IRAS project ID 191177 DEPEND WS1 Information Sheet Patients/carers (Mental Health) Version 3b 25th January 2017

DevelopingandEnhancingtheUsefulnessofPatientExperienceandNarrativeDataChiefInvestigator:DrCarolineSanders,UniversityofManchester

Patient/CarerParticipantInformationSheetWewouldliketoinviteyoutotakepartinaresearchstudy.Beforeyoudecidewhetherornottotakepart,pleasereadthisinformationsheetwhichexplainswhatthisresearchisabout,whyitisbeingdoneandhowitcouldinvolveyou.Whatisthestudyabout?Feedbackaboutpatients’experienceofNHSservicesiscollectedwiththeaimofimprovingthequalityandsafetyofservices.Oftenthisinformationcomesfrompostalsurveysaskingpatientsaboutpreviousexperiences.Sometimesitisdifficultforpatientstorememberdetailsofexperience,andstaffoftenthinkthequestionsaretoogeneralandnotrelevanttoallpatientsandcarers.Patientsoftenwritedetailedcommentsabouttheirexperiencesonsurveys,butthesearenotalwaysusedasstaffcannotreadthroughthemall.Someservicesrecordpatientstoriestohelpstaffimproveservices.However,therehasbeenlittleresearchonthebestwaystocollect,analyseandpresentpatientfeedbackdatainordertoimproveservices.Thestudyasks:canwemakedataaboutpatientexperienceofNHSserviceseasiertocollect,andmoreuseful,byimprovingthewayweanalyseandpresentthisinformation?Thestudyaimstotalktopatientstofindouttheirviewsoncollectionofdataonpatientexperience.Workingwithpatients,wewilldesignnewandeffectivewaystocollectdataonpatientexperience,throughwriting,audioorvideo.Wewilltalktohealthstaffandtheirmanagersabouthowtheywouldwantthisdatapresentedsotheycanbestuseit.Thiswillhelptocreateanew,moreusefulmeansofgatheringfeedbackofpatientexperienceandtointroduceitinthreedifferenthealthcaresettings.Wewillthenspeaktopatientsandstaffonceagaintoassesstheirimpressionsofthechangesthathavebeenputinplace.Whoisdoingtheresearch?ThisprojectisbeingundertakenbytheUniversityofManchesterincollaborationwithSalfordRoyalNHSFoundationTrust,andGreaterManchesterMentalHealthNHSFoundationTrust.ItisfundedbytheHealthServicesandDeliveryResearch(HS&DR)ProgrammeoftheNationalInstituteforHealthResearch(NIHR).

IRAS project ID 191177 DEPEND WS1 Information Sheet Patients/carers (Mental Health) Version 3b 25th January 2017

WhyhaveIbeeninvited?

Youhavebeeninvitedtoparticipateinthisstudybecauseyouare:i. apatientwhohasexperiencedamentalhealth

problemandyouarereceiving(orhaverecentlyreceived)supportfromacommunitymentalhealthteam,

ii. apatientwithamentalhealthproblemattendingaGPpracticeparticipatinginthisstudy,or

iii. acarertosomeonewhohasexperiencedamentalhealthproblem.DoIhavetotakepart?Participationinthisstudyisentirelyvoluntaryandyouarefreetowithdrawatanypointwithoutgivingareason.Ifyouchoosenottotakepart,orifyouwithdrawatanypointduringthestudy,thiswillhavenoeffectonthestandardofcareyoureceive.Shouldyouagreetoparticipate,youwillbeaskedtosignaconsentform.WhatwillIhavetodoifIparticipate?Thereare4phases(knownas‘workstreams’)tothestudy.Duringworkstreams1,3and4,participantswilltakepartineitheragroupdiscussion(calledafocusgroup)orwillbeinterviewedindividuallybyamemberoftheresearchteam.Youwillbeinvitedtotakepartinoneintervieworfocusgroupdiscussionwhenyoujointhestudy.Someparticipantswillalsobeinvitedtotakepartinanotherintervieworfocusgroupatlaterpointsinthestudy.Youwillbeinvitedtotakepartinamaximumof3interviewsorfocusgroups,butyoudonotneedtotakepartinallofthesetobeaparticipant.Inworkstream1,participantswillbeaskedabouttheirviewsonthebestwaystogettheirfeedbackaboutservices.Theywillbeaskedaboutthedifferentmeansthatcouldbeusedtodothissuchasthroughtheuseofquestionnaires,opentextcomments,audioand/orvisualrecordings.Wewillalsoaskaboutthepossiblebarriersforgivingfeedbackaboutexperience

andtreatment.Inworkstream2computerscientistswhoaremembersoftheresearchteamwilldesignwaystoanalysefreetextcommentsthatarealreadybeingcollectedintheNHS.Wearenotaskingpatients/carertotakepartinthisstage.Inworkstream3,aproportionofpatients/carerswhotookpartininitialfocusgroupsandinterviewsinworkstream1willbeaskedtotakepartinagroupdiscussiontohelpco-designa

IRAS project ID 191177 DEPEND WS1 Information Sheet Patients/carers (Mental Health) Version 3b 25th January 2017

toolkitfortheNHS.Thetoolkitwillbemadeupofseveralpartsdesignedtoimprovewaystocollect,analyseandpresentpatientfeedbackdata:

1. Guidanceabouthowtobestcollectpatient/carerfeedback,includingtheuseofdigitaldevicessuchasmobilephonesandipads.

2. Computerprogrammesforanalysingfreetextcommentsmadebypatientsandcarers.

3. DifferentformatsforpresentingpatientfeedbackinwaysthatareusefulforstaffInworkstream4,followingtheintroductionofthetoolkit,participantswillbeinvitedtotakepartinanintervieworfocusgroupabouttheirexperienceofgivingfeedbackabouttheircare.Participantswillalsobeinvitedtotakepartincompletingashortquestionnaireaspartoftheworktoestimatethecosts(intermsoftimeandeffort)andbenefitsofdifferentwaysofcollectingfeedback.Focusgroupswilltakeplaceatcentrallocations,andindividualinterviewswilltakeplaceataplaceandtimethatisconvenientforyou.Wewillaudio-recordthesediscussionssothatwecanfullyconsiderandreviewallthatissaid,andaUniversityofManchesterapprovedsupplier,‘1stclasssecretarial’,willtranscribethembeforeweanalysetheminourresearch.1stclasssecretarialtradesunderthenameLawsonHardwickLtdandhassignedaconfidentialityagreementwiththeUniversityofManchester.Website:https://www.1stclass.uk.com/Thefocusgroupdiscussionswilllastapproximately2hours.Theindividualinterviewswilllastapproximately1hour.WillIbepaid?Wewillpayforanytraveltoandfromtheresearchsitee.g.travellingtoattendafocusgroupmeetingoraninterview.Asatokenofourappreciationofyourparticipationinthisstudywewillgiveeachparticipanta£10voucherforeachintervieworfocusgroupattended.Whatarethepossibledisadvantagesandrisksoftakingpart?Wewillaimtoorganiseallgroupdiscussionsandpersonalinterviewsatlocationsandtimesthataremostsuitableforallparticipants.However,werecognisethepossibilitythatsomeparticipantsmayfeelupsetiftalkingaboutdifficultexperiences.Theresearcherwillbesensitivetothisduringmeetingsandwillencouragepeopletotakeabreakorpossiblywithdrawfromtheactivityifthecircumstancesbecometoostressful.CanIwithdrawfromthestudy?Youmaywithdrawfromthestudyatanypointwithoutgivingareason.

IRAS project ID 191177 DEPEND WS1 Information Sheet Patients/carers (Mental Health) Version 3b 25th January 2017

Whatarethepossiblebenefitsoftakingpart?Therearenodirectbenefitstotakingpart,althoughyouwillhavetheopportunitytoparticipateinresearchthataimstocontributetotheimprovementofNHSservicesbyincreasingthecredibility,usefulnessandrelevanceofpatientexperiencedatainservicesforpeoplewithlong-termconditions.Whathappenswhentheresearchstudystops?Wewillsendyouasummaryofourfindings.Pleasebeawarethatconsentforms,audiorecordingsandwrittennotesbasedoninterviewsandfocusgroups,willbesecurelystoredattheUniversityofManchesterforaperiodoftenyears.Willmytakingpartinthestudybekeptconfidential?Yes.Whateveryousayininterviewsorfocusgroupswillbekeptconfidentialandwillnotbediscussedwithanyoneelse.Anyinformationthatidentifiesyouwillbeanonymisedattheearliestopportunity.Wewillseekyourconsenttousesomeanonymisedquotationstakenfrominterviewsandfocusgroupsinpapersandreportspublishedduringandaftertheresearch.Anysuchquotationswillnotincludenamesofparticipants,orothertypeofidentifiableinformation.IndividualsfromtheUniversityofManchester,NHSTrustorregulatoryauthoritiesmayneedtoaccessdatacollectedduringthisstudytoensuretheresearchisbeingconductedappropriately.Withyourpermission,thiswillincludedatafromwhichyoucouldbeidentified.Allindividualshaveadutyofconfidentialitytoyouasaparticipantinthisresearch.Whatwillhappentotheresultsoftheresearchstudy?WewillmakethefindingsandthetoolkitavailabletoNHSmanagementandinotherhospitalssotheycanusetheresultstoimprovehowtheycollectandusepatientfeedbackforimprovingNHSservices.Wewillalsopublishtheresultsinresearchpublicationsandinformpatientgroupsabouttheresults.Yourrights:

Youshoulddecideonyourownwhetherornotyouwanttotakepartinthisstudy.Ifthereareanyquestionsthatyoudonotwishtoanswer,thenyoucanleavetheseout.Youmaystopparticipatinginthestudyorwithdrawsomeofyourdataatanytimeandthiswillhavenoeffectonthestandardofcareyoureceive.

EthicsApproval:

IRAS project ID 191177 DEPEND WS1 Information Sheet Patients/carers (Mental Health) Version 3b 25th January 2017

NHSResearchEthicsCommittee.

Whatifthereisaproblem?Ifyouhaveaconcernaboutanyaspectofthisstudy,youshouldasktospeaktotheresearcherswhowilldotheirbesttoansweryourquestions.Iftheyareunabletoresolveyourconcernoryouwishtomakeacomplaintregardingthestudy,pleasecontactaUniversityResearchPracticeandGovernanceCo-ordinatoron01612752674or2752046orbyemailtoresearch.complaints@manchester.ac.uk.ContactDetails:Ifyouwishtodiscussparticipationinthestudy,anyaspectsofthisinformationsheetorhaveanyquestionsorconcernsaboutthestudypleasecontact:

DrNicolaSmall(ResearchAssociate):01612754844;Workmob:07584206287Email:Nicola.Small@manchester.ac.ukDrPapreenNahar(ResearchAssociate):01612757640;Workmob:07584206099Email:pareen.nahar@manchester.ac.ukDrCarolineSanders(ChiefInvestigatorleadingthisresearch):Tel:01612757619Email:Caroline.Sanders@manchester.ac.ukCentreforPrimaryCareUniversityofManchesterWilliamsonBuildingOxfordRoadManchesterM139PLWhatdoIneedtodonext?

Youwillberequestedtotakepartinaninterview/focusgrouprelatedtoyourexperienceasapatient/carer.Theinterviewwillbeconductedinyourconvenientplace.Ifanyquestionisuncleartoyouorifyouwanttoknowwhyareweaskingyouthesequestions,youcanaskus.Itwouldtakeaboutanhourfortheinterview;ortwohoursforafocusgroup.Ifanyparticipantbecomesupsetorworriedasaresultofdiscussionsaboutexperiencesofreceivingcare,orgivingfeedback,wewilloffersupportandadvice.Forexample,wemaysuggestyoucontactyourcareteam,orthePatientAdviceandLiaisonService(PALS)astheywillhaveauthorityandnecessaryinformationtorespondtoyourconcerns.Wewilltakeallthecaretomakeyoucomfortablebutifyoudonotwanttocontinuetotalkorwanttoarrangeitanothertime,wewilldothataccordingly.