Australian consumers views on electronic health records a necessary ingredient in healthcare reform

Transcription

1 CSC Helthcre Reserch Report A Rising Tide of Expecttions Austrlin consumers views on electronic helth records necessry ingredient in helthcre reform

2 bout csc Globl leder in helth CSC is globl leder in providing technology enbled business solutions nd services in mny industries. We expnd wht s possible by evolving the wy technology-enbled solutions crete sustinble vlue. Since 1959, clients hve trusted CSC to help them overcome their business chllenges so they cn chieve their corporte objectives. Within the helth sector, CSC is the world s lrgest systems integrtor. CSC hs 92,000 employees worldwide with over 5,000 professionls dedicted to the helth sector. Serving public sector, privte sector nd not-for-profit providers, helth plns, phrmceuticl, medicl device mnufcturers nd llied helth industries globlly, CSC is recognised s leder in trnsforming the helthcre industry through the effective use of informtion to improve helthcre outcomes, decision mking nd operting efficiency. CSC hs over 20 yers experience in the helthcre industry, with clients in the Americs, Europe, Asi nd Austrli. The compny currently mnges over sixty percent (60%) of the UK s Ntionl Helth Service IT Progrm, serves 14 of the world s top 20 phrmceuticl mnufcturers, nd is building nd operting ntionl nd regionl helth informtion exchnges in the United Kingdom, the United Sttes, Denmrk, The Netherlnds nd severl other Europen ntions. Our globl hed office is in the United Sttes nd in ddition to our Austrlin opertions, we hve offices in Asi nd Europe. CSC Austrli ws estblished in 1970; it is the fstest growing IT services orgnistion in Austrli nd is now $1.1 billion compny. We hve offices in every minlnd cpitl city nd employ pproximtely 3,500 people. Our success is bsed on culture of working collbortively with clients to develop innovtive technology strtegies nd solutions tht ddress their specific business chllenges. Our gretest resource is the combined eduction, rel world experience nd cpbilities of our professionl stff. For more informtion, visit the compny s website t About CSC s Globl Helth Think Tnk Emerging Prctices This report hs been produced in collbortion with CSC s Globl Helth Think Tnk, Emerging Prctices. Emerging Prctices is the pplied reserch group for CSC s Helthcre business. The primry role of Emerging Prctices is to understnd regultory, demogrphic, scientific, nd technology trends nd then predict their impct on the helth delivery, helth pln, nd life sciences industries globlly. Emerging Prctices tkes future view both n 18- month out nd 5-yer out perspective in these nlyses. The results re used to develop understndble nd prgmtic frmeworks for communicting future trends round the world nd to develop tools to help the industry nd CSC s clients pln to be successful in the future. All of Emerging Prctice s reserch findings re integrted into CSC service offerings so tht clients cn move s quickly nd risk free s possible to their desired future stte. Most of Emerging Prctices reserch reports nd findings re lso converted into thought ledership ppers nd presenttions tht re shred with the industry nd ccessible from CSC s website ( In ddition to the thought ledership role within CSC s Helthcre business, Emerging Prctices lso works directly for clients, often in reserch role. For exmple, in working with the Americn Hospitl Assocition in the United Sttes (US), Emerging Prctices predicted how the bby boomer genertion would ffect demnds on helthcre; for Lepfrog/Agency for Helthcre Reserch nd Qulity (AHRQ) in the US, Emerging Prctices developed the originl flight simultor to test the bility of hospitl computerised physicin ordering systems to detect errors tht could led to dverse events. Emerging Prctices hve lso developed mny reports for the Cliforni HelthCre Foundtion on technologies with the potentil to benefit nd trnsform helthcre. Subject mtter expertise is lso provided by Emerging Prctices in CSC s work with helthcre clients. Emerging Prctices deeply understnds mny future technologies, nd hence provides expert opinions on wide rnge of leding edge topics for helthcre orgnistions. Emerging Prctices reserchers hve uthored severl published books on informtion technology strtegy, process improvement nd best prctices using IT in helthcre. In ddition, Emerging Prctices hs published numerous peer-reviewed journl rticles nd is often quoted in industry press. Copyright 2010 CSC Austrli Pty Limited. (ACN: ) All rights reserved Detiled Anlysis July 2010.

3 FOREWoRD our commitment to e-helth Wht is the consumers perspective on electronic helth records? Are consumers willing to py for e-helth or do consumers expect tht electronic helth records should be provided s core prt of their helthcre services? Wht is it tht consumers essentilly wnt electronic helth records to do? To whom do consumers wnt to provide ccess to their electronic helth records? Our reserch, cptured in this report, A Rising Tide of Expecttions, seeks to strt the process of eliciting nswers to these questions, to inform Austrli s debte on how e-helth cn nd should work in our reforming helth system. There is incresing cknowledgement nd consensus tht core enbling pltform for modern, sustinble helth sector is electronic helth records nd relted e-helth tools nd technology products. It is time for Austrli to engge in comprehensive discussion on wht this mens for consumers, for ptients, for helthcre providers nd for government. The dvent of new industry the e-helth industry, leverges the ubiquitous nture of mobile technology nd communictions nd the incresing embrce of socil medi. It will therefore require new rules of the gme for ll helthcre providers, ptients nd their fmilies. The consumer voice in prticulr, hs not yet been strongly herd in reltion to e-helth. In this reserch report, A Rising Tide of Expecttions, we gve consumers voice. We found Austrlin consumers lrgely in fvour of electronic helth records. Yet consumers clerly need more informtion nd eduction, s wreness of electronic helth records is low. Austrlin consumers should not be underestimted; respondents quickly grsped the concept nd possibilities of electronic helth records. Regrdless of support, consumers re ble to ssess cpbilities nd likely functionlity for electronic helth records. Our reserch shows strong consensus mongst Austrlins regrding the perceived importnce of most electronic helth record cpbilities. Consumers expect electronic helth records nd the bsic foundtions to be funded s prt of the helth system, primrily, nd convincingly, by governments, with contributions from others such s helth insurers. At CSC, we re the world s lrgest helth systems integrtor nd we deeply understnd the needs nd issues of consumers nd clinicins in reltion to e-helth. By wy of investment in reserch nd relted progrm with clinicins, we seek to promote mture nd informed ntionl dilogue bout e-helth from the perspective of consumers nd clinicins. Through this reserch we im to give stronger voice to the needs nd issues of consumers in reltion to e-helth nd in doing so, contribute to the progress towrds modern helthcre sector underpinned by n e-helth pltform which ssists in providing high qulity, sfe nd timely ptient cre for ll. Lis Pettigrew Director Helth Services, Austrli CSC Mrk Romn Globl President Helth Services CSC Dr Eric Drzen Mnging Director Emerging Prctices, Globl Helth Think Tnk CSC CSC Helthcre reserch report rising tide of expecttions 3

4 4 CSC Helthcre reserch report rising tide of expecttions

5 contents Executive Summry 6 Why do the Reserch 9 Helth Reform nd Helthcre Industry Context 10 The Consumers Perspective 12 Reserch Methodology 14 Insights 16 Insight 1 Struggling to Connect the Dots 18 Insight 2 A Bsic Austrlin Right: Electronic Helth Records 25 insight 3 Redy nd Witing 34 Conclusions 40 Definitions nd Acronyms 46 Contributors 50 References 52 Sources 56 CSC Helthcre reserch report rising tide of expecttions 5

6 executive summry 6 CSC Helthcre reserch report rising tide of expecttions

7 Austrli stnds on the precipice of period of significnt helth reform. Like most other Western countries, Austrli fces chllenges such s the rising costs of helthcre, industry workforce shortges nd chnging ptient demogrphics; ll of which cll for immedite ction. The Federl Budget confirmed the Government s commitment to ddressing these chllenges with reference to recommendtions dpted from the Ntionl Helth nd Hospitls Reform Commission (NHHRC) Report, nd by signing the Ntionl Helth nd Hospitls Network (NHHN) Agreement, bsed on Council of Austrlin Government (COAG) greements. The Government committed $467 million over two yers to introduce personlly controlled electronic helth records (PCEHRs) for every Austrlin who wnts one. With such commitment to e-helth, Austrli is positioned to regin plce longside the United Kingdom, Cnd, nd other Western Europen countries, tht hve moved further hed in implementing lrge-scle e-helth inititives. Similrly, the United Sttes (US) is currently mking strides in e-helth s fundmentl pillr of substntil helth reform, including funding incentives. In debtes cross Austrli on the topic of e-helth, the perspectives of government, privcy dvoctes nd clinicins hve been well voiced. The consumers perspective hs not been s well rticulted or herd. In Mrch 2010, CSC commissioned ntionl Newspoll phone survey of 1208 Austrlin consumers (ged 18+ yers). The respondents were rndomly selected using process tht included quot set for ech cpitl city nd non-cpitl res, nd within ech of these res quot set for groups of sttisticl divisions to reflect the overll popultion distribution. In ddition, interviews with prominent Austrlin clinicins were lso undertken by members of CSC s Helth Services prctice to complete the overll picture of Austrlins views on electronic helth records. The dt in this report hs been nlysed by our prctice leders in collbortion with CSC s Globl Helth Think Tnk, Emerging Prctices. A number of comments cptured during the interviews hve been incorported to provide supplementry perceptions nd clinicin insights to consumer trends. The reserch nlysis identified numerous trends; some relevnt to the entire popultion, some to specific ge groups nd some loction-bsed. The mjor findings hve been grouped into three key insights tht include supporting dt nd comments from consumers nd clinicins like. 1. Struggling to Connect the Dots The ptient-clinicin informtion dilemm. Almost ninety percent (90%) of the prticipnts in this survey believe they ctively mke n effort to improve nd mintin their helth. Austrlin ptients see their doctors on verge 4.8 times yer. This number is higher thn other countries including the US. However, other ntionl sttistics suggest Austrli s helth should not be viewed so positively. The prevlence of dibetes hs doubled in the pst two decdes. 1 Additionlly, one in four children (ged 5-17 yers) were overweight or obese in , s well s stggering sixty-one percent (61%) of Austrlin dults. 2 Helth spending per person ws forty-five percent (45%) higher in thn decde erlier. 3 Interviews with clinicins suggest they re wre of this consumer misconception of their own helth. Potentil resons redily come to mind for this seeming ptient-clinicin disconnect tht ppers to be ignoring worsening helth trends. For exmple: problems with ccess to consolidted ptient informtion, lck of consumer knowledge bout trcking helth sttus, problems with ccess to pproprite nd timely cre, problems with ptients obtining informtion nd eduction nd consumer interest in mintining control nd the right to decide. Further reserch in this spce would be informtive. 2. A Bsic Austrlin Right Electronic Helth Records A question of responsibility nd investment. After explining the concept, sixty-four percent (64%) of consumers were in support of electronic helth records, including over hlf of this number being strongly in fvour. This ws despite the fct tht only forty-three percent (43%) were wre of the proposed introduction of electronic helth records before the survey. Seventy percent (70%) of consumers surveyed, stted they were not willing to contribute to the cost of n electronic helth record. The minority of Austrlins (27%) who re prepred to contribute to the cost of n electronic helth record re interested in pying no more thn $50 per yer. CSC Helthcre reserch report rising tide of expecttions 7

8 Consumers believe it is primrily the Federl or Stte governments responsibility to finncilly contribute to the cost of electronic helth records (88% support electronic helth records being funded with contributions from Federl or Stte Governments). An expecttion by Austrlins tht the Government should tke the led in developing nd providing ntionl infrstructure such s electronic helth records is not surprising. An unexpected finding is tht sixty-three percent (63%) regrd privte helth insurers s lso hving some funding responsibility. This ws surprising finding since less thn hlf of ll Austrlins (44.7 %) hve privte insurnce. 4 Privte helth insurers hve lrge stke in helth reform efforts, including electronic helth records. From the survey results, it ppers Austrlins re open to privte helth insurnce compnies being more involved in the provision of electronic helth records. Through Austrli s privte helth insurnce rebte, the Federl Government cn be considered to be n importnt shreholder in this industry. The survey responses from consumers suggest Austrlins re open to the Government leverging this shreholding further. Austrlins re t the erly stges of understnding wht e-helth is, nd indeed the dvent of the new industry of e-helth. Like ny new product or technology, the chllenge is to work out wht re the fetures nd benefits tht re of use to consumers The findings show very high consensus on the types of dt tht should be incorported into electronic helth records. The reserch findings in reltion to funding re informtive for the growing e-helth softwre nd technology industry. The chllenge to the helthcre softwre vendors is to crete solution suites tht meet the evolving government, helthcre provider nd consumer needs. 3. Redy nd Witing Austrlins wnt choice nd control. The consumer reserch focused on dt types nd dt shring. Results indicted tht mong Austrlins who re in fvour of n individul electronic helth record, there is significnt consensus on wht dt should be included in such record. However, Austrlins wnt choice with eighty-nine percent (89%) rting the bility to select which helthcre providers view their informtion s vluble. Seventy-four percent (74%) of Austrlin consumers rte the bility to dd dt to their electronic helth record s n importnt cpbility. Over ninety-six percent (96%) of ll Austrlins who re in fvour of n individul electronic helth record believe tht current medictions, llergies, dignoses, medicl procedures, test results nd vccintions should be shred through n electronic helth record. Consumers 65 yers nd older were most open to llowing ll helthcre providers (38%) ccess to their dt. In ddition, seventy-eight percent (78%) of consumers ged 65+ yers believe it s importnt to be ble to select wht helth informtion is ble to be viewed by different helthcre providers. This result ws significntly higher mong s (87%). New technology inevitbly nd understndbly rises issues of privcy, security, consent, nd how to ttin success from implementtion of new technologies. Lrge scle technology inititives typiclly crete concerns nd strong opinions on these topics. It is mistke to cst these issues s technology issues lone. Technology cn now solve lmost ny well rticulted requirement. The chllenge is to develop, gree nd rticulte the policies required in reltion to privcy, ccess, security nd consent. Ninety-one percent (91%) of ll Austrlins wnt to be ble to see their helthcre dt ll in one plce. It hs been sid tht by 2020, the Millennil Genertion (Gen-Y) will not expect nything other thn digitlised public services. If the helth system is to engge with this cohort, fundmentl chnges need to occur to communictions between clinicl professionls nd consumers. This is necessry disruptive prdigm shift. Other industries hve lredy trversed this terrin nd the helthcre industry cn lern their lessons. The chllenge now for Austrli is to embrce e-helth, not merely s technology, but s fundmentl enbler underpinning helth reform nd modern clinicl prctices to provide better, timelier nd sfer helthcre. The first step is personlly controlled electronic helth records by Successful implementtion nd doption of e-helth will require enggement of consumers t ll stges of policy, strtegy, plnning nd implementtion to meet rising tide of consumer expecttions. 8 CSC Helthcre reserch report rising tide of expecttions

9 why do the reserch CSC Helthcre reserch report rising tide of expecttions 9

10 why do the reserch Helth Reform nd Helthcre Industry Context Austrli, like lmost ll countries, (prticulrly western countries), is in the midst of significnt helth reform. Attempts to reform helth systems round the globe represent, mongst other things, n industry nd government response to the substntil chllenges of the rising costs of helthcre, workforce shortges nd tectonic ptient demogrphic chnges. The Austrlin government is tking the need for drmtic reform to helthcre services seriously. With the pproching silver tsunmi nd mrked increse of chronic diseses, exmples of defensive medicine nd new medicl technology brekthroughs, helthcre expenditure is well cknowledged s becoming unsustinble. Reserch by the Austrlin Institute for Helth nd Welfre (AIHW) conducted in 2008, estimted totl helth nd residentil ged cre expenditure is projected to increse by one hundred nd eighty-nine percent (189%) in the period , from $85 billion to $246 billion, n increse of $161 billion. 5 Alredy, expenditure on chronic disese in Austrli ccounts for nerly seventy percent (70%) of totl helth expenditure on disese nd this is expected to increse s the popultion ges. 6 As outlined in the Ntionl Helth nd Hospitls Reform Commission (NHHRC) report in 2009 A Helthier Future for ll Austrlins, we re system under incresing pressure; frgmented system with inequitble ccess for those locted in rurl nd remote res nd the Indigenous popultions. Since the Council of Austrlin Governments (COAG) meetings in April 2010 nd through the My Federl Budget, the Austrlin Federl Government hs outlined multi-pronged pproch to deling with these issues, through the introduction of the recommended Ntionl Helth nd Hospitls Network (Agreement). The proposl hs received mixture of qulified support, criticism nd debte. A pillr of helth reform in mny countries hs been e-helth nd electronic heth records. The NHHRC recommended strongly in fvour of Austrli s support nd doption of e-helth with focus on the consumers perspective: the introduction of person-controlled electronic helth record for ech Austrlin is one of the most importnt systemic opportunities to improve the qulity nd sfety of helthcre, reduce wste nd inefficiency, nd improve continuity nd helth outcomes for ptients. Giving people better ccess to their own helth informtion through person-controlled electronic helth record is lso essentil to promoting consumer prticiption, nd supporting self-mngement nd informed decision-mking. 7 The recent Federl Government Budget confirmed n investment in helth reform nd informtion technology. The Budget included spending of $7.3 billion over the next five yers to relise the Ntionl Helth nd Hospitls Network (NHHN). An dditionl $2.2 billion of investment hs been llocted with $467 million over two yers ermrked to introduce personlly controlled electronic helth records for every Austrlin who wnts one, strting by July The Federl Government investment is lso strong mrket signl of support for e-helth nd llows Austrli to regin its position longside the United Kingdom (UK), Cnd nd severl Western Europen countries commonly observed to be more progressed thn Austrli in implementing lrge-scle e-helth inititives. In the United Sttes (US), under the politicl ledership of President Obm nd the clinicl ledership of Dr Dvid Blumenthl, the Ntionl Coordintor for Helth IT, the US is now mking lrge strides in dvncing e-helth s fundmentl pillr of helth reform to modernise the Americn helth system. A snpshot of key e-helth innovtors is illustrted in Figure 1 s prt of CSC s Globl E-Helth Atls. CSC s Globl E-Helth Atls is ccessible t 10 CSC Helthcre reserch report rising tide of expecttions

11 CSC Helthcre reserch report rising tide of expecttions 11 Figure 1 CSC s Globl E-Helth Atls Source systems Acute integrtion systems (>80%) Primry cre integrted systems (>80%) Usge nd ccess Systems used for clinicl decision mking Ptient ccess to records Ntionl integrtion nd shring Ntionl electronic helth records nd unique identifiers E-Helth infrstructure nd communictions Agreed clinicl coding nd dt trnsfer stndrds Tilored legisltive nd privcy frmeworks Cler politicl nd clinicl ledership r r r r r r r r r r r GLOBAL E-Helth Progress Criteri KEY: On trck/in plce Promising/some progress r Chllenges/not strted

12 why do the reserch The consumers perspective E-Helth nd electronic helth records hve long been esoteric topics best understood mongst Informtion Technology (IT) ficiondos in the helthcre industry, IT professionls nd government deprtments looking to select nd implement clinicl nd ptient dministrtion softwre pckges. Recently, in Austrli nd overses, e-helth hs emerged s minstrem issue of interest to consumers nd wider cross section of clinicl professionls. Across the globe, e-helth is t the forefront of helth reform. Indeed, consumers elected President Obm not just s helth reform President but s n e-helth reform President; the United Sttes (US) e-helth reforms were commenced in dvnce of the reforms to helth pyments nd helth cre rrngements. In prticulr, throughout Europe where e-helth hs lredy been implemented, consumers hve strted to notice the benefits to themselves nd their fmilies from shring nd integrtion of their helth records mongst their helthcre providers nd pyers. Further, for mny consumers nd their fmilies, prticulrly those with chronic diseses, conditions or other lifestyle fctors requiring regulr cre nd checkups (such s dibetics or older persons), there is n empowerment tht cn come from seeing the sme dt their helthcre providers see bout themselves nd their helth. In debtes cross Austrli in recent yers regrding e-helth, the perspectives of government, privcy dvoctes nd clinicins hve been well voiced. The consumers perspective hs not been well rticulted or herd. The Ntionl E-Helth Trnsition Authority (NEHTA) hs recently commenced stkeholder forums tht include consumers. This is commendble. Rel enggement of consumers (nd clinicins) requires gret del more. The NEHTA Bord does not yet include either clinicin or consumer representtives. CSC believes tht e-helth cn only succeed nd chieve its gols of supporting better, sfer cre with the support of both clinicl professionls nd even more importntly, consumers prticulrly ptients, their crers nd fmilies. This reserch is importnt s it is one of the first thorough nd independent representtions of the consumers view on e-helth nd electronic helth records for Austrli. The consumers perspective is instructive nd informtive. The consumers perspective hs often been the missing voice in discussions on e-helth nd electronic helth records. This reserch report seeks to redress this gp nd give Austrlin consumers voice in the e-helth debtes nd ctivities. This reserch hs sought to find out wht Austrlins know bout e-helth nd electronic helth records, levels of support mongst the community, exctly wht Austrlins think electronic helth records should entil nd wht levels of ccess nd control re pproprite. Further, the reserch sought the views of Austrlins on whether they re prepred to personlly finncilly contribute to electronic helth records nd who else should contribute to the ssocited costs nd investments. This reserch hs provided interesting nd new findings, yet it lso prompts mny dditionl interesting questions which would idelly be the subject of further reserch by government nd/or the privte nd other sectors. There is rising tide of expecttion mongst consumers s to the minimum electronic helth records tht should be vilble for Austrlins. 12 CSC Helthcre reserch report rising tide of expecttions

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14 reserch methodology 14 CSC Helthcre reserch report rising tide of expecttions

15 The primry source of dt for this report ws Newspoll phone survey of 1208 Austrlin consumers (ged 18+ yers), conducted ntionlly during Mrch To supplement this survey, trgeted phone or in-person interviews with severl prominent Austrlin clinicins were lso completed by members of CSC s Helth Services prctice. Consumer Survey The consumer phone survey ws conducted using survey questionnire with pre-defined list of choices. A subset of questions llowed comments for further explntion, severl of which hve been incorported in the text of this report to emphsise specific trends noted. Definitions nd exmples for terms potentilly unfmilir to the respondent were provided in the survey to ensure ll responses were bsed on the sme bsic understnding of Informtion Technology nd medicl terminology. The respondents were rndomly selected using process tht included quot set for ech cpitl city nd non-cpitl res, nd within ech of these res quot set for groups of sttisticl divisions (e.g. ge, sex). Results were post-weighted to the Austrlin Bureu of Sttistics dt on ge, highest level of schooling, sex, nd re to reflect the overll popultion distribution. The one-hour clinicin interviews were conducted using n interview guide of closed nd open-ended questions, to ensure ll topic res were covered nd questions were sked using the sme lnguge nd exmples. The purpose of the clinicin interviews ws threefold: 1. elicit their own personl views on helth informtion shring in terms of the importnce to cre nd efficiency 2. record their views on electronic helth records s clinicin AND consumer 3. Shre selected results from the consumer survey for commentry input s clinicin. A number of comments cptured during the interviews hve been incorported in the text of this report to provide supplementry perceptions nd clinicin insights to consumer trends. A list of the prticipting clinicins cn be found in the Contributors section t the end of this report. The results were tbulted by question nd response, expressed in totl nd by specific divisions such s ge, sex, household income nd geogrphic re. Specific responses to some questions were further filtered bsed on responses to nother question. Both the filtered nd ggregte response sttistics were tbulted for this study. Clinicin Interviews CSC Helthcre reserch report rising tide of expecttions 15

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17 insights CSC Helthcre reserch report rising tide of expecttions 17

18 Insight 1 struggling to connect the dots The ptient-clinicin informtion dilemm 18 CSC Helthcre reserch report rising tide of expecttions

19 The medi regulrly reports tht Austrlins re getting hevier, less helthy nd re incresingly burdened with chronic disese. The prevlence of dibetes hs t lest doubled in the pst two decdes, with Type 2 dibetes expected to become the leding cuse of disese burden by Additionlly, one in four children (ged 5-17 yers) were overweight or obese in , s well s stggering sixty-one percent (61%) of Austrlin dults. 9 Helth spending per person ws forty-five percent (45%) higher in thn decde before, even fter djusting for infltion. 10 Yet, the significnt mjority of Austrlins, lmost ninety percent (90%) in this survey, believe they ctively mke n effort to improve nd mintin their helth on regulr bsis. NEHTA consumer reserch, conducted two yers erlier, indicted tht seventy-four percent (74%) of the respondents rte their own helth s excellent or good. 11 Interviews with clinicins suggest tht they re certinly well wre of this consumer misconception of their own helth. Most believe tht only minority of their ptients re effectively tking good cre of themselves. People often underestimte the importnce of lifestyle on their helth. Clinicin tht s the beuty of generl prctice. If we do helth promotion nd prevention right, we dd yers nd yers to someone s life expectncy. If you cn ct now to tret ptient s cncer, you cn potentilly sve their life. If you cn ct now to ssist someone to stop smoking you dd potentilly decdes to someone s lifespn. Clinicin Prevention is not cost sving thing, you do it to mke people s lives better. Clinicin Clinicins, s consumers themselves, hve more relistic perspective of their own helth sttus whether it be strong or poor. Less helthy clinicins cknowledge their selfmngement my hve much to be desired nd helthier clinicins understnd the ctions they re tking to mintin their helth. i don t do ny prticulr exercise, I et quite bdly. Clinicin this profession doesn t llow you to do gret del [to improve your helth], but I hve no excuse. As fr s I m concerned, tht s my responsibility. Clinicin One clinicin sums up perception of the chllenge for most consumers of stying helthy tht our society nd current lifestyles hve seriously ffected helthy living, leding to poor eting hbits nd lck of exercise. i think the problem with our society is tht it s chnged. Alcohol is reltively chep nd you don t hve to exercise nymore, you cn drive...people hve poor helth due to the fct tht society is chnging. Clinicin In , the proportion of dults who sufficiently exercised to chieve helth benefits, in one-week period, ws 37%. 12 CSC Helthcre reserch report rising tide of expecttions 19

20 eighty-six percent (86%) of Austrlins personlly keep some form of medicl informtion or helth record. connecting the dots to good helth Modern society my be plying role in Austrli s worsening helth sttus but it is only prt of the problem. So wht fctor or fctors cn explin this seeming ptient-clinicin disconnect tht ppers to be ignoring worsening trend? 1. is there problem with ccess to ptient helth informtion? Across Austrli, ptient informtion is still lrgely stored in either clinicin s electronic medicl record system (t the clinicin s surgery, or t clinic, or hospitl), in series of pper chrts nd records, or more commonly combintion of both. For ptients tking n interest or responsibility for their helth nd their fmily s helth, nd the relted helth records, the effort to collect nd potentilly consolidte their own full medicl record involves tresure hunt through mny different dt sources including electronic nd pper trils. Test results ordered by different clinicins, eductionl mterils given to ptients to mnge their helth nd vitl sign dt tht some ptients record t home re kept by mny ptients to shre with their clinicins s prt of the cre process. The survey results identified tht the mjority of consumers (86%) re keeping copies of these reports nd/or mintining logs of informtion they collect t home. Of those who keep records, fifty percent (50%) shre them with their clinicins. i print out the results nd tke them long. I tke my glucose levels nd put them in spredsheet nd I lso drw grph much to my doctor s irrittion. Consumer it (ptient provided dt) cn be enormously vluble. Helps you understnd wht s hppened with tht ptient before. Clinicin You re monitoring it better four times dy (ptient self monitoring of vitl signs) thn I cn do by monitoring it once in blue moon. Clinicin The good news is tht mny Austrlin clinicins re strting to store, or re lredy storing, ptient helth records electroniclly. Some clinicins re trying to run n entirely pperless office with ll ptient records stored electroniclly this still often involves scnning the pper they inevitbly receive nd printing forml documents to send vi trditionl mil. Electronic shring of informtion mongst Austrlin clinicins remins ptchy nd lrgely relies on bespoke, d hoc rrngements. Ptients do not yet hve ny redy wy to see their helth or medicl records other thn by sking their helthcre providers for copies of the informtion. For the minority of clinicins who re shring informtion electroniclly, mny re not ble to confirm if their electronic mens of communiction re secure. ech of the eight different compnies tht provide us [test] results is formtted differently. Clinicin becuse people go out nd mke these systems themselves, they re not dequtely ssessing security. Clinicin Conversely, just becuse consumers collte it, they my not lwys know how to use it, interpret it nd tke ction to direct smrter choices in everydy life. 2. do consumers know how to trck their helth sttus? Recent government dvertising hs encourged Austrlins to mesure their wist circumference s leding indictor of potentil helth issues the How do you mesure up? Progrm. 13 This follows yers of focus on BMI mesures which llow consumers to understnd if they re underweight, overweight, obese or t helthy weight. Perhps consumers need more regulr nd more sophisticted mesures? Interestingly, mny consumers reported tht they do use medicl devices to trck elements of their helth sttus. Overll, fourteen percent (14%) of consumers use medicl devices to cpture medicl or helth dt t home. Men use medicl devices to cpture medicl dt t home more thn women (15% versus 13%) nd people over 65 yers use medicl devices t home gret del more (27%) thn those under 65 yers (14% for ges nd 5% for ges 18-34). People without children lso use medicl devices more thn those with children (17% versus 9%). People not in pid employment use devices more thn double for those in full or prt time work. 20 CSC Helthcre reserch report rising tide of expecttions

21 struggling to connect the dots The ptient-clinicin informtion dilemm 3. is it problem with ccess to pproprite cre t the right time? Perhps consumers re uninformed with respect to wht good helth involves. However, consumer ignornce towrds good helth is not due to lck of ccess to helthcre providers. Austrlins see n verge of two different clinicins yer. Overll ech Austrlin consumer hs n verge of five clinicin visits nnully, which is more thn both the United Sttes (US) nd the United Kingdom (UK). Sixty percent (60%) of ll United Sttes (US) dults hve three or less clinicin visits yer 14 nd residents of Gret Britin verge round four GP visits per yer. 15 If Austrlins re seeing clinicins more regulrly thn consumers from other Western ntions, then some obvious questions present themselves: Are consumers visiting the wrong helthcre providers? Are consumers witing until the helth problem is too severe? Are consumers voiding nnul/regulr check ups needed for prevention nd erly detection of problems? Are the visits to helthcre providers too short? Sttistics show tht the verge GP consulttion lsts 14.9 minutes. 16 Perhps nother contributor could be insufficient fce-to-fce time? Ptients wnt more time with their doctor. Doctors lso wnt more time with ptients. Qulity cre demnds tht doctors hve the opportunity to develop reltionships with their ptients, nd tke the time to understnd not just their symptoms, but the whole person. 17 my doctor just tells me to lose weight. One of the diseses I ve got is weightrelted. He keeps telling me to lose the weight. Consumer 4. how re ptients obtining informtion nd eduction? Consumers re ultimtely responsible for their own helth nd need to understnd their role in being helthy most helth decisions re mde in the home therefore equipping consumers with the right informtion t the right time should llow consumers to mke better informed decisions. Is there lck of ptient eduction cross the country? According to the 2008 AIHW survey, 18 less thn two percent (2%) of helthcre expenditure ws for preventive services or helth promotion. There re some clinicins tht do educte ptients nd believe the ptient could be ignoring (wilfully or otherwise) the recommended tretment. An obvious further question is whether consumer helth eduction is delivered in wy consumers understnd nd will proceed with? Is there generl lck of understnding s to wht it mens to be helthy nd how to engge in helthy lifestyle, or is it just tht they do not wnt to chnge their behviour? i m not entirely sure tht we ve relly given people the tools to llow them to improve their helth... you cn t just leve it s three nd five [fruit nd vegetbles per dy]. Clinicin A lot of the preventtive messges hve hit home, it s cse of whether they ll implement them. Clinicin CSC Helthcre reserch report rising tide of expecttions 21

22 in the united sttes (US), the verge ptient hs t lest 200 pieces of pper in lmost 19 different loctions. 19 Insight 1: Highlights 5. do consumers wnt more control nd the right to choose? The survey reconfirmed commonly held view tht Austrlins derly vlue their independence nd the right to decide. Albeit generlity, feedbck from clinicins nd consumers shows tht when it comes to helthcre, the importnce of choice nd control by consumers is n ccurte perception. For exmple, when sked if they were in fvour of it being mndtory for every Austrlin to enrol with single Generl Prctitioner (GP), Austrlins were overwhelmingly (93%) ginst the pproch. Only six percent (6%) were clerly in fvour. Clinicin ttitudes towrds mndtory versus optionl Generl Prctitioner (GP) enrolment were mixed. Some clinicins greed with consumers tht they should hve choice; others thought single point of contct to understnd ptient s medicl needs mkes more sense. Still others hve chnged their view from no wy to yes, if voluntry. 89% % % 52% 50% 6% Austrlins believe they tke ction to mintin or improve their helth Averge number of different doctors seen by ech Austrlin dult in the pst 12 months Averge number of doctor visits per Austrlin dult in the pst 12 months; 4.5 visits for men nd 5.1 visits for women Adults 65 yers nd bove who hd 13 or more doctor visits lst yer Averge number of doctor visits in the pst 12 months by lower income ustrlins (6.3 visits) compred to middle (4.3) or high income (4.1) Austrlins personlly keep some form of medicl informtion or helth record. Hlf of this eighty-six percent (86%) shre the informtion with their doctors Austrlins who do not keep records becuse it is not necessry for their cre Austrlins who keep dt nd shre the informtion with their Helthcre providers Austrlins gree with mndtory enrolment with one GP 22 CSC Helthcre reserch report rising tide of expecttions

23 struggling to connect the dots The ptient-clinicin informtion dilemm supporting nlysis Bsed on the survey responses, lmost nine in ten Austrlins believe they tke ction to mintin or improve their helth. A lrger proportion of women (92%) thn men (86%) believe they tke positive ction to improve or mintin their helth Ninety-six percent (96%) of dults over 65 yers old believe they tke positive ction to improve or mintin their helth Ninety-two percent (92%) of people not in pid employment believe they tke ction to improve or mintin their helth. This is slightly more thn the eighty-seven to eighty-eight percent (87-88%) of those people in full or prt time work. Your good decent Aussie mle tkes no interest in looking fter his helth. His culturl trining tells him not to show ny wekness. If they weren t mrried they d probbly never get ny ttention to their helth t ll it s their wives tht encourge them to tke ction. Clinicin Figure 2: do you tke ction to improve or mintin your helth? No I do not tke ction to improve or mintin my helth (10%) Don t know (1%) The United Sttes (US) hs similr helth perceptions: Sixty-one percent (61%) of dults > 18 yers re overweight or obese million dults nd children hve dibetes, 57 million hve pre-dibetes 21 However, sixty-one percent (61%) of dults indicted they were in Excellent or Very Good heth, twenty-six percent (26%) were in Good Helth. 22 Eighty-six percent (86%) of Austrlins keep some form of medicl documenttion. Most people keep copies of lbortory test results, rdiology reports nd eductionl informtion (83%), the mjority of which is in pper formt. Figure 3: do you personlly keep some form of medicl informtion* or helth record? *helth diry, mood or mentl diry, test results such s X-rys, other documenttion given to you by helth providers. Yes (86%) No (14%) A smll percentge (14%) lso document informtion such s vitl signs nd glucose levels, predominntly using hndwritten logs. More women keep test results nd x-ry imges (83%) thn men (72%) More women keep eductionl documenttion (60%) thn men (47%) Fourteen percent (14%) of Austrlin dults use medicl devices to cpture medicl dt t home, with people 65 yers nd over using medicl devices t home gret del more (27%) thn those under 65 yers (14% for ges nd 5% for ges 18-34) People without children (ged <18 yers) lso use medicl devices more thn people with children (17% versus 9%). People not in pid employment use devices more thn double for those people in full or prt time work Fifty percent (50%) of Austrlins who keep records of medicl informtion shre this informtion they collect with their helthcre providers, consistently cross ge groups. However shring informtion with their Helthcre provider is more common with women (46%) compred to men (39%) Of the Austrlins who do not keep records, over fifty percent (50%) sy it is becuse it is not necessry, consistently cross ll ge ctegories. However, differences emerged bsed on loction; of the 153 consumers surveyed from Western Austrli, seventy-five percent (75%) did not think it ws necessry, compred to forty percent (40%) of the 201 survey prticipnts from Queenslnd. Yes I tke ction to improve or mintin my helth (89%) CSC Helthcre reserch report rising tide of expecttions 23

24 struggling to connect the dots The ptient-clinicin informtion dilemm the ptients need to trust tht the shring of informtion is in their interest. Clinicin the most tngible short term benefits re going to come from shring llergies nd test results. Clinicin i never underestimte the knowledge of my ptients... prticulrly those with chronic disese... of the knowledge of the impct of tht disese on their life. Clinicin Austrlins visited their doctors n verge of lmost 5 times in the pst yer. Overll, women go to the doctor (5.1 visits) more thn men (4.5 visits). Full-time or prt-time working dults visited the doctor up to 4 times lst yer, wheres non-working nd the elderly hd more thn 6 visits In ddition, eight percent (8%) of the Austrlin popultion hd doctor visits in the pst yer nd ten percent (10%) of Austrlins hd 13 or more doctor visits over the pst 12 months. These visits could be to Generl Prctitioners (GPs) or Specilists. Figure 4: in totl, how mny times hve you visited doctor in reltion to your own personl helth in the lst 12 months? 1-3 visits (40%) None (9%) 4-6 visits (27%) Don t know (1%) 13 or more visits (10%) 7-9 visits (5%) 10 to 12 visits (8%) Our survey results showed tremendous greement (93%) with the ide of voluntry enrolment with GP. Other sttistics include: Only six percent (6%) of Austrlins think enrolling with one GP should be mndtory A lrger proportion of older dults (65+ yers) thought it should be mndtory to enrol with one GP (8%) compred to younger dults (5%) Slightly more of the lower income household (below $40,000 per yer) respondents thought it should be mndtory to enrol with one GP (10%) thn higher household income respondents (5%) there were no significnt differences in ttitudes towrds mndtory GP enrolment bsed on geogrphic loction. Support for nd ginst the proposed electronic helth record hd no significnt correltion with ttitudes towrds mndtory GP enrolment. i ve got very good GP so I get referred to good Specilists. Sometimes the doctors hven t been s open nd we ve hd to chnge. Consumer Clinicin opinions towrds mndtory nd optionl GP enrolment were mixed. i think it is very helpful for us to hve single point of contct... the role of the GP hs been wtered down by this whole Medicre push... t the end of the dy it needs to be understood tht the GPs re the core of the hub, nd s Specilists we re just one spoke. Clinicin i would gree with optionl. I would feel unesy with ny concept of ptient hving to return to the sme doctor. Clinicin my views hve chnged. I would hve been no wy, never... if it is voluntry, reversible nd brings with it benefits tht you wouldn t get otherwise I would support it. Clinicin People in this country hve high degree of trust in their chosen helth professionl. Clinicin As long s they (the primry GP) doesn t block wht the ptient needs. Clinicin 24 CSC Helthcre reserch report rising tide of expecttions

25 Insight 2 A Bsic Austrlin Right Electronic Helth Records A question of responsibility nd investment CSC Helthcre reserch report rising tide of expecttions 25

26 this survey ws conducted in Mrch 2010, prior to mjor strtegic helth reform nnouncements by the government nd funding of these reforms vi the federl budget. Included in the budget ws the provision of $466.7 million over two yers to estblish the key components of the personlly controlled electronic helth record system for Austrli. 23 Therefore, wreness of proposed e-helth inititives my hve incresed since the survey ws conducted. An objective of the survey ws to determine consumer wreness of individul electronic helth records nd their ttitudes nd ppetite towrds introduction of this e-helth inititive. Consumer wreness nd support When sked bout the proposed introduction of n individul electronic helth record, more thn hlf of the consumers surveyed were yet to her of this concept. Yet despite the lck of fmilirity with this proposed e-helth inititive, consumers were generlly supportive towrds the introduction of n individul electronic helth record, with lmost two thirds being in fvour of individul electronic helth records. ech time you go to new doctor you tell him wht hs been done previously, like wht tests nd the results. Consumer Low wreness is not surprising given e-helth is firly new focus for Austrli, with miniml minstrem press coverge. Further, much of the industry is still pperbsed nd Austrli s helth outcomes re generlly positive. Therefore, the Austrlin popultion is generlly unwre of how e-helth cn help trnsform the industry nd how e-helth cn help their own role in terms of self mngement of their helth nd their fmily s helth. To dte, there hve been limited opportunities for Austrlins to see tngible e-helth inititives such s shred electronic helth records. As prt of locl e-helth strtegies, some Austrlin jurisdictions (such s stte governments) hve commenced investing in the introduction of electronic helth records in vrious forms (e.g. in NSW the HeltheLink pilot, in the Northern Territory the Shred EHR progrm), however the presence of these inititives did not correlte with n incresed wreness stte-wide mongst consumers. All jurisdictions within Austrli hve been investing in the development of ntionl e-helth building blocks through the Ntionl E-Helth Trnsition Authority (NEHTA); however it is unlikely tht the Austrlin public is wre of the extent of this ctivity or s yet, wht it mens. As prt of the recent United Sttes (US) helth reforms, 24 US$36 billion hs been set side for helthcre informtion technology such s certified electronic heth record technology. This is lso used to provide incentives for clinicins nd hospitls who purchse nd use electronic helth records in n effort to ensure e-helth inititives commence or continue. Clinicins re incentivised to use electronic helth records nd comply in wys tht directly improve ptient cre. 26 CSC Helthcre reserch report rising tide of expecttions

27 A Bsic Austrlin Right Electronic Helth Records A question of responsibility nd investment How much re consumers prepred to py for e-helth? Mny Austrlins support the introduction of n individul electronic helth record but, s yet, re not willing to personlly py for such record. The minority of Austrlins (27%) who re prepred to contribute to the cost of n electronic helth record re interested in pying no more thn $50 per yer. Interestingly, most clinicins (but not ll) interviewed were willing to py for n individul electronic helth record. It is well cknowledged tht most GPs, nd smller percentge of Specilists, hve lredy invested substntilly to set up their versions of e-helth technologies nd bseline infrstructure, in mny instnces with government finncil support, nd in some instnces certin clinicl leders re subsidising the investments of fellow clinicl collegues. Further, comments from clinicins indicte tht e-helth technology hs gone through vrious stges of mturity nd is only now pproching stge t which clinicins re stisfied with usbility nd functionlity. Further, hospitl constructions re now tking into ccount the wireless nd other infrstructure needs to support e-helth. i personlly pid for [ secure messging product] to be set up in 100 Specilist rooms... to enble secure informtion shring... t cost to me of $25,000. Clinicin the hrd-wiring of this [purpose built specilist centre] building could not hndle high speed internet... so we ve hd to use 3G... it d be wste of time to rely on dil-up. Clinicin i rn my own excel nd ccess nd then thought I need pckge. I bought one. It ws dog. I ended up throwing it out of the prctice. Clinicin Considering less thn hlf of Austrlins (44.7%) re prepred to py for privte helth insurnce cover, 25 it should come s no surprise tht Austrlins re hesitnt to contribute finncilly to n e-helth concept bout which they know little. Austrlins re ccustomed to helth system perceived s publicly finnced nd freely vilble. Therefore, further personl finncil contribution to helth system (commonly perceived to be the Government s finncil responsibility) is not regrded s pproprite. CSC Helthcre reserch report rising tide of expecttions 27

28 However, the reluctnce to py n nnul fee for n electronic helth record seems to contrdict the fct tht mny Austrlin consumers lredy volunteer significnt mounts of money to self-mnge spects of their helth online. For exmple, WeightWtchers Online costs pproximtely $399 per yer for use of online tools to set personlised gols, trck personl weight loss progress nd ccess or crete helthy recipes nd workout plns. 26 Similr progrms include The Biggest Loser (Online) Diet Club where progrms rnge from round $50 for month to $240 per yer. 27 This multi-billion dollr commercil mrket my demonstrte some potentil for personl electronic helth records in Austrli. Understnding wht motivtes consumers to invest in personl electronic helth records nd how they re successfully being used could be fruitful nd informtive further reserch. There re implictions for the government policy environment in reltion to public wreness nd eduction; dditionlly how to provide policy signls to stimulte the privte sector to relise opportunities in helth industry trnsformtion by innovtive investing in the emerging e-helth mrket. Further, s outlined in the Ntionl Helth nd Hospitls Reform Commission (NHHRC) report in 2009 A Helthier Future for ll Austrlins, this finding in reltion to Austrli s willingness to py or otherwise for electronic helth records hs implictions for softwre nd other IT compnies trgeting this mrket. encourging people to own their e-helth record nd requiring tht helth cre providers view nd contribute key informtion to this record will drive ptient-centred mrket for clinicl systems, pplictions, nd storge repositories s consumers choose provider (nd providers choose vendor) who hs the cpcity. 28 We believe tht the rpid development of new IT pplictions required cross the helth sector to give people the opportunity to hve n electronic helth record is best undertken by commercil IT developers in n open competitive mrket. 29 The Federl Government s e-helth Strtegy from 2008 hs been reported s estimting the overll cost of e-helth s pproximtely $1.6 billion which is pproximtely one percent (1%), or less, of nnul helthcre expenditure. This equtes to pproximtely $76 per Austrlin consumer in one yer. Who should drive nd fund e-helth for Austrli? In terms of who should mke the finncil contribution to fund e-helth, Austrlins believe tht the Federl nd Stte governments should tke the led role in finncil provision of electronic helth records. However, significnt mjority of Austrlins regrd the privte helth insurers s hving n importnt responsibility for finncilly contributing to these e-helth relted services. Interestingly, the percentge of Austrlins in fvour of the privte helth insurnce industry contributing to the costs of electronic helth records is higher thn the percentge of Austrlins who hold privte helth insurnce (63% in fvour of the privte helth insurnce industry contributing, nd only 44.7% of Austrlins hold privte helth insurnce). 30 This reserch finding indictes tht Austrlins see privte helth insurnce compnies with bigger nd more publicly ccepted role to ply in e-helth thn perhps previously thought. 28 CSC Helthcre reserch report rising tide of expecttions