeiswhat’suniqueaboutyourcontributiontotheresearchteam.

“You’rethemostexperiencedpersononwhat’shappenedtoyouandthatexperiencecanreallyhelpresearch.Youdon’tneedtotrytospeakonbehalfofallpatients,justgiveyouropinionbasedonwhatyouknow.”(Consumer)

“Weensurethatresearchisappropriateandalignedwiththewishesandprioritiesofthoseatthecentreoftheresearch.”(Consumer)

“Atfirst,itwasintimidatingsittinginaroomfullofeminentdoctors.IwonderedwhetherIcouldcontributeanything.Buttheystartedaskingmequestionslike…’doyouthinkpatientswillwanttodothis?’or,‘whatdoyouthinkfromapatient’sperspective?’.Iknewthenthatmybeingtherewasuseful.”(Consumer)

“Don’t,foroneminute,thinkyouneedtohaveasciencebackgroundtobeaconsumerrepresentative.Ifyouareaskedtoreviewdocumentsthatwillbegiventopatientstakingpartinastudy,thewholepointis,ifyoudon’tunderstandthetechnicallanguageused,norwillthey…that’sincrediblyusefulfeedback!”(Consumer)


What was your motivation for getting involved in research?HavingspentmostofmyworkinglifeinprimaryandsecondaryindustryIwasfullyawareofthebenefitsinresearch–whenlookingatmedicalresearchfewofuswouldbeheretodaybutforresearchovertheyears.Welostadaughtertometastaticbreastcancerandin2005Iwasdiagnosedwithrectalcancer.Followingsuccessfulsurgeryandchemotherapy,IlaterhadtheopportunitytojointheAGITGCAPwhenitformedin2008–Ijumpedattheopportunitytomakeacontribution.

What studies have you been involved in?TheAGITGopenssome3–4newcollaborativetrialseachyearandeachofthesetrialsrequiresendorsementfromtheCAP–soduringmytimeontheCAP,wewouldhavebeeninvolvedinsome30orsotrials.Inoneoftheearlytrials,Iwasaninvestigator-Ihavebeenanassociateinvestigatoronseveralothers.

How did you feel when you first got involved?Theinaugural10-memberCAPinvolvedcolorectalcancerpatients/survivorsanditwasgreattoexchangeourlivedexperiencesbothwithfellowCAPmembers,AGITGstaffandDirectors.AsaCAPmember,IcertainlyfeltpartofateamthatwishedtocontributetoGastrointestinal(GI)cancerresearchandclearlyunderstoodthattheAGITGlookedforwardtoandvaluedtheinputwhichconsumerscouldmake.

How is it now you have been involved for a few years?Ihavenowbeeninvolvedwiththisresearchgroupforovertenyears.Ihavewitnessedourtrials(alongwithmanyothers)improvepatientoutcomesandqualityoflife.Ihavefoundthattheknowledgegapswhichweseektoresolveviaresearchareusuallycommonbetweenbothresearchersandconsumers.Manynewtreatments

and drugs have become available – indeed the treatment regimeIreceivedbackin2005hasbeensignificantlychanged through research.

Has anything surprised you about being involved in research?Iamamazedatthepassionwhichresearcherscontinuallydisplayinseekingtofindwaysandmeansanddrugsandtreatmentswhichwillimprovethequalityoflifeandoutcomesforpatients.Theamountoftimewhichmanyresearchersvolunteerpro-bonotoproposeresearchhypothesesanddevelopresearchapplicationsissomethingwhichthegeneralpopulationdoesnotappreciateorunderstand.In2015theAGITG,whichcomprisesover1,300members,primarilyclinicians,introducedanAnnualAwardforExcellenceinAGITGResearch–astheproudrecipientofthisinauguralawarditexhibitedtomethebenefitswhichconsumerscananddo bring to clinical research.

What would you say to people who are new to getting involved?Donotbeafraidordaunted.MostresearchersandresearchorganisationsIknowwelcomeconsumersintotheirteamorprojectastheconsumerinvariablybringssomeliveduniqueexperiencesaswellasanon-clinicalsetofeyes.Thereisplentyofmentoringandtrainingavailableandthroughaskingquestionsandwiththeexperienceoftimeyourinputandcontributionwillimprove.

Dan’s story of involvementRetired Manager. Former Chair Australasian Gastrointestinal Trials Group (AGITG) – Consumer Advisory Panel (CAP). Currently Director AGITG.


3. Have I got the right experience to be involved?

Therearemanydifferenttypesofresearchlookingathundredsofdifferenttopics.Researchersarelikelytowanttoheartheviewsofarangeofpeoplefromavarietyofbackgrounds.Thismeansyourexperiencemightbemorerelevantforsomeprojectsthanforothers.It’saboutfindingtheprojectsthatneedinputfrompeoplelikeyouandrolesthatmatchyourinterestsandexperience.

Forexample:l Researchersworkingonanewinsulinpumpforpregnantwomenwithdiabeteswantedtoworkwith

diabeticwomenwhohadrecentlyhadchildren.l Researcherslookingattheimpactofhospitalstaffinglevelsoncarewantedtoinvolveanyonewitharecent

experienceofhospitalservices.Theywantedtoheartheviewsofpeoplewhohadbeeninpatientsoroutpatientsorhadreceivedemergencycare,aswellaspeoplewhohadbeencaringforarelativeorfriendin hospital.

l Researchersdevelopinganewscreeningtestforlungcancerwantedtoinvolvecommunitymembers(notpatients),whoweresmokersandex-smokers,tocontributetheirviewsontheresearch.

l Researchersworkingonaprojecttoimprovethehealthofpeoplelivingindamphousingwantedtoinvolvepeoplefromalocalcommunitywheretherewerelotsofproblemswithdamphousing.Thesepeopleweren’tpatients,buttheyhadexperiencethatwasrelevanttotheresearch.

“Don’tbedisappointedifyouputyourselfforwardforarolebutarenotchosen.Itmaybebecausetheresearcherhasalreadyfoundsomeonewithasimilarbackgroundtoyou.Theymightneedtofindsomeonewithadifferentbackgroundorculturetogetaswidearangeoffeedbackandopinionaspossible”.(Researcher)

Youdon’thavetohaveanykindofqualificationtobeinvolvedinresearch.Butyoumayhaveskillsfromotherpartsofyourlifethatwillbevaluabletoresearchers,fromworking,volunteeringorfamilylife.Thecombinationoftheseskillsandyourknowledgeandexperience,mightmakeyoutheidealpersonforaninvolvementrole.Forexample,inaresearchprojectinvolvingwomenwithovariancancer,oneofthewomendrewonherskillsinorganisingeventstohelpplanafinalworkshopforpatients.Shewasn’tjustavolunteerprovidinganextrapairofhandsontheteam.Sheusedherexperienceasapatientaswellasherorganisationalskillstohelpplantheworkshop.Sheensureditwaseasyforwomenwithovariancancertoattend,andthattheworkshopwouldcoverwhatotherpatientswouldmostwanttohearabout.


4. What difference will I make?

Youcanmakeadifferenceatanyandeverystageofresearch.Yourcontributionwillhelpshapethethinkingbehindtheresearchandtheplanninganddeliveryoftheproject.Youhaveapowerfulvoicethatcanalsoinfluenceothersbeyondtheresearchteam,includingthepeoplewhotakepartintheresearchandthepeoplewhousetheresults.Sometimesit’sthecontributionsfromconsumersthatdetermineswhetheraprojectgetsfunded,whetheritrunssuccessfullyandwhethertheresultschangepractice.

Thefollowingaresomeofthedifferentwaysyoucouldhelpresearchers,aswellasexamplesofhowconsumersandcarershavemadeadifferenceinpreviousresearchprojects.

You could help research by:

Giving researchers new ideas for research

Acarerworkingwithresearchersonaprojectaboutsupportforcarersidentifiedagroupof‘hidden’carersthattheresearchershadnotknownabout.Theresearchershadonlybeenthinkingaboutcarersofpeoplewithadisability,orpeoplewithmentalhealthproblems.Thecarerinvolvedhadlookedafterherhusbandwhenhehadheartdiseasebuthadn’tidentifiedherselfasacareratthetime.Sharingherexperienceledtoanewprojecttolookatsupportservicesforthisgroup.

Making sure researchers work on the most important questions

Whileworkingonaprojectwithagroupofwomenwhohadexperienceddomesticabuse,researchersdiscussedanumberofideasaboutwhattoresearchnext.ThewomensaidresearchonhowGPscouldbetteridentify,andsupportchildrenaffectedbydomesticviolencewasahighpriorityforthem.Thisinfluencedtheresearchers’decisionaboutwhichprojecttoworkonnext.

Helping to write a funding bid

Researcherswantedtoworkonaprojecttoassesstheevidenceastowhetherpeoplewhohavedifferentbloodpressuremeasurementsineacharmareatgreaterriskofheartdiseaseorstrokethanpeoplewhosebloodpressureisthesameinbotharms.Theyinvolvedconsumersinwritingtheirapplicationforfunding.Thefeedbackfromthemmadetheapplicationeasiertounderstandbyimprovingthewayitwaswritten,andhelpedtheresearcherstomoreclearlydescribethegroupofpeoplewhowould beaffected.

Helping funders to decide which projects are worth funding

AgroupofpeoplewithMultipleSclerosis(MS)reviewedanapplicationforfundingforatrialofanewexerciseprogramforpeoplewithMS.TheyrejectedtheapplicationbecausetheprogramwastargetedatpeoplewithmildMS.ThepatientsexplainedthatpeoplewithmildMScanusuallygotoagym.It’sthepeoplewithsevereMS,whomaybeinawheelchair,whofinditdifficulttoknowhowbesttoexerciseandwheretogo.Theysuggestedthatitwouldbebettertofundresearchthatfocusedthepeoplewhoaremoreseverelyaffected.

Making sure research focuses on the most important outcomes

Inastudytoimprovethecareofprematurebabies,theresearchersassumedthatparentswouldbeworriedabouthowlongtheirchildhadtostayinaspecialisedunitfarfromhome.However,theparentsexplainedtheyweremoreworriedaboutdelaystotheirchildreturningtoalocalhospitalbecauseoflackoftransportoranavailablebed.So,aswellasmeasuringthelengthofstayinspecialisedcare,theresearchersalsomeasuredthesedelaysintransfer,toseeiftheirresearchidentifiedwaystoreducethem.


Inspiring and motivating researchers

Researcherswhomeetconsumersforthefirsttime,oftensaytheyaresurprised to realise that their research means so much to other people. This givesthemthemotivationandenthusiasmtokeepgoing,wheneverthegoinggetstough.Workingwithconsumersremindsthemthattheirworkreallymatterstothepeopletheymostwanttohelp.

Helping to design projects that make it easy to take part

Aresearchprojectbasedinacitycentre,expectedpeoplewithbowelcancertoattendclinicappointmentsat8.30inthemorning.Theconsumersinvolvedintheprojectcommentedthatthiswouldbedifficultandexpensivebecausepeoplewouldbelikelytogetstuckintraffic.Theysuggestedschedulingtheappointments later in the day.

Identifying how best to support people who take part in research

Aresearchprojectlookingattheside-effectsofthedrugsusedtotreatParkinson’sdisease,neededpatientstocometotheclinicfortestsafternottakingtheirmedicineinthemorning.Theconsumersinvolvedintheprojectexplainedthatthiswouldmakeitverydifficultforsomepeopletogetupandgetoutofthehouse.Theresearchers,therefore,providedaprofessionalcarertohelptheparticipantsattendtheclinicappointmentswhileoff their drugs.

Helping to collect the data and working with researchers to make sense of the results

Inaprojectassessingtheproblemofdruguseinprisons,theresearchersinvitedanex-offendertoworkontheirteam.Hehelpedtorecruitprisoninmatestotakepartinfocusgroups.Hehelpedrunthegroupsandtomakesenseofthefindings.Heidentifiedissuesthattheresearchersmightotherwisehave missed.

Making sure that any written materials are clear, easy to understand AND includes the most important information

Agroupofconsumerswithmentalhealthproblemsreviewedabrochurethataresearcherhadwrittentoexplainwhatwouldhappentothepeopletakingpartinherstudy.Thestudyinvolvedtakingscansofthebrainsofpeoplewithexperienceofpsychosis.Theconsumersmadesuggestionsabouthowtoimprovethewordingandthelayouttomakeiteasiertoreadandunderstand.Theleafletexplainedthatmusicwouldbeplayedthroughheadphoneswhilepeoplewereinthescanner.Onepersoninthegroupwithexperienceofpsychosissaidthatifhewasexperiencingparanoiaatthetime,hewould needtoknowexactlywhatpieceofmusicwouldbeplayed,inorderforhim tofeelsafe.

Helping to share the results with people who want to use them

Aconsumerwhowasinvolvedinaresearchprojectaboutsecondarybreastcancer,helpedtopresenttheresultsataconference.Havingtheconsumerspeakseemedto‘electrifytheaudience’.Itcanbeextremelypowerfultoheardirectlyfromthepeoplewhowillbeaffectedbytheresearch.Theyhaveaperspectivethatresearchersdon’talwayshear,andtheycangivearealisticviewonwhethertheresultsaregenuinelyuseful.


How did you become involved in health research?IsawanexpressionofinterestforKidneyDiseasepatientstobeinvolvedinaConsumerAdvisoryBoardforBEAT-CKD.IappliedinAprilof2018andthatishowmyadventure began.

What was your motivation for getting involved in research?Asaruralphysiotherapist/patientIwantedtobeabletorepresentthoseofusinRuralAustraliaandtolearnmore about our disease and be able to share that knowledgewithothersfromthebush.

What studies have you been involved in?MobileexerciseApptoimprovefatigueinpatientsondialysis:anadaptivetrial(M-FIT),SONG-GNstudytowillimprovethevalidity,transparency,usability,andcontributionofresearchrelevanttopatientswithglomerulonephritisandlastlySONGTransplant-Lifeparticipation.

How did you feel when you first got involved?ItwasquiteoverwhelmingasIdidnotknowanyone.

How is it now you have been involved for a few years?Iloveit,somuchsothatIhavecommencedaPhDinmychosen area this year

Has anything surprised you about being involved in research?Howmanyprojectsthattheresearchteamshaveonthegoatonetimeandhowharditistoapplyforfunding–somanyhoopstojumpthrough.

What has been your greatest achievement?PresentingattheInternationalSocietyofNephrology’sGlobalhealthpolicyForuminMelbournein2019.Tobeincludedinthisamazingforumandtohaveanopportunitytosharethepatientvoiceregardingwhat’simportanttouswasjustamazing.

What would you say to people who are new to getting involved?Doit,workoutwhatyouareinterestedinand haveago!

Nicole’s story of involvementPatient Partner Centre for Kidney Research, Co-Chair Consumer Advisory Board BEAT-CKD. Member SONG-GN and SONG-TX life participation working groups. Patient Partner KHA-Cari guidelines group.


5. What will I be expected to do?

Thiswilldependonanumberofthings.Thefollowingarecommonareaswhereconsumersareaskedtosharetheirthoughts:l theresearchers’ideasandplansfortheirresearchl theinformationthathasbeenwrittentopublicisetheproject,ortoinformpeopletakingpart,ortoshare

thefinalresults.

Youmightdothisinanynumberofways,forexampleby:l attendingmeetingswithresearchersl joiningaconsumergrouprunwithinaresearchorganisationandworkingwiththemtogiveyourviewson

differentprojectsl joiningagrouptoadviseonaspecificprojectl becomingamemberofaresearchteaml commentingonwrittendocumentssenttoyoubypostoremail.

Somemeetingsmaybeinperson.Somemaybeheldoverthephoneoronline.Youwilloftenbeabletoworkinawaythatsuitsyoubest,choosingrolesthatmatchyourinterests,experienceandskills.Youcandoasmuchoraslittleasyouwantandcanalwayssay‘no’ifwhat’sbeingaskedofyoufeelstoomuch.

“It’simportantnottodomorethanyouwantto.Beinginvolvedcanbetiring,andyoumighthaveanemotionalreactiontothediscussions.Youneedtosetyourlimits,especiallyifyouaremanagingahealthconditionorhaveotherdemandsonyourtime.”(Consumer)

Overtime,youmaywanttotakeyourinvolvementfurther.Youmightwanttogetinvolvedinactuallydoingtheresearchandhelpingresearcherstomakesenseofthefindings.

Youmightwanttogetinvolvedin:l trainingandrecruitingnewresearchersl presentingresearchresultsatconferencesandworkshopsl writingarticlesforpatientnewslettersandsocialmedial contributingtoarticleswrittenbyresearchers.

Youcangoasfarasyouwantindevelopingyourskillsandexperienceinconsumerinvolvement,workingonsmallorlargeprojects,foronlyafewweeksoroverafewyears.Therecouldbearangeofopportunitiesthatareopentoyou.


6. What can I expect of the people who involve me in their work?

Whenyouworkwithresearchersorresearchorganisationsonanongoingbasis,youshouldexpect:l clearinformationaboutanyinvolvementrole–whatyourresponsibilitieswillbeandwhat’sexpected

ofyoul afairandopenprocessofrecruitmentl agoodworkingrelationshipwiththepeoplewhoinvolveyou,basedonmutualtrustandrespectl regularfeedbackonhowyourinvolvementhasmadeadifferencel accesstoarangeoftrainingandsupporttoenableyoutohaveyoursayl paymentforanyexpensesyouhaveasaresultofyourinvolvementandclearinformationabouthowto

claim your expensesl practicalsupporttomakeyourinvolvementpossible(e.g.,bookingaccessiblevenuesformeetings,providing

paperworkinlargefont,easyparking,payingforchildcareandparkingfees)l apointofcontactwhocanprovideinformationandsupportonrequestl involvementinevaluatinghowwelltheprocesshasworked,andtheimpactoftheworkyouhavedone.

“Onethingthatwasimportantwasthateveryonekneweachother’sgoals–whattheresearchteamexpectedfromme,andwhatIwashopingtogetfrombeinginvolvedintheproject.TheresearcherswerereallygoodatfeedingbackhowIhadhelpedthem.Ithinkthiskeptmemotivated.Theywerealsonotafraidtogivefeedbacktousonaspectsthatwerenotworkingsowell,whichwewerehappyaboutbecauseithelpedthegroupmake‘theinvolvementprocess’better.”(Consumer)

Sometimesresearcherswillofferapaymentasathank-youforyourtimeandcontributionstotheirproject.Thisislikelytobeanhonorariumfeeratherthanasalary.Theamountwilldependontheroleandtypeofresearch.


How did you become involved in health research?AstheFounderofMiracleBabiesFoundation,ImetProfessorWilliamTarnow-Mordiwhowantedtoexplorepartneringinresearch.Researchwasn’tthemainreasonforstartingtheFoundation,thereforeIdidn’treallyunderstandtheneedforparentstobeinvolvedwithtrials.Williamconveyedhowimportantresearchwasforbabiesoutcomesandhowintheneonatalspace,uptakeintotrialswasexceptionallylow.Thismeansthatsometimesittookwaytoolongforresultstobeobtainedandputintopracticemeaningthatbabieslivesandoutcomeswere atrisk.

What was your motivation for getting involved in research?IwantedtocontinuetohelpfamiliesofprematureandsickbabiesinanywayIcould.IknowthatthesuccessoftheMiracleBabiesFoundationanditsfamilyprogramsisbecauseofthecollaborationbetweenhealthstaffandfamilies.Itdidn’ttakelongtorealisethatwecouldalsohelpfamiliesjourneyandoutcomebyassistingandbeingthat parent voice in research.

How did you feel when you first got involved?IwasprobablyalittleunsureofmyroleandwhatIcouldcontributeandifIhadanythingofvaluetooffer.Itwasalsoalittledauntingtobesittingatthetablewithsuchhighlyqualifiedandwell-establishedhealthprofessionalsandresearchers.Iwasreallyfortunatethattheyunderstoodthis,andIfeltaninstantwillingnessandopennesstoworktogether.

How is it now you have been involved for a few years?Nowitfeelsextremelycomfortable.Thewelcomenessandreceptivenessofparentsinresearchcontinuestogrowandwehopetodevelopandnurturethecommunityformoreconsumeradvocatestoenterthespaceandhaveanequallymeaningfulimpact.

Has anything surprised you about being involved in research?Surprisemightnotbetherightword,butIthink,tobehonestIhaveneverbeenmoreinaweofpeopleinmylife.Atconferencesorresearchmeetings,Ioftenfindmyselfwithgoosebumpsthinkingthatalloftheseprofessionalsareworkingformotherslikeme,forfamilieslikemine.Iwisheveryparentofapretermorsickbabyacrossthecountrywasabletositinmyshoesandbeprivytonotonlytheamazingworkinresearchtakingplacebutinthosepeoplebehindthescenes–thedoctors,professors,researchers–andtheirun-waivingdedicationandpassiontomakeourfamiliesandourbabiesoutcomesbetter.Ineverhadanyideaasapatientthehardworkgoingontryingtobetterhealthsothatmyson’sfutureswereguaranteed.

What has been your greatest achievement?BeingthefirstparenttobeinvitedontoaneonataltrialasanAssociateInvestigatorin2012andthenasaChiefInvestigatorin2019,andalsowinningtheinauguralAustralianClinicalTrialsAlliance(ACTA)ConsumerInvolvementAwardforassistinginreceivingawaiverofconsentfortheWHEATTrial.Ithinkthesehavebeenpivotalmomentsandallhaveledtodemonstratingwhatcanbeachievedthroughresearcher/consumercollaboration.

What would you say to people who are new to getting involved?Iwouldsayifyouarereallypassionateaboutusingyourpersonalexperiencetomakeagenuinedifferencetotheexperienceofothersandtheirhealthoutcomes,you’vecometotherightplace.Theultimategoalisthatresearchsimplybecomespartofroutineclinicalcare,andwherepatientsenteringthehospitalsareaskingifthereisanyresearchtheycanbeinvolvedin.Theonlywaytoachievethatisthroughworkingtogether.

Melinda’s story of involvementFounder, Miracle Babies Foundation. Honorary Research Associate, University of Sydney, Medical School. Inaugural Chair, Perinatal Society of Australia & New Zealand’s (PSANZ) Consumer Advisory Panel (CAP).


7. What advice can you give me for when I first get involved?

Thissectionprovidesfurtherdetailsofwhatislikelytobeexpectedofyouandwhatyoucanexpect,when youfirst:l gotomeetingswithresearchersl comment on a research proposal l commentoninformationwrittenforpatients(e.g.,helpwritingplainlanguagesummaries)l joinagroupofpatients,carers,andmembersofthepublic.

Theprecisedetailsmayvaryfromprojecttoproject,andtheresearchersorstaffwillworkwithyoutomakeclearwhatyourroleisandwhattheyexpectfromyou.

Going to meetings with researchersWhenyougotoameetingwithresearchers,theywillbeexpectingyoutocontributeyourviewstothegroupdiscussion.Youmaybesentpaperstoreadinadvanceandgivenalistofthetopicsthatwillbediscussed(theagenda).Doingthisforthefirsttimemayfeeldauntingforsomepeople,especiallyiftheresearchenvironmentisnew.

Itcanbehelpfultobearinmindthat:l researchersarepeopletooandmaybejustasnervousaboutmeetingyouandgettingeverythingrightl everyoneintheroomwillwanttohearwhatyou’vegottosay–yourviewshavevaluel youcandrawonyourexperienceandthatofotherpeopleyouknow–butyouarenotexpectedtospeakon

behalfofallpatients,overallyouarebringingtheconsumerperspectivetothediscussionl it’shelpfultoaskquestions–sometimesthesimplestandmostobviousquestionisexactlywhatneedstobe

askedl youmightnotunderstandwhat’sbeingsaid,especiallyifpeopleareusingjargon–taketheopportunityto

askwhatitmeans,asyou’llbehelpingotherpeopleintheroomtool youmighthavemorefreedomtosaywhatyouthinkthanotherpeopleandthatcanbeverypowerful–you

canopenupdiscussionsthatmightnothavehappenedbeforel therewillbepeopletherewhosejobitistosupportyouandenableyoutohaveyoursay,includingother

patients,carers,membersofthepublic,staffandwhoeverischairingthemeeting.

“Consumerrepresentativesareoftendescribedasthe‘criticalfriend’oftheresearchteam.Thisisexactlyright.Yougettochallengeresearchersbyaskingthemtojustifywhytheywanttodosomething.Sometimesthereisagoodreason,butsometimesthereisnot.Thechangemaymakeiteasierforthestudytobecompletedsuccessfully.”(Consumer)


Commenting on research proposalsWhenyouareaskedtocommentonaresearchproposal,youareverylikelytobegivensupportandguidanceastowhat’sneededfromyou.Theresearchersmayhavespecificquestionstheywanttoaskyou,ortheymayaskforgeneralcomments.Theywillwanttoknowwhethertheresearchisimportantfromyourpointofviewandwhetheritislookingattheoutcomesthatmattermosttopeoplelikeyou.

Sometimesyoumightbeaskedtolookataresearchproposalbyapotentialfunder,suchasacharityorgovernmentfundingbody,tohelpmakedecisionsaboutwhethertheresearchshouldbefunded.Inthiscase,yourfeedbackmighthelpthefunderratherthantheresearcher.

Sometimes,youmightbeaskedwhetheryouthinkaproposalisethicallyacceptable.Inthiscase,yourfeedbackmighthelptheresearcherstoimprovetheirplans,ormightbeusedtoinformanethicscommittee,whichdecideswhethertheresearchcangoahead.

Thistaskincludesdrawingonyourexperiencetothinkabout:l whethertakingpartwillcausepeopleanydistressorharm,andhowthiscouldbeavoidedorreducedtoan

acceptable levell whetherthepracticalarrangementsforparticipantscouldbeimprovedtomakeiteasiertotakepartl whetherthepeopletakingpartmightneedadditionalsupportorcaretomanagethedemandsof

takingpart.

Commenting on information written for consumers and the communityYoumaybeaskedtocommentoninformationthathasbeenwrittenforconsumersandthecommunity, suchas:l informationaboutresearchthat’sunderwaytoletpeopleknowtheresearchishappeningl posters,letters,andarticlesbeingusedtoadvertisetheresearchprojecttopeoplewhomightwant

totakepartl participantinformationsheets–theseexplainwhattakingpartinaresearchprojectwillmeanforthe

participants,sotheycandecidewhethertheywanttodoitl articles,reportsandpressreleasesthatareusedtosharetheresultswithpatientsandthepublicl plain-languagesummaryoftheresearch.

Yourtaskwillbetocommentonwhethertheinformation:l contains all the details that people need to understand the researchl containsallthedetailsthatpotentialparticipantsneedtodecidewhethertheywanttotakepartl iswrittenclearlyandsimplyinawaythatiseasytounderstandl islaidoutinaformatthatisclearandeasytoreadl isproducedinaformatthatisaccessibletothetargetaudience(e.g.,inlargefont,ifthetargetaudienceis

likelytohavevisualproblems).


Joining a group Manyresearchorganisationsarenowsettingupconsumeradvisorygroupstosupportthemacrossawiderangeofresearchprojects,aswellashelpingthemtodeveloptheirownpolicyandpracticeininvolvement.Somegroupsaretopic-specificandinvolvepeoplewhoallhaveexperiencewiththesamecondition.Othersinvolvepeoplewithexperienceofdifferentconditions.Eachorganisationwillrunitsgroupslightlydifferently.Beforeyoujoinagroup,youwillbegiveninformationonthewaythatthegroupworksandaboutotherrelevantlocalorganisationsandnetworks.

Joiningagroupmaynotappealtoeveryone,buttheadvantagesare:l beingabletolearnfrommembersofthegroupwithmoreexperienceofinvolvementl receivingsupportfromyourpeersl beingsupportedandtrainedbystaffl havingsomeonetocontactwhenyouneedhelp.

“Aftermyfirstmeetingwithmygroup,Irememberthinking,‘IsowanttodoTHATagain,itwassuchalaugh!’TheygotalltheworkdoneanditwassuchalovelyenvironmentandIwalkedawayfeelinguplifted.Ididn’tthinkIwouldfeellikethatatall.”(Consumer)


8. Why do researchers want to involve consumers in their research?

WhenresearchersapplyforgrantsfromfundersliketheNationalHealth&MedicalResearchCentre(NHMRC),theymustincludeinformationabouthowtheyhaveinvolvedconsumersandthecommunityindevelopingtheirproposal,aswellashowtheyplantoinvolvethemincarryingouttheirresearch.Thereisnowgoodevidencethatinvolvingconsumersmayimprovethequalityofresearchstudies.Assuch,itisnotsurprisingthatresearchers are very interested in involving consumers in their studies.

Manyresearchersunderstandtheaddedvalueofinvolvement.Theywanttolistenandlearnfromtheirconversationswithconsumerandcommunityrepresentatives.So,theywanttohearwhatyouhavetosayandwilloftenmakechangestotheirideasandplansasaresult.

“Itwasasurprisetomethatwewouldbevaluedasequals–everyacademicIhaveworkedwithhasbeensodowntoearth.”(Consumer)

“Beinginvolvedchangeshowyouthinkaboutresearchers.Weputthemonapedestal,butwhenyousitdownwiththemwithacupoftea,theyarejustlikeyouorI,andtheyareverywillingtolistentoyou.”(Consumer)

However,theremaystillbeasmallnumberofresearcherswhodon’tyetunderstandthevalueofconsumerinvolvement.Whenworkingwiththem,itmayfeelliketheyaresimply‘tickingabox’.Iftheyareopentoyourideas,youmaybeabletochangetheirviewsaboutwhatinvolvementcouldachieve,andworkwiththemtoincreaseyourinfluence.Ifyoufeelyouarenotbeingheard,youcouldspeaktothepersonwholeadsoninvolvement,amemberofstafforanotherresearcher.Youalwayshavetheoptiontopolitelydeclinetobeinvolvedanyfurtherandtoexplainyourreasonswhy.

“Weallknowweshouldbeengagingconsumers,buthowtodoiteffectivelytoavoiditbeingjusttokenismcanbehard.Asresearchers,wealsoneedtobetrained”.(Researcher)


What is your role?Ihavebeenprivilegedforthepast25–30yearstoworkalongsideclinicians,researchersandconsumerstoraiseawarenessofthevalueofinvolvingconsumersandcommunity members in health services and research and supporttheimplementationoftheserolesinsuchareas.

How did you first get involved in research?Myyoungestdaughterwasbornwithspinabifidaandwehadtolearntocopewithanewlifebasedarounddisability,hospitalsandengagingwithmanydifferentdoctors.Duringthattime,Ibecameincreasinglyinterestedinpatientadvocacyandhowresearchinformedhealthcare.

In1994Iwasveryfortunatetohavearoletoestablishthefirst‘ParentAdvocate’positionatWA’sPrincessMargaretHospitalforChildren.Thisroleadvocatedfortheengagementoffamiliesindecisionsaroundservicedelivery.Workinginthisrolegavemeanopportunitytomeetmanyfamiliesjustlikemine–peoplewhowantedtousetheirexperiencestoimprovehealthservices.Istillseesomeofthosebraveparentswhospokeupatatimewhenthepatient‘voice’wasnotalwaysvaluedandamremindedwhyIstillworkinthisarea.

Adecadelater,IhadafantasticopportunitytoworkforTelethonKidsInstituteandTheUniversityofWesternAustralia’sSchoolofPopulationandGlobalHealthastheConsumerAdvocate,whichwasaone-of-a-kindroleinAustralia.

What sort of projects have you done?Duringmy15yearsintheroleastheConsumerAdvocate,I established a consumer and community involvement programthatisnowdeliveredacrossWesternAustralia.I’mproudtosayitisrecognisednationallyandinternationallyasagoodpracticemodel.Amajorachievementofthisinitiativewasthedevelopmentoftrainingworkshopsonimplementingconsumerandcommunityinvolvementinresearch.Thiswasanextremelynervoustimeforme,asIhadn’tdoneanythinglikethisbefore,butmypassionforconsumerinvolvement

andmyabilitytothinkonmyfeetstoodmeingoodstead.Ihavenowfacilitated130workshopsacrossAustraliawithresearchers,cliniciansandconsumers.

AtTelethonKidsIhaveworkedonnumerousprojectswithresearchersandconsumers.OneoutstandingexamplewasworkingwithresearchersandconsumersintheFetalAlcoholSpectrumDisorder(FASD)teamtodevelopresourcesaroundraisingawarenessamonghealthprofessionalsintheidentificationandcareforpatientswithFASD.Inaddition,wefacilitatedcommunityeventstohearaboutissuesregardinginformationavailableonalcoholconsumptionduringpregnancy,establishednationalcommunityreferencegroupsandundertookaprojecttoidentifythe‘topten’prioritiesforfutureresearchfrombothcommunitymembersandserviceproviders.Thisworkhasbeenextremelyrewardingonapersonallevel,butithasalsoplayedaroleinensuringthe community is integral to all research conducted in this area.

How do you feel now compared to when you started?Ifeelaspassionateaboutconsumerinvolvement inhealthcareandresearchnowasIdidwhenI firststarted.

What’s your greatest achievement?In2015IwasappointedtotheOrderofAustraliafor‘Significantservicetocommunityhealththroughconsumer advocacy roles and strategic policy research anddevelopment’.Thiswasaveryhumblinghonourandfantastictoberecognisedinsuchawayfordoingworkthat I love and am really passionate about.

Any messages to people new to involvement?Doit,whathaveyougottolose?Yourexperiencesoflivingwithorcaringforsomeonewithaconditionaretrulyinvaluable.Beinginvolvedcanbegreatfunandprovidefriendshipsthatlastalifetime.

Anne’s story of involvementConsumer Advocate. Manager, Community Engagement, Telethon Kids Institute.


9. What training and support might I be offered?

Training for people who get involvedBeforeyougetinvolvedinaresearchproject,orwhenyoujoinagroup,youmaybeofferedtraininginvolvementandaboutresearch.Theaimwillbetohelpyouunderstandtheresearchworldabitbettersothatyoucanunderstandwhenandhowyourcontributionsaddvalue.Dependingonyourbackgroundandexperience,youmayfindsomeformsoftrainingmorehelpfulthanothers.Everyonewillhavedifferentthingstheywanttolearn.

Aswithanythingelseinlife,youwilllearnhowto‘doinvolvement’inanumberofways.You’llreadaboutitandyou’lllearnfromotherswithmoreexperiencethanyou.Butyou’llprobablylearnthemostfromactuallydoingit–‘learningonthejob’.Don’tbeconcernedifeverythingisn’tperfectatthestart.Yourskills,understanding,andconfidencewillgreatlyincreaseovertime.

“IcameintoitwithmentalhealthissuesandIwasquitescaredatthebeginning,butI’vegrownandbecomeanextremelyconfidentpersonandthat’samazing.Asyoucanbecomemoreconfident,you’remoreabletochallenge.Startgentlyandyouwillgrow,andyourcontributionswillgetbetter.Youhavetofindyourfeetatfirst,butitdoesn’ttakelong.”(Consumer)

Support for people who get involvedThereshouldalwaysbeatleastonepersonwhosejobitistosupportconsumerstobeinvolved.Theywillsupportyouinthewaythatmeetsyourneeds,perhapsgivingyouextrasupportatthebeginning,andhelpingyoudevelopyourconfidenceovertime.Theywillaimtomeetyourpracticalneeds,youremotionalneedsandyour learning and support needs.

“Oneofourprojectswantedtoinvolveawomanwithgout–Ididn’tevenknowwomengotgout,buttheydo,andwefoundone.Shewouldneverhaveputherselfforward,butweencouragedherandgaveheralotofsupportatthestart.Oneofuswenttothemeetingswithher,butshedoesn’tneedusnow!Sometimespeoplecandoalotmorethantheyrealisebutmightneedabitofextrasupportatthebeginning.”(Consumer)

“SometimesI’vebeenneartotearswhensomebodysayssomething.Itcanjusttouchanerve,soyou’vealwaysgottobesurethereissomebodytherewhowillmakesureyou’realright.That’swhatIfoundwiththestaffteamhere.Theymakesurethereisnoobstacleforme.Theyalwaysmakeeverythingsimpleandeasyforme.Allthesethingsmakeadifference.”(Consumer)


10. How will I benefit from being involved?

Peoplewhohavebeeninvolvedinresearchsaythattheexperiencehasbeenmorerewardingandmorefunthantheyexpected.Ithasgiventhemarenewedsenseofpurpose,frombeingabletousetheirexperienceandknowledgetoimproveresearch,andhelpmakethefuturebetterforothers.

“IfIcanhelpjustonepersonsotheydon’thavetogothroughthepainthatIwentthrough,thenmytimebeinginvolvedinresearchisworthwhile.Cominghere,you’rethinkingofthepeoplewhocomeafteryou,andhowyoucanimprovethingsforthem.”(Consumer)

Ithasgivenpeoplenewknowledge,fromlearningabouthowresearchworks,whatresearchersarereallylike,andhearingaboutthelatestresearchondifferentconditions.Somepeopleusetheknowledgeandskillstheygainthroughinvolvementtobetterpreparefortheirinteractionswithhealthprofessionals.

“NowwhenIseemydoctor,Iammuchmoreconfidenttoaskhimaboutthelatestresearchintomycondition.Ifeelmuchmoreincontrolofmycondition.(Consumer)

Involvementallowspeopletodevelopnewskillsandprovidesopportunitiestousetheirexistingskills.Peopleendupdoingthingstheywouldneverhaveimagineddoingbefore.Theysometimesgobacktodoingthingstheirhealthhadstoppedthemdoing.Sometimesdevelopingandreusingtheseskillshelpspeopletofindworkorgobacktowork.

Manypeopleenjoythesenseoffeelingvaluedbyresearchers.Peoplewhohavelostjobsbecauseoftheirhealth,oftensaytheylostconfidenceintheirabilities,butgettinginvolvedhelpedtoremindthemofwhattheycando,helpingthemtofeelusefulagain.Astheygainconfidenceovertime,peopleimprovethequalityoftheircontributionsandgetinvolvedinmorevariedandextensiveways.

Talkingabouttheirconditionwithresearcherssometimesprovidespeoplewithadifferentwaytocope. Theyvaluebeingabletotalktosomeonewhoisgenuinelyinterestedintheirconditionandmakinggooduse ofwhatmighthavebeenabadexperience.

“Beinginvolvedgavemeabetterhandleonmyfibromyalgia,ratherthangoingtotherapyortalkingtoasympatheticfriend.Idon’talwayswantapatontheshoulderorforsomeonetofeelsorryforme.Withresearch,yougettotalkaboutitinaverydifferentway,whichhelpsyougetyourmindarounditandgivesyourexperienceavalue,andyouavalue,thatyoudon’tgetanywhereelse.”(Consumer)

Peoplewhojoingroupsorworkwithotherconsumersoftensaytheymakemanynewfriendsovertheyears,peoplewhoprovideamuch-valuedsourceofsupport.

“Iwasn’tawarehowexcitinginvolvementwouldbe.IthasopenedupanewworldthatIhadnoideaexistedandI’vemetloadsandloadsofdifferentpeople.That’samassivebonus.”(Consumer)


11. Why do people get involved in research?

Peoplewhogetinvolvedinresearchhavedifferentreasonsforwantingtodoit.Formostpeople,it’saboutmakingadifference,wantingtoensurethatfuturecarewillbebetterforthepeoplewhocomeafterthem.Somepeoplehavehaddifficultexperiencesandappreciatebeingabletodosomethingpositivewiththatexperience.Othershavehadverygoodexperiences,andseetheirinvolvementasanopportunityto‘givesomethingback’.

“Istillhavemycondition,butmyexperiencesandotherpeople’sexperiencescanhelptochangethings.Iknowwhatwedomakesadifference,maybenottomyhealth,buttosomeoneelse’s,tofuturegenerations.Tobeabletobepartofthatjourney,bybeinginvolved,isanamazingthingtodo.”(Consumer)

Ifyouhaveaparticularconcern,oraspecificchangeyouwanttosee,involvementinresearchmaynotbethebestwayforyoutoinfluenceothers,unlesstheresearchisveryspecificallyaboutyourissue.Theremaybeotherwaystohelpimproveservices,forexample,byworkingdirectlywithhealthcareorganisationstoimprovethewaycareisdelivered.

Gettinginvolvedinresearchisabouthelpingtotestoutideasofwhatmakescarebetter,ratherthanfocusingonwhatwentwrong.Findingeffectivewaystosharethemostsignificantpartsofyourstory,isimportanttohelpresearchersunderstandwhatmattersmosttoconsumers.


12. Where can I find out more?

Ifyouwouldliketogetinvolvedinresearch,therearelikelytobeanumberofopportunitiesthatmightsuityou.Thechallengeliesinfindingthem,astheyareadvertisedindifferentplacesbyavarietyoforganisations.

Someoftheplacesyoucouldlookandorganisationsyoucouldcontactinclude:l ConsumersHealthForum(https://www.chf.org.au)l LocalConsumerGroups(e.g.,WAConsumerandCommunityHealthResearchNetworkorHealth

ConsumersNSW)l HealthIssuesCentre(http://www.healthissuescentre.org.au/health-services/consumer-engagement-guide/

recruiting-consumers/)l Research4Me(https://research4.me)l LocalHealthcareorganisations(e.g.,hospitalsandGPpractices).Askstaffiftheyknowofanyinvolvement

opportunitiesinyourareal Universitiesworkingonhealthresearchl Ifyouareapatientorcarer,anymedicalcharitiessupportingpeoplewithyourhealthconditionl Newspapers–localandnational.

consumer involvement pack · contributions are inestimable.” (consumer) if you get involved in...

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