Information Management

Transcription

1 AHHA Natinal Health Plicy Rundtable Discussin Paper Infrmatin Management Prepared by: The Australian Healthcare & Hspitals Assciatin and The Health Infrmatics Sciety f Australia Cntact: Ms Prue Pwer Executive Directr Australian Healthcare and Hspitals Assciatin P: M: ppwer@aushealthcare.cm.au ABN: The views expressed in this paper are thse f AHHA and nt necessarily thse f individual participants Australian Healthcare & Hspitals Assciatin 2008

2 Cntents CONTENTS INTRODUCTION RECOMMENDATIONS SUPPORTING A SUSTAINABLE HEALTH SYSTEM RECOMMENDATIONS BACKGROUND AND ISSUES INTRODUCTION THE SCOPE OF HEALTH INFORMATION MANAGEMENT CURRENT ISSUES FOR AUSTRALIA BASIS OF THE RECOMMENDATIONS IM-1 INFRASTRUCTURE POLICY BASIS ('THE NEED') RECOMMENDATIONS ISSUES OUTCOMES COST CONSIDERATIONS Prs Cns IM-2 STANDARDISED MESSAGING POLICY BASIS ('THE NEED') RECOMMENDATIONS OUTCOMES COST CONSIDERATIONS Prs Cns IM-3 COMMON REGISTRY SERVICES POLICY BASIS ('THE NEED') RECOMMENDATIONS OUTCOMES COST CONSIDERATIONS Prs Cns IM-4 NATIONAL LIBRARY FOR HEALTH POLICY BASIS ('THE NEED') RECOMMENDATIONS OUTCOMES COST CONSIDERATIONS Prs AHHA Natinal Plicy Rundtable Infrmatin Management 2

3 7.5.2 Cns IM-5 NATIONAL INFORMATION MANAGEMENT CONSENSUS PLAN POLICY BASIS ('THE NEED') RECOMMENDATIONS OUTCOMES COST CONSIDERATIONS Prs Cns IM-6 CONSISTENT REGULATORY ENVIRONMENTS POLICY BASIS ('THE NEED') RECOMMENDATIONS OUTCOMES COST CONSIDERATIONS Prs Cns IM-7 ELECTRONIC MEDICATION MANAGEMENT POLICY BASIS ('THE NEED') RECOMMENDATIONS OUTCOMES COST CONSIDERATIONS Prs Cns APPENDIX A - ACKNOWLEDGEMENTS...34 AHHA INFORMATION MANAGEMENT PRIORITY GROUP...34 CONTRIBUTORS VIA TELECONFERENCE OR APPENDIX B MEMBERS OF THE COALITION FOR E-HEALTH...35 CONSUMERS & PATIENTS...35 HEALTH COLLEGES, SOCIETIES & ASSOCIATIONS...35 INFORMATICS SOCIETIES, ASSOCIATIONS & RESEARCH UNITS...35 STANDARDS DEVELOPMENT & TESTING ORGANISATIONS...36 AHHA Natinal Plicy Rundtable Infrmatin Management 3

4 1. Intrductin The Australian Healthcare and Hspitals Assciatin (AHHA) has cnvened three grups f experts, clinicians and academics t develp practical plicy ptins acrss a range f areas, cvered by: Natinal Benchmarking and Data; Infrmatin Management; and Service Integratin. The Infrmatin Management Pririty Grup is chaired by Dr Michael Legg, President f the Health Infrmatics Sciety f Australia (HISA), and supprted by Dr David Mre and Mr Richard Dixn-Hughes als f HISA. The Infrmatin Management Pririty Grup has drawn n the input f a significant number f health prfessinals invlved at the frntline delivery f subacute and primary health care services frm acrss Australia, as well as health infrmaticians, academics and service managers (see Appendix A). AHHA Natinal Plicy Rundtable Infrmatin Management 4

5 2. Recmmendatins This paper identifies discrete prjects that culd be readily implemented in the shrt t medium term. All f the prjects are aimed at supprting a mre sustainable health system by the deplyment f apprpriate applicatins, appraches and infrastructure based n infrmatin and cmmunicatins technlgy (ICT) at an estimated cst f up t $300 millin ver the next few years. 2.1 Supprting a sustainable health system In recmmending the prjects in this paper, we recgnise that the health system is currently under stress and has bth wrkfrce and demand pressures building. There are sme discrete prgrams that culd help in the shrt t medium term that ffer high value at relatively lw risk. The advice prvided here hwever shuld be seen in the cntext f it being a prelude t a majr set f undertakings that will require cmprehensive planning and strng stakehlder engagement t succeed. Such a set f undertakings may cst in the rder f $10 t $20 billin, take 10 t 15 years and wuld be the fcus f the cnsensus plan put frward in Recmmendatin IM-5 belw. The estimate fr Australia f $10-20 billin is supprted by the wrk f McKinsey and C in reviewing glbal e-health initiatives fr Canada 1. It is mre likely t be at the higher end f the range. Hwever, a significant prprtin f this investment is required in any event t supprt State pririties, but it can be much better targeted. It seems clear frm the experience elsewhere that substantial initial investment is required befre substantial returns are seen but nce this investment threshld is passed the returns far exceed the csts. Frm being an early leader in its ability t manage and use health infrmatin, Australia is nw increasingly falling behind cmparative cuntries such as the UK, Canada and the US. The Australian Gvernment has a critical rle in establishing the plicies, prgrams and health infrmatin infrastructure needed t address this situatin. The recmmendatins being put frward here address this grwing gap and are cnsistent with recent brad Australian Gvernment undertakings, specific ALP plicy and the Principles f the newly established Natinal Health & Hspitals Refrm Cmmissin. 2.2 Recmmendatins IM-1 IM-2 Accelerate the current health infrmatin infrastructure wrk prgram, establish clear milestnes and prvide rutine reprting t the cmmunity n prgress; Fund the natinal standardisatin f existing messaging fr pathlgy and radilgy fr bth public and private sectr and use this as a cmmunicatin 1 AHHA Natinal Plicy Rundtable Infrmatin Management 5

6 backbne t the cmmunity fr subsequent upgrading and expansin including fr transfer f care dcuments (discharge summaries, clinical letters, specialist referrals); IM-3 IM-4 IM-5 IM-6 IM-7 C-rdinate and fund the develpment f cmmn registry services fr clinical, public health and surveillance purpses that can be used lcally, and at the State/Territry and natinal levels; Fund the develpment f a Natinal Library fr Health that prvides t all Australians quality-assured timely knwledge in electrnic frm; Supprt and where necessary fund the develpment f a natinal cnsensus plan fr effective management f health infrmatin, which is resurced and has gvernance arrangements that are widely supprted by bth the private and public sectrs; Ensure the State/Territry and Cmmnwealth regulatry envirnments allw fr the develpment and uptake f persnal health recrds; and Establish a fund t prmte the uptake f electrnic medicatin management in the acute care sectr. AHHA Natinal Plicy Rundtable Infrmatin Management 6

7 3. Backgrund and Issues 3.1 Intrductin Australia, like the rest f the develped wrld is facing a lming crisis in its health care system frm an unprecedented and simultaneus bulge in demand while there are wrsening shrtages in skilled wrkers needed t meet this demand. Out f the rdinary imprvements in prductivity will sn be required just t maintain current service levels in many areas. This can nly happen if the skills f healthcare prfessinals can be leveraged and healthcare cnsumers becme mre active and infrmed participants in healthcare prcesses. Effective management and delivery f better health infrmatin is critical t bth these strategies. Better management and availability f healthcare infrmatin is, hwever, increasingly seen as an imprtant weapn against disease in its wn right and there is munting evidence that bth health utcmes and cnsumer satisfactin can be enhanced by imprving the way that health infrmatin is managed. In the shrt t medium term, it is als the tl mst likely t enable imprvement f the imperfect distributin f healthcare services which disadvantages Indigenus, rural and pr Australians. Effective management and use f health infrmatin is nw recgnised as a key natinal pririty in mst develped cuntries, with Heads f Gvernment having expressed their supprt in the US 2, the UK 3, Canada 4 and much f Eurpe 5. Frm being an early leader, Australia is nw lagging behind cmparative cuntries such as the UK, Canada and the US in terms f prgress twards apprpriate Health IT deplyment and use. The Australian Gvernment has a critical rle in establishing the plicies, prgrams and health infrmatin infrastructure needed t address this situatin. The prpsals here are cnsistent with recent brad Australian Gvernment undertakings, specific ALP plicy and the Principles f the newly established Natinal Health & Hspitals Refrm Cmmissin The scpe f health infrmatin management There is ften a prblem with achieving a shared understanding f just what is meant by terms like health infrmatin management, e-health r health infrmatics. The terms are ften used interchangeably and while there are many definitins, mst end up reducing t the management f infrmatin in the health sectr alas ffering little insight. In its visin statement, HISA has described characteristics f a health care system where health The challenge fr the NHS is t harness the infrmatin revlutin, and use it t benefit patients. Rt. Hn. Tny Blair, All Our Tmrrws Cnference, Earls Curt, Lndn. 2nd July See AHHA Natinal Plicy Rundtable Infrmatin Management 7

8 infrmatin is managed ptimally 7 in an attempt t cnvey mre clearly the depth and breadth f what is behind these wrds. The visin is: Engaging Cnsumers Patients are fully engaged in their wn healthcare, supprted by infrmatin and tls that enable infrmed cnsumer actin and decisin making, wrking hand-in hand with healthcare prviders. Tls that supprt cnsumer engagement are well designed and custmised t the diversity f cnsumers. These tls are integrated int the delivery f care, and are cnveniently available utside healthcare settings as well; Transfrming Care Delivery at the Pint f Care Australian health care is high quality, patient centred, fr a lifetime, and reflects a crdinated and cllabrative apprach. Cmplete, timely and relevant patient-fcused infrmatin and clinical decisin supprt tls are available as part f the prvider s wrkflw at the pint f care. High quality and efficient patient care is supprted by the deplyment and use f interperable health IT and secure data exchange between and acrss all relevant stakehlders; Imprving Ppulatin Health Electrnic healthcare data and secure health infrmatin exchange are utilised t facilitate the flw f reliable health infrmatin amng ppulatin health and clinical care systems t imprve the health status f ppulatins as a whle. Infrmatin is utilised t enhance healthcare experiences fr individuals, eliminate health disparities, measure and imprve healthcare quality and value, expand knwledge abut effective imprvements in care delivery and access, supprt public health surveillance, and assist researchers in develping evidencebased advances in areas such as diagnstic testing, illness and injury treatment, and disease preventin; Aligning Financial and Other Incentives Healthcare prviders are rewarded apprpriately fr managing the health f patients in a hlistic manner. Meaningful incentives help accelerate imprvements in quality, safety, efficiency and effectiveness. Quality f care delivery and utcmes are the engines that pwer the payment f prviders; Managing Privacy, Security and Cnfidentiality In Australia's fully-enabled electrnic infrmatin envirnment designed t engage cnsumers, transfrm care delivery and imprve ppulatin health, cnsumers have cnfidence that their persnal health infrmatin is private, secure and used with their cnsent in apprpriate, beneficial ways. Technlgical develpments have been adpted in harmny with plicies and business rules that fster trust and transparency. Organisatins that stre, transmit r use persnal health infrmatin have internal plicies and prcedures in place that prtect the integrity, security and cnfidentiality 7 AHHA Natinal Plicy Rundtable Infrmatin Management 8

9 f persnal health infrmatin. Plicies and prcedures are mnitred fr cmpliance, and cnsumers are infrmed f existing remedies available t them if they are adversely affected by a breach f security. Cnsumers trust and rely upn the secure sharing f healthcare infrmatin as a critical cmpnent f high quality, safe and efficient healthcare; and Plicy and Implementatin Plicy develpment and implementatin bdies, bth gvernment and private deliver clear and insightful leadership f e-health prgrams within the health sectr. They have a deep understanding f the cultural and peratinal cmplexities f the area and ensure that prgrams are apprpriately structured and funded t be successful. 3.3 Current issues fr Australia The fllwing are imprtant high rder natinal issues relating t health infrmatin management that require early attentin: Prly planned It is recgnised that the Australian Health Ministers have initiated develpment f a Natinal E-Health Strategy and Plan. Nevertheless, in the absence f either a plan r a prcess fr develping ne, there is widespread cncern that further pprtunities may be lst. It is als widely believed that fr any plan t be successful it must have brad supprt and secure real cmmitment frm key stakehlders. Fr this t be achieved, bth develpment and implementatin f the plan must be gverned by prcesses that are transparent and allw apprpriately brad participatin by all stakehlder grups; Fragmented There is a histry f verlapping, uncrdinated and ften small-scale State/Territry and Cmmnwealth prjects with the inevitable inefficiency and slw, expensive prgress; Insufficient expertise There is a lack f recgnitin f the dmain f knwledge which is health infrmatics and the expertise required t design and implement the large scale changes needed fr effective management and use f infrmatin in the health sectr; Wrkfrce shrtage Australia des nt have enugh trained peple t cmplete the current infrmatin infrastructure wrk. Rather than ramping up training prgrams ur universities have been winding them back with sme prgrams clsing in the last tw years and thers being significantly reduced r mdified. While it is recgnised that market frces must, t an extent, dictate training there als has t be sme frward thinking abut what might be needed in the (near) future r this will limit the ptins available; Nn-gvernment sectr nt included Much f healthcare in Australia is delivered by nn-gvernment rganisatins specifically primary care, acute care (particularly AHHA Natinal Plicy Rundtable Infrmatin Management 9

10 surgery), aged care, pharmacy, pathlgy and radilgy. Integratin between the sectrs is critical t health system imprvement; and Lack f engagement There is a widely held perceptin in the health care cmmunity that there has been a significant lack f visin, supprt and engagement by Gvernments in the health infrmatin dmain, especially in relatin t prgrams that address: Private and cmmunity sectrs; Prfessinal educatin and assciatins health infrmaticians, healthcare prviders, cmputer prfessinals; The health sftware industry; and Cnsumers as users f health infrmatin Basis f the recmmendatins This advice identifies discrete prjects that culd be readily implemented in the shrt t medium term. The advice is prvided in the cntext f it being a prelude t a majr set f undertakings that will require cmprehensive planning and strng stakehlder engagement t succeed. While the initial recmmendatins can be addressed fr arund $300 millin ver the next few years, achievement f the brader cntext will require firm, preferably bi-partisan and nging supprt frm plitical leadership at all levels and may cst in the rder f $10 t $20 billin and take 10 t 15 years. Identifying the required utcmes, undertakings and investments wuld be the fcus f the cnsensus plan put frward in Recmmendatin IM-5. The estimate fr Australia f $10-20 billin is supprted by the wrk f McKinsey and C in reviewing glbal e-health initiatives fr Canada 8. It is mre likely t be at the higher end f the range but a significant prprtin f this investment is required in any event t supprt State pririties but can be much better targeted. It seems clear frm the experience elsewhere that substantial initial investment is required befre substantial returns are seen but nce this investment threshld is passed the returns far exceed the csts. 8 AHHA Natinal Plicy Rundtable Infrmatin Management 10

11 4. IM-1 Infrastructure Accelerate the current health infrmatin infrastructure wrk prgram, establish clear milestnes and prvide rutine reprting t the cmmunity n prgress 4.1 Plicy basis ('the need') There is wide cnsensus that the wrk prgram being undertaken by the Natinal E-Health Transitin Authrity (NEHTA) t build infrastructure fr e-health in Australia has many f the right cmpnents 9 but cncerns are als widely held abut the slw rate f prgress, NEHTA s level f disengagement frm the health care and health infrmatics cmmunity and apparent lack f respnsiveness t their needs 10. Essential elements f an infrmatin infrastructure as seen by the AHHA Pririty Grup are in the areas f: Privacy; Persn identifiers; Prvider identifiers; and Interperability infrastructure that facilitates: Interperatin between health messaging prviders; Secure exchange f clinical dcuments; Bradband cmmunicatin; and Cnfrmance testing f standards-based systems interperability. Cmpnents f this wrk are being undertaken by NEHTA and sme were als addressed by the frmer Cmmnwealth Gvernment s Bradband fr Health Prgram; hwever, the lack f a widely supprted natinal apprach t these areas has led t a prliferatin f initiatives being undertaken in different ways by varius public and private sectr rganisatins, each seeking t address their wn particular needs. NEHTA s capacity t deliver these infrastructure elements in a timely manner needs t be assured in light f the recent Bstn Cnsulting Grup review and very recent departures f key persnnel. This assurance needs t be cupled with much greater penness f NEHTA in its planning and prcesses cmpnent which wuld encurage a brad crss-sectin f stakehlder rganisatins t wrk cllabratively with them and, als, g sme way t addressing ne f NEHTA s prblems, namely attracting and retaining suitably qualified staff t get the wrk dne AHHA Natinal Plicy Rundtable Infrmatin Management 11

12 4.2 Recmmendatins It is recmmended that the fllwing milestnes be adpted, that there be an pen review f the related prgrams and, where necessary, crrective actin be taken if the fllwing milestnes cannt be met, and further that a public prject reprting system be established t shw prgress. Table 1: Milestnes fr e-health Pririty Tasks Time Unifrm privacy plicy Natinal plicy determinatin End 2008 Persn identifier Intrductin f legislatin fr a natinal framewrk Specificatins fr web service Mid 2009 End 2008 Identity web service Mid 2009 Tkens (pssibly chsen by cnsumers) Mid 2010 Prvider identifier Identity web service Mid 2009 Infrastructure t supprt interperability between health messaging prviders Apprach agreed End 2008 Implementatin Mid 2009 Infrastructure fr secure Specificatin End 2008 exchange f clinical dcuments Implementatin Mid 2009 Bradband Cnfrmance testing f standards-based systems interperability Universal health sectr cverage including remte areas Practical Australian apprach cgnisant f internatinal wrk is identified and accepted by relevant stakehlder cmmunities Mid 2010 Mid 2009 The milestnes have been tested fr authenticity and practicality and are seen by AHHA as critical t the prgress f e-health in Australia. AHHA Natinal Plicy Rundtable Infrmatin Management 12

13 4.3 Issues The AHHA Pririty Grup als identified the fllwing issues in relatin t the health infrmatin infrastructure develpment: Privacy: Trust is an imperative t a successful e-health system; Run pt-ut systems with a high degree f integrity r make pt-in easy; This may becme less f an issue with Ggle, Micrsft and ther leading prviders mving int the area and bringing cnsumers n bard; Cnsumer educatin as t the benefits f e-health; Persn identifier: This abslutely critical t many f the imprvement initiatives prpsed in this and the assciated papers; There shuld be nly ne natinal gvernment persn identificatin system; Tkens used t imprve security f identificatin culd vary and be up t the chice f the cnsumer; Prvider identifier: Needs t include lcatin identifier; Shuld be separated frm credentialing which can be jined t and accessed by prvider identifier later; Interperability infrastructure: Interperatin between health messaging prviders can be prgressed via alternative paths: Cmmn API n desktps; Regulatry apprach fr exchange t exchange cmmunicatins; Bradband: Ensure needs fr health sectr are addressed by the natinal brad band initiative; Cnfrmance testing: Open gvernance with brad engagement; Practical Australian apprach that is cgnisant f internatinal standards develpment and appraches; and Cnfrmance testing needs t be linked t the safety and quality regulatry framewrk. AHHA Natinal Plicy Rundtable Infrmatin Management 13

14 4.4 Outcmes Achieving these infrastructure milestnes is seen as critical by the AHHA Pririty Grup. The actins prpsed here will g a lng way tward addressing the cncerns held by clinicians and the infrmatician cmmunity abut delivery in a timely manner and will act t imprve the penness f the prcess. These actins in turn will imprve buy-in and cperatin and make it mre likely that the milestnes are achieved. 4.5 Cst The elements that NEHTA have carriage f the current health infrastructure wrk appear t be adequately funded with NEHTA reprting under-budget expenditure. Additinal funds may be required t extend cverage f bradband frm that already dealt with by the Gvernment s Natinal Bradband electin prmise which undertakes t prvide 98% cverage. While 98% prbably addresses all substantial pints f healthcare delivery, $20 millin pa may be required t handle utliers. We calculate a ne ff payment f $10 millin shuld als be budgeted t fund the develpment f interperatin between present health cmmunicatin prviders. 4.6 Cnsideratins The fllwing are seen as the cnsideratins fr and against the recmmendatin: Prs The fundamental building blcks get the attentin they deserve; Greatly imprves the buy-in required fr successful implementatin; Mdest amunts f additinal funding are required; and An pprtunity t shw tangible results frm State-Cmmnwealth c-peratin and cllabratin with private sectr interests after a slw start Cns May be seen as duplicatin f a review already undertaken; May be a prblem with States/Territries if Cmmnwealth is seen t becme t dminant; and NEHTA has an acting CEO and the timing may be cnsidered inapprpriate. AHHA Natinal Plicy Rundtable Infrmatin Management 14

15 5. IM-2 Standardised Messaging Fund the natinal standardisatin f existing messaging fr pathlgy and radilgy fr bth public and private sectr and use this as a cmmunicatin backbne t the cmmunity fr subsequent upgrading and expansin including fr transfer f care dcuments (discharge summaries, clinical letters, specialist referrals) 5.1 Plicy basis ('the need') Bth Gvernment and the diagnstic services sectr are frustrated at the apparent lack f prgress tward widespread acceptance and implementatin f standardised secure messaging fr interchange f health infrmatin in particular, clinical requests and rders, results, reprts, referrals and alerts. There has been, and cntinues t be, fragmented -wrk in this area funded by varius Gvernments and ther interested grups that wuld have far greater return if it were carried ut in accrdance with a natinally c-rdinated and widely accepted blueprint. Many f the prviders in the private sectr (and specialised services in the public sectr) perate n a natinal basis and want t see natinal interperability - nt State r regin based infrmatin services. Bth public and private sectr prviders perate in similar ways, in similar markets and have a histry f wrking with ne anther. Of the health disciplines, pathlgy and radilgy have led in their use f infrmatin technlgy fr recrds and fr mre than a decade they have delivered electrnic infrmatin t their custmers. With arund 40 millin pathlgy reprts delivered electrnically last year they remain the leader in this imprtant area f e-health and have a ten year histry f successful standards develpment and implementatin and use f secure messaging. Relevant standards are in their secnd revisin, are rbust and well supprted but there are sufficient differences in implementatin t limit the pprtunities that can currently be derived frm interperability. In particular, GPs nw have the prblem f running a multiplicity f sftware prducts n their desktp cmputers in rder t receive and manage results frm different diagnstic and ther service prviders. Pathlgy and radilgy prviders have expressed their willingness t participate in a natinal standardised messaging prject; indeed they have ffered t drive such a prject. 5.2 Recmmendatins It is recmmended that the Gvernment: Fund the natinal standardisatin f messaging fr diagnstic services (pathlgy and radilgy) fr bth the public and private sectrs; Use this as a cmmunicatin backbne acrss health fr subsequent upgrading and expansin including transfer f care dcuments (e.g. discharge summaries, referrals and clinical letters); AHHA Natinal Plicy Rundtable Infrmatin Management 15

16 Develp an agreed prfile and business framewrk that allws messaging prviders t interact with ne anther. There shuld nt be different systems fr different elements f the cmmunicatins this includes fr medicatins management; and After the develpment funding, the prgram culd be funded based n utcmes that is paid per cnfrmant message. The mechanism exists t incrprate this activity int existing funding arrangements fr pathlgy and radilgy and leverage the established Quality Use Prgrams and accreditatin prcesses. Wrld-class cnfrmance testing is already available and there is cnsiderable vendr capacity as has been shwn fr the last three years f interperability demnstratins at HISA cnferences. Fr the least risk and mst benefit, gvernance f this infrastructure shuld be verseen by, r at least intimately invlve the prfessinal and/r industry assciatins within the health care dmains being serviced. 5.3 Outcmes Apart frm the bvius benefit f getting value quickly frm standardised data that can be used in existing systems fr clinical decisin supprt, the prpsed prgram wuld cnvert many f the mst utspken critics f current appraches int supprters, and wuld prvide a strategic launching pad t d as the target shter des gather the shts clser tgether (remving variatin) then mving them t the bullseye (best practice). An envirnment wuld be established that is cnducive t the realisatin f further change and imprvement in a part f the health care system that already crsses hspital-cmmunity and private-public bundaries. It imprves and leverages an existing cmmunicatin system that has been shwn t be readily extensible t brader purpses and already tuches mst aspects f health and aged care in Australia. 5.4 Cst It is estimated that this prgram wuld cst arund $20 millin t establish and arund $10 millin per annum recurrent expenditure. It is prpsed that the recurrent funding be paid n an utcmes basis (ie. per cnfrmant message) and that these arrangements be integrated int the current gvernance arrangements fr regulatin and funding f pathlgy and radilgy services. AHHA Natinal Plicy Rundtable Infrmatin Management 16

17 5.5 Cnsideratins The fllwing are seen as cnsideratins fr and against the recmmendatin: Prs Delivers standardised messaging very quickly; Leverages existing skills and infrastructure; Mirrrs what is happening in ther cuntries cuntries frm which we draw sftware, standards and skills; Buys sme time t wrk n mre radical cmmunicatins ptins such as web services delivery and prvides a smth path fr their intrductin; Cnfrmance testing and standards develpment prcesses are in place; Is supprted by pathlgy and radilgy service prviders and addresses a prblem that GPs are currently experiencing; The public private hspital cmmunity interface culd wrk quickly; and Great value fr mney cmpared with alternatives Cns Such a prgram unless carefully managed culd be anti cmpetitive fr messaging service vendrs; Requires significant buy-in frm participants t be successful but there is every indicatin that if handled prperly this wuld be frthcming; and Seen t be supprting prfiting cmmercial rganisatins at the expense f the public sectr. AHHA Natinal Plicy Rundtable Infrmatin Management 17

18 6. IM-3 Cmmn Registry Services C-rdinate and fund the develpment f cmmn registry services fr clinical, public health and surveillance purpses that can be used lcally, and at the State/Territry and natinal levels 6.1 Plicy basis ('the need') There are many registries already perating in Australia and there are strng needs fr mre especially in the areas f bi-surveillance security, chrnic diseases and fr diseases with rapid treatment advancement such as the bld cancers. Registries exist at the lcal, state, natinal and internatinal levels. Health related registries that Australia has r cntributes t include: Ntifiable Disease Registers (Area Health Public Health Units, State Health Ntifiable Disease Register, Natinal Ntifiable Diseases Surveillance System, CDC); Cancer Registers (eg State Registers; Cancer Preventin - Drug (DES); Screening (Pap Smear, Breast Cancer, Clrectal), Australian Bld Cancer Registry, UICC- Internatinal Unin Against Cancer, Internatinal Assciatin Of Cancer Registries (IARC)); Other Disease Registers (eg Institutin based - General Practice Registers, Hspital, Cmmunity Health; Divisins f GPs Diabetes, Cardiab; Diabetes Australia; Type 1 Diabetes Register (AIHW); ANZ Data Registry Fr Renal Disease; Mental Health); Births, Deaths And Marriage Registers (eg State Based Registries; Natinal Death Index (Draws On State Registries)); Perinatal Registers (eg State Based; Twin Register); Medical Device Registers (eg Natinal Jint Register; TGA; Manufacturers Stent, Valve); Surgical Registers (eg Patient Safety Fundatin, Hip And Knee Registries Sweden & Finland); Immunisatin & Antivenm Registers (State Qld, NT; ACIR; Antivenm Administratin; Q Fever (Qld)); Genetic Registers (eg Tay Sachs); Drug Usage and Event Registers (eg Natinal Adverse Events Register (TGA); Special Drug Registers - Diethyl Stilbestrl, HGH Human Grwth Hrmne); and Organ Dnr Registers (eg Bne Marrw). Mst existing registries are funded publicly. Mst have cmmn business requirements and much in cmmn in relatin t the cllectin, transfer, strage and analysis f data. In many AHHA Natinal Plicy Rundtable Infrmatin Management 18

19 cases the data cmes frm a cmmn surce eg, pathlgy and diagnstic imaging surces. The benefits deriving frm analysis f registry data, especially when there is the capacity t link between repsitries, is well established in Australia and yet there remain cnsiderable difficulties in data wnership, linkage and funding. Sme f this is because f less than ptimal natinal c-peratin, especially between the States and the Cmmnwealth. Bth Cancer Australia and Australian Public Health Netwrk are cnsidering natinal standardisatin and the develpment f generalised registry infrastructure fr their respective dmains. Many f the existing registries lack imprtant data needed fr plicy develpment t make the health system mre equitable including infrmatin relating t: Abriginal and Trres Strait Islanders; Cultural diversity; and Scial disadvantage. The pprtunity exists t create incentives fr the standardisatin f health recrds, terminlgy, and clinical cmmunicatins thrugh registries where there is already the regulatry envirnment needed t assure cnfrmance, and the value f ding s is well accepted by imprtant stakehlders such as cnsumers and clinicians that wuld help facilitate the change. Such an apprach wuld appear t be successful in the United States with the Centers fr Disease Cntrl and Preventin (CDC) having a majr influence n the standardisatin prcesses. 6.2 Recmmendatins It is recmmended that the Gvernment c-rdinate and fund the develpment f cmmn registry services fr clinical, public health and surveillance purpses that can be used lcally, and at the state and natinal levels. The registry services wuld include systems fr: Data cllectin feeder systems allwing fr efficient standards-based data cllectin incidental t clinical wrk; Data transfer cmmn t ther clinical messaging; Data strage addressing privacy and security; and Analysis and presentatin making it easy t get knwledge frm the infrmatin and add value. Additinal value derives frm the linkage f registries and this is better dne if their data is fit t share and fit t aggregate. AHHA Natinal Plicy Rundtable Infrmatin Management 19

20 6.3 Outcmes The fllwing are seen as utcmes f the prject: Useful clinical infrmatin that wuld be directly used in decisin supprt fr patient care such as the efficacy f treatment by new drug prtcls in cancer; Better prtectin f the cmmunity; C-rdinatin and standardisatin f existing messaging; and Imprved efficiency and effectiveness. 6.4 Cst Based n current cst estimates f $4 millin per registry in establishment csts and arund $2 millin per annum in recurrent expenditure and given the range f registries that wuld need t be accmmdated there wuld be an initial establishment cst which may be mre than $200 millin; but with subsequent savings against current and future expenditure this may reduce cnsiderably. Clear benefits, in bth direct csts and indirectly in areas such as reduced patient suffering and re-peratin, have already been demnstrated with the Jint Replacement Registry amng thers and it is expected these benefits wuld be cnsistently btained fllwing implementatin f the prgram. 6.5 Cnsideratins The fllwing are seen as cnsideratins fr and against the recmmendatin: Prs There wuld be immediate benefit by extending current registries t include clinically relevant data; Opprtunity fr stepwise implementatin; Shwn t be a very strng driver fr standardisatin (US experience); Likely t be nt unduly cstly in the end; and Meets needs as enunciated by: Security; Clinicians; Cnsumers; and Researchers Cns Prbably better dne as an extract frm a standardised shared EHR but this remains a lng way ff when the depth f detail required in such a shared EHR is taken int accunt; AHHA Natinal Plicy Rundtable Infrmatin Management 20

21 Cnsiderable effrt will be required t btain a satisfactry level f data quality fr registries; and The cancer registry wuld have t be integrated with the current Australian Cancer Grid. AHHA Natinal Plicy Rundtable Infrmatin Management 21

22 7. IM-4 Natinal Library fr Health Fund the develpment f a Natinal Library fr Health that prvides t all Australians quality-assured timely knwledge in electrnic frm 7.1 Plicy basis ('the need') Many experts nw agree that the applicatin f current health knwledge will be mre effective in addressing health prblems than any ther health technlgy 11. Evidenced based medicine is fundamental t mdern medical practice. Hwever, ensuring that all health prfessinals have access t timely, useful, relevant and high quality health knwledge t supprt evidenced-based practice is a significant challenge fr Australian health prfessinals, particularly fr thse in the private sectr. There is gd evidence that when cnsumers have access t gd infrmatin and becme engaged in their wn healthcare that health utcmes are imprved 12. Cmmunicatin between clinicians, cnsumer and carers is imprved if it is based n equal knwledge. Many studies have demnstrated gaps exist between the best evidence and cmmn practice. The use f health research findings, apprved clinical guidelines and ther quality health knwledge in prfessinal practice has the ptential t reduce undesirable variatin in practice, increase the efficiency and effectiveness f patient care and reduce unnecessary patient suffering and csts t the health care system. Bridging the evidence-practice gap acrss the health sectr therefre requires imprved access and use f health quality infrmatin by health prfessinals. Prviding access t nline surces f evidence is increasingly viewed as an effective and efficient way t deliver infrmatin t health prfessinals. The current mdel fr prviding health knwledge has wrked mderately well, particularly fr State and Territry health department emplyees. Hwever, the variability in access fr the private sectr is a significant prblem t be addressed. Anther prblem is the increasing cst f prviding the State and Territry health infrmatin services and uncertainty ver future funding currently prvided thrugh Natinal Health Develpment funds. It is likely these services will becme unsustainable in the near future. Other factrs including the grwing clinical and legal pressure n health prfessinals t practice evidence-based medicine, cnsumer expectatins, the increasing cst f prviding access t reputable knwledge alng with significant imprvement in the delivery capability f ICT, strngly supprts the need t review the ways in which health knwledge is accessed and used. 11 Sir Muir Gray, the UK NHS Chief Knwledge Officer, in an address t NICS and AHIC EDS Subcmmittee 2005 and reinfrced in keynte at Medinf in August See AHHA Natinal Plicy Rundtable Infrmatin Management 22

23 The gal f prmting evidenced-based medicine, ptential imprvements in quality and safety pssible thrugh imprved access t electrnic clinical knwledge resurces, cncerns ver the degree f accessibility, particularly in the private sectr, and issues with the sustainability f existing arrangements result in a cmpelling argument fr this prpsal. The questin needs t be asked: Can we prvide health prfessinals and cnsumers with the health infrmatin they need in a mre timely, efficient and effective way? 7.2 Recmmendatins It is recmmended that Gvernment fund the develpment f a Natinal Library fr Health that prvides t all Australians quality-assured timely knwledge in electrnic frm. This wuld invlve researching the value and need fr infrmatin prvisin fr cnsumers and prviders; identifying ptimal infrmatin prviders; develping prcuring and implementing strategies; and implementing a natinwide knwledge service that wuld be the Natinal Library fr Health. 7.3 Outcmes The virtual library bjectives wuld be t prvide: Quality, easily identified, cnsumer relevant health infrmatin. This wuld help t: Imprve treatment cmpliance; Imprve cnsumer capability t assist with their care; Partnering Reduce cnsumer anxiety; Reduce dangerus unsafe cnsumer actins; Reduce cnsumer cnfusin; Wh is caring? Wh is paying? Health practitiner relevant infrmatin, decisin supprt and guidelines. This wuld assist t: Reduce clinical errrs; Imprve prvider treatment cnsistency; Reduce prvider litigatin csts; and Imprve prvider wrk life quality. In shrt it is aimed at imprved patient safety, clinical utcmes, patient/carer satisfactin and use f resurces AHHA Natinal Plicy Rundtable Infrmatin Management 23

24 7.4 Cst We estimate there wuld be an initial prject definitin and prcurement prject cst f $2 millin fllwed by nging knwledge delivery estimated at $20 millin p.a. 7.5 Cnsideratins The fllwing are seen as cnsideratins fr and against the recmmendatin: Prs Prven t wrk; Quickly implementable with benefits increasing ver time; Prvides a natinal gd fr the health sectr; Very gd value fr mney; and Cmplements and shuld integrate with natinal/state health call centre strategies reducing the ptential fr wasteful duplicatin Cns It takes t lng t d it natinally and slws ther initiatives dwn. AHHA Natinal Plicy Rundtable Infrmatin Management 24

25 8. IM-5 Natinal Infrmatin Management Cnsensus Plan Supprt and where necessary fund the develpment f a natinal cnsensus plan fr effective management f health infrmatin, which is resurced and has gvernance arrangements that are widely supprted by bth the private and public sectrs 8.1 Plicy basis ('the need') AHHA believes that Australia lacks an agreed visin fr the health system and in particular hw it culd be imprved with better infrmatin management. Further it believes it is bth essential and urgent that there be an agreed visin and that an apprpriately resurced plan is put in place. Lack f a cherent agreed way frward (a plan) has ften led t stagnatin, wasteful and uncrdinated lcal activities including: The failure t achieve the imprvements in safety, quality and efficiency that are pssible with well executed initiatives; Wasted investments in many prjects; Fragmented and nn-interperable clinical messaging envirnment; Excessive emphasis n pilt prgrams and trials that either failed t deliver useful utcmes r were nt prgressed int prductin; Prgressively diverging interperability and data exchange capability in States and Territries; Slw prgress t achieve standardisatin despite its imprtance in a number f dmains; The lack f skilled health infrmaticians available t supprt initiatives such as thse being cnducted by NEHTA; High levels f demralisatin and frustratin amng health infrmaticians as expressed t HISA in its nline surveys; and Lss f cnfidence by the clinical cmmunity that imprvement is pssible. Incnsistent, ften ineffective and unstable leadership and gvernance structures have been a majr barrier t cnsistent steady prgress ver the last decade. Examples include: Variable Cmmnwealth and State ministerial interest and cmmitment; AHIC being disbanded and refrmed 18 mnths later, cupled with frequent changes in its rle and terms f reference; HealthCnnect prject initiated, redefined n several ccasins and then abandned; Ministerial advice surces frequently revamped, advice smetimes quite incnsistent r ignred; Frequent and significant budget underspends; and AHHA Natinal Plicy Rundtable Infrmatin Management 25

26 Issues f gvernance and perfrmance with a range f State prjects. 8.2 Recmmendatins Gvernment must supprt and where necessary fund the develpment f a natinal cnsensus plan fr effective management f health infrmatin, which is resurced and has gvernance arrangements that are widely supprted by bth the private and public sectrs. AHHA is a member f the Calitin fr e-health which is cmprised f mst f the rganisatins currently invlved in e-health in Australia. The Calitin strngly supprts the develpment f a natinal plan fr e-health. The best utcmes fr the plan will nly arise if it is develped thrugh a cnsultative prcess and is supprted by key stakehlders. The Calitin believes that it is imprtant that the plan: Be a partnership between healthcare prviders and the brader Australian cmmunity; Encmpasses services prvided by bth the private and public sectrs; Cvers the services required in each phase f a persn s life; Has a 10 year hrizn with 3 year and 6 year views; Clearly identifies all f the elements needed fr the success f the plan including cultural, rganisatinal, technical and financial aspects; Is a living dcument which is peridically mnitred and evaluated; Supprts sustainability f the health system; Has frmal prvisin fr the nging invlvement f all key stakehlders; and Has sufficient independence and apprpriate gvernance such that changes f administratin d nt delay r impede its implementatin. It is further recmmended that Gvernment: Undertake a gvernance review. Objectives f gvernance review wuld include supprt fr invlvement in the currently tendered Natinal e-health Strategy and ensuring we learn frm mistakes and successes f the past; prvide maximal cnsultatin and engagement; and leverage verseas initiatives such as AHIC 2.0 and the e-health Initiative with implementatin f a new bradly supprted gvernance framewrk by the end f 2008; Undertake a health infrmatics (HI) capability and wrkfrce review. Objectives f Capability Review wuld include develping an understanding f the current HI wrkfrce; assess adequacy f the available wrkfrce; develp ptins and appraches t ensure adequate HI wrkfrce is available as needed. The scpe wuld cver curricular and skill mix, review f available career ptins in HI and natinal teaching and training capacity. It is recmmended that recmmendatins be AHHA Natinal Plicy Rundtable Infrmatin Management 26

27 made t the natinal strategy team with an actin plan develped by the end f 2008; and Undertake Public E-Health Educatin and Awareness Prgram 8.3 Outcmes A natinal e-health cnsensus plan will result in: Imprved preparedness f all stakehlders t invest in e-health; Higher cnfidence f health sectr persnnel, addressed swiftly and with understanding; Much reduced risk f e-health agenda lsing relevance t health sectr needs; and Imprved pririty setting and benefits capture. 8.4 Cst Bth the gvernance and wrkfrce reviews we estimate wuld cst less than $1 millin and be cmpleted in 6-9 mnths. The Public Awareness Prgram needs t be planned after the strategy and business case is defined. 8.5 Cnsideratins The fllwing are seen as cnsideratins fr and against the recmmendatin: Prs Much enhanced quality f final natinal strategy and imprved implementability f strategy; Imprved cnfidence e-health can be successfully implemented; and Reduced e-health implementatin risk Cns Nne are apparent. AHHA Natinal Plicy Rundtable Infrmatin Management 27

28 9. IM-6 Cnsistent Regulatry Envirnments Ensure the State/Territry and Cmmnwealth regulatry envirnments allw fr the develpment and uptake f persnal health recrds 9.1 Plicy basis ('the need') It is vital we ensure there are n regulatry barriers t the adptin and use f Persnal Health Recrds (PHRs, ie. electrnic health recrds that are held by r fr a cnsumer, can be shared with the cnsumer s health care prviders and which can have infrmatin cllected by health care prvider input t the electrnic recrd). Reasns include: A strategic requirement t prgressively enhance cnsumer invlvement in their wn care; Increasing cnsumer interest in the cntrl and use f their persnal health infrmatin with cnsumers suffering chrnic cnditins especially interested in being able t easily cmmunicate their health infrmatin t all relevant health prfessinals and carers; An bvius need fr a natinal regulatry framewrk t prtect patient cnfidentiality and the security f persnal health infrmatin; and Increasing evidence that PHRs can assist the delivery f safer, higher quality care especially fr thse with cmplex cnditins needing chrnic care. The issues that need t be harmnised acrss Australia include: Patient recrd wnership and cntrl; Patient recrd privacy management; Recrd access cntrl bth in the rutine and emergency settings; Recrd interchange and interperability standards including the hl7 implementatin guides n plan-t-plan PHR data transfer and the cntinuity f care recrd standards; The relatinship f PHR and prfessinally held clinical recrd; Infrmatin availability and access frm Medicare Australia and health insurers; Infrmatin handling in the event f PHR prvider inslvency; Prvisin f cnsumer certainty regarding the vluntary nature f such PHRs; Identificatin f any ptentially blcking r bstructive state-based legislatin nt cnsistent with the natinal framewrk; Methds t ensure invlvement f private sectr and r Medicare Australia in PHR prvisin fr cnsumers; and Methds / Standards fr private infrmatin prviders t cntribute / feed the cnsumer PHRs. AHHA Natinal Plicy Rundtable Infrmatin Management 28

29 9.2 Recmmendatins In rder t secure a satisfactry and harmnised regulatry envirnment fr PHRs natinwide it will be necessary t develp a Natinal PHR Management, Access and Cntrl Framewrk. The steps required t develp the apprpriate framewrk include: AHHA define stakehlders, identify gals and bjectives f the framewrk and then develp a cnsulting brief; NEHTA r DHA prcure apprpriate cnsulting services t develp the framewrk; Gvernment determinatin f the ptimal apprach t framewrk implementatin (chice between legislatin, regulatin, Cde f Practice etc); and Framewrk implementatin by mid Outcmes With successful design prcurement and implementatin f a Natinal PHR Management, Access and Cntrl Framewrk the fllwing utcmes will be achieved: Develpment f public cnfidence that persnal health infrmatin can be safely stred and accessed as needed t imprve care; PHR prviders wuld have clear guidance as t their respnsibilities and cnsumer expectatins; and PHR adptin and use, with assciated benefits, wuld be accelerated. 9.4 Cst This is an inexpensive prpsal which will yield substantial beneficial utcmes. The maximum cst wuld be $1 millin fr a natinal framewrk cnsultancy and there wuld be sme internal gvernmental implementatin csts depending n the final apprach adpted. 9.5 Cnsideratins The fllwing are seen as cnsideratins fr and against the recmmendatin: Prs This is a small practive initiative with small csts that can make a majr cntributin t imprving the way cnsumers manage their persnal health infrmatin Cns Nne are apparent. AHHA Natinal Plicy Rundtable Infrmatin Management 29

30 10. IM-7 Electrnic Medicatin Management Establish a fund t prmte the uptake f electrnic medicatin management in the acute care sectr NOTE: This recmmendatin is a reiteratin f previus AHHA prpsals cntained in its federal budget submissin fr Plicy basis ('the need') The Australian health care system faces many challenges ver the cming decades. A shrtfall in trained staff, increased demands n service, fragmented cmmunicatin, and an aging ppulatin are all factrs that lead t a widening disparity between quality and care. Crdinated e-health slutins can prvide the tls necessary t instigate significant changes t health with the greatest return n investment. In particular an early fcus n electrnic medicatin management will address the rising csts f medicatin, prevent adverse drug events and enhance patient utcmes: Adverse drug events in Australian Public Hspitals cst apprximately $420 millin in additinal bed days in ; The estimated cst fr residential aged care hspital admissins natinally fr the year 1 July 2003 t 30 June 2004 was $714 millin 14 ; The Beach Study fund ne in ten patients presenting t a GP had an adverse drug event, and the largest subset was fr the 65+ age grup (30.7%) 15 ; It is estimated that acrss Australia 140,000 hspital admissins per year are assciated with prblems with the use f medicines 16 ; and 78% f GPs were nt directly infrmed that their patient had been admitted t hspital and 73% f GPs did nt directly receive discharge summary infrmatin 17. After initial implementatin csts, the intrductin f medicatin management in public hspitals wuld have a dramatic effect n raising the level f safety and quality in ur hspitals and health system and act as a saving measure by reducing expenditure arising frm medial errr and misadventure. The gains fr the cmmunity frm adpting these strategies will include: Safer hspital care; 13 AIHW, Australian Hspitals Reprt Special ADE Query, Jan Australian Divisins f General Practice Submissin t the Calitin f Australian Gvernments Sep 2005 Revised Sep Beach Study ADEs in general practice patients in Australia.Graeme C Miller, Helena C Britt and Lisa Valenti MJA 2006; 184 (7): Australian Cuncil fr Safety and Quality in Health Care. Secnd Natinal Reprt n Patient Safety: Imprving Medicatin Safety. Canberra: Cmmnwealth Department f Health; A quality use f medicines prgram fr cntinuity f care in therapeutics frm hspital t cmmunity. MJA 2002;177: Mant A et al AHHA Natinal Plicy Rundtable Infrmatin Management 30