Natinal Digital Health Strategy Cnsultatin Submissin frm the Clinical Onclgy Sciety f Australia and Cancer Cuncil Australia January 2017 The Clinical Onclgy Sciety f Australia (COSA) is the peak natinal bdy representing health prfessinals frm all disciplines whse wrk invlves the care f cancer patients. Cancer Cuncil Australia is Australia's peak natinal nn-gvernment cancer cntrl rganisatin and advises the Australian Gvernment and ther bdies n evidence-based practices and plicies t help prevent, detect and treat cancer and als advcates fr the rights f cancer patients fr best treatment and supprtive care. Cntact: Paul Grgan, Directr, Public Plicy and Knwledge Management, Cancer Cuncil Australia: paul.grgan@cancer.rg.au (02) 8063 4155 Hw well the current healthcare system wrks What aspects f healthcare currently wrk well frm yur perspective? Overall, the health f the Australian ppulatin cmpares well internatinally. Life expectancy is amng the highest in the wrld, with Australia ranked sixth highest in the OECD at 82.2 years. In additin, Australia s infant mrtality rate is amngst the lwest in the wrld. Imprtantly, Australia is able t achieve gd ppulatin health utcmes relatively efficiently, with health expenditure at 8.8% f GDP, which is n par with the OECD average f 8.9%. The Australian health system has been shwn t deliver better cancer utcmes than health systems in cmparable cuntries. A recent study that cmpared survival rates fr 11 cmmn cancers acrss 67 cuntries has shwn that survival rates in Australia were amngst the best in the wrld. Specifically, five-year net survival was high fr all 11 cancers, in particular cancers f the cln, rectum, breast and prstate. Australia s wrld-leading cancer survival utcmes are likely t be due t the significant investments in screening, early detectin and treatment that the Australian Gvernment has made ver many years alng with a readily accessible public health system. There is als sme evidence in cancer that clinical trials help t imprve cancer utcmes verall and Australia has a lng standing cmmitment t internatinal trials f new therapeutics. COSA & Cancer Cuncil Australia Page 1 f 8
In Australia, there are three natinal ppulatin-based screening prgrams, fr breast, cervical and bwel cancers, that help detect cancers early and, in sme cases, detect early changes that culd g n t becme cancer. The intrductin f ppulatin-based screening prgrams has resulted in significant reductins in mrtality attributed t these cancers. The increased availability and quality f diagnstic services and treatment services, including timely access t the right cmbinatin f surgery, raditherapy, and chemtherapy, have als cntributed t imprvements in cancer survival in Australia. What aspects f healthcare need imprvement? There is evidence f variability in cancer utcmes by factrs such as regin, sciecnmic status and ethnicity. The reasns fr disparities are cmplex but the gap is nt clsing fr lw sci-ecnmic status cmmunities; relative survival is imprving slwly in Indigenus Australians cmpared with nn-indigenus Australians. If a patient is unable t travel t receive treatment at a public centre, they may be frced t pay a high premium elsewhere r chse subptimal care. As a cnsequence, utcmes fr patients living in rural and remte areas f Australia are inferir t thse f their urban cunterparts. It is critical that patient access t affrdable, gegraphically accessible health services, including specialist services, is supprted. Sme f these issues are addressed by Australian Gvernment investment in rural cancer centres but sme are likely t be the result f an verlay f lw sci-ecnmic status in rural cmmunities. Ppulatin cancer registries are unable t explre unwarranted clinical variatin in utcmes until stage, treatment and recurrence infrmatin is integrated in bth clinical infrmatin systems and cancer registries. Thus a majr area fr imprvement is enabling electrnic health recrds t be integrated with natinal data cllectins. We welcme the Gvernment s current apprach t sharing MBS and PBS data t enable easier linkage f state and natinal data t help imprve understanding f utcme variatins. Plicies are needed t address increasing ut-f-pcket healthcare csts, which cmprise a significant prtin f health spending cmpared with ther OECD cuntries. Cancer patients in Australia experience significant ut-f-pcket csts fr their treatment. Fr example, in a study f cancer patients in NSW and Victrian hspitals, ne in three said the ut-f-pcket csts f their treatment impsed significant financial burden. Fr the aspects f healthcare that yu cnsider need imprvement, what d yu think are the barriers t imprving perfrmance in this area? Alternative mdels f care have been put frward t help address the gap between rural and urban cancer utcmes in Australia. One such mdel invlves the use f telehealth services such as videcnferencing (synchrnus r real time telehealth) and stre-and-frward technlgy (asynchrnus telehealth) in cancer care. Despite its ptential advantages, the uptake f telehealth services in Australia has been slw and incnsistent, which may be due t a number f factrs. COSA & Cancer Cuncil Australia Page 2 f 8
Current telehealth-related MBS item numbers nly cver real-time vide interactins, while asynchrnus stre-and-frward telehealth services such as thse used in teledermatlgy are nt cvered. Similarly, there are currently n MBS item numbers that cver patient cnsultatins with allied health prfessinals. In additin, the level f telehealth-related knwledge and skills within the health wrkfrce is limited. In services where staff turnver can be high, such as in rural and remte areas, and new staff are faced with a high initial wrklad and steep learning curve, enthusiasm fr new ways f delivering health services, such as telehealth, may be limited. Practical prblems assciated with scheduling, crdinatin, integratin between public and private health services, as well as interperability f equipment, have als been identified as barriers t the adptin f telehealth services in Australia. Patients wh travel lng distances t access essential services, have limited mbility and/r a lw sciecnmic status, experience a significant financial burden assciated with hidden csts such as parking and transprtatin and lst wages due t carer respnsibilities, +which may be reduced by the implementatin f telehealth strategies. Gvernment schemes aimed at subsidising expenses assciated with travel t and frm services d nt adequately cver the csts brne by patients, and are falling shrt f supprting affrdable access t essential cancer care. Being in cntrl f yur healthcare One f the Australian Gvernment s key aims is t empwer peple t be in cntrl f their wn care. What des being in cntrl f yur healthcare mean t yu? We understand the phrase being in cntrl f yur healthcare t encmpass a number f cmpnents, including health literacy, shared decisin-making and supprted selfmanagement. An individual s health literacy, defined as the degree t which they have the capacity t btain, prcess, and understand basic health infrmatin and services needed t make apprpriate health decisins, is an imprtant determinant f their ability t be in cntrl f their healthcare. Health utcmes tend t be prer, and hspitalisatin rates higher, in thse with lw health literacy. Shared decisin-making is a prcess in which patients and healthcare prfessinals wrk tgether in rder t make decisins abut care and treatment based n bth evidence-based best practice and the individual patient s preferences. A key part f shared decisin-making is the acknwledgement that patients and healthcare prfessinals bring different, but equally imprtant, skills and knwledge t the prcess. In the area f cancer care, shared decisin-making has been identified as an imprtant part f patient-centred care, and has been assciated with imprved patient knwledge abut treatment ptins and increased satisfactin with the verall care experience. COSA & Cancer Cuncil Australia Page 3 f 8
Self-management is the active engagement f peple suffering frm chrnic and cmplex health prblems in the management f their wn health. Self-management interventins in cancer may help patients manage the physical symptms and psychscial distress assciated with the treatment phase f the cancer-care cntinuum, while interventins during the pst-treatment phase may be fcused n issues such as stress, depressin, sleeplessness, fear, r changes in bdy image. Imprtantly, digital health initiatives such as the My Health Recrd, which enable patients t access their wn health infrmatin, have the ptential t help them better mnitr and manage their chrnic and cmplex health prblems. Digital technlgies used in health and wellbeing activities In recent times, digital technlgies have changed the way we shp, travel, bank and scialise. T what extent d yu agree with the fllwing statement: Strngly Agree Agree Indifferent Disagree Strngly Disagree Hw wuld yu like t see digital technlgies change peple s experiences f managing their health, and the way they interact with the healthcare system? The widespread adptin f bradband and wireless technlgies in the hme, tgether with the availability f a variety f prtable, smart devices, can imprve care fr patients in all phases f life, frm wellness t acute and pst-acute care. Individuals can nw actively participate in the management f their wn health, and interact with the health system in a variety f ways: Dwnladed applicatins (apps) allw patients t track and recrd varius symptms including, pain, distress and anxiety, mbility and functin. These apps can prvide reminders fr medicatin, as well as prvide a patient with general health infrmatin. These activities can be undertaken between cnsultatins t cntinuusly capture accurate infrmatin abut their health status and facilitate nging cmmunicatin between the patient and their care team. Infrmatin frm apps shuld be dwnladable nt patient electrnic health recrds which can be accessed by members f the care team. This facilitates selfmanagement by the patient and alerts the care team t changes in the patient s cnditin. The vast amunt f infrmatin prvided t patients during a cnsultatin with their healthcare prfessinal can be verwhelming, and can lead t cnfusin and an inability t accurately recall and cmprehend the infrmatin given t them. Apps such as CAN.recall functin as a cmmunicatin aid that allws patients t recrd COSA & Cancer Cuncil Australia Page 4 f 8
their cnsultatin, replay it t imprve their understanding f their specialist s advice and share it with family and friends as necessary. Thrugh the My Health Recrd, patients shuld be able t access active prescriptins and referrals, which may reduce unnecessary cnsultatins. Healthcare prfessinals What gets in the way f healthcare prfessinals being able t cnnect, cmmunicate and crdinate with the right peple? Despite the fact that telehealth technlgies have the ptential t achieve cnsiderable health system efficiencies and reduce csts, little prgress has been made twards their widespread adptin fr a number f reasns: There has been a lack f widespread supprt fr the implementatin f these technlgies in clinical practice, as this requires significant planning and investment in bth infrastructure and human resurces, including training fr the health wrkfrce in hw t effectively use these technlgies. Resistance t adpt new mdels f care, particularly in a resurce pr, busy healthcare envirnment, where there are many cmpeting pririties. A lack f understanding f the benefits t bth the health f patients and health prfessinals in their practice. Limited evidence n the clinical and cst-effectiveness f these technlgies. Until recently, the absence f a cmprehensive electrnic patient recrd cntaining a medical histry which can be used t supprt infrmed decisin making regarding a patient s care. A lack f flexible funding and reimbursement pathways t supprt the widespread adptin f new mdels f care. Reluctance by health care prfessinals t engage with new technlgies that hld patient infrmatin due t mediclegal and privacy cncerns. What d health prfessinals need t be able t effectively cnnect, cmmunicate and crdinate with the right peple? In rder fr new mdels f care, such as telehealth, t make the transitin frm pilt prjects and trials int mainstream healthcare delivery, a significant shift is needed: Training fcused n new systems and technlgies that health prfessinals will need t understand and utilise, in rder t effectively manage the care f their patients. Integrating ptimal care pathways int prfessinal develpment prgrams ffered thrugh prfessinal bdies, in rder t increase awareness, understanding and applicatin f up-t-date, evidence-based best practice which can be implemented within the lcal healthcare cntext. COSA & Cancer Cuncil Australia Page 5 f 8
Endrsement and mdelling by key pinin leaders r champins within a clinical speciality. Ideally, widespread adptin by health service rganisatins, bth public and private. Rutine cllectin, analysis and cmmunicatin f utcmes data demnstrating the value f the technlgy ver time, fr patients, prviders and the healthcare system. Ensuring prcesses are in place t capture and incrprate feedback frm users regarding a wide variety f issues t infrm systems imprvement. Building relatinships with peak bdies such as the Clinical Onclgy Sciety f Australia, t mre effectively cmmunicate the benefits f integrating digital technlgy int clinical service delivery, as well as pprtunities fr training and skills develpment with their multidisciplinary cancer care membership. Organisatinal pririties and digital health What are yur rganisatin s pririties in respect t digital health r ehealth? Cntinuity f care is acknwledged as an essential characteristic f high-quality healthcare, and research suggests that cntinuity f care fr patients with chrnic cnditins prevents hspitalisatins and reduces healthcare csts; hwever, prviding care that is cherent and linked, and is the result f gd infrmatin flw, gd interpersnal skills, and gd crdinatin, is challenging. In the case f cancer, best practice care is delivered by a multidisciplinary team, which ensures that the needs f the patient, including treatment, psychscial, and supprtive care, are addressed in a timely manner. Fr peple diagnsed with cancer, survivrship care plans help ensure that the patient and all f the members f their healthcare team knw what fllw-up is needed, when it is needed, and wh they shuld see fr that care. The use f digital technlgies such as the My Health Recrd will facilitate multi-disciplinary care, enabling the sharing f data acrss different healthcare prviders and rganisatins, and may be particularly useful in areas such as cancer survivrship. It is imprtant that patient access t affrdable, gegraphically accessible health services, including specialist services, is supprted. This facilitates the utilisatin f the mst effective interventins t supprt the management f an individual patient s cnditin. In cancer, we knw that access t services affects use f services, which in turn can impact n health utcmes. This is particularly relevant in reginal and rural areas, where there is less specialisatin f medical services, which influences treatment decisins and utcmes. The adptin f telenclgy mdels f care ffer the pprtunity fr patients living utside f majr metrplitan centres t access specialist treatment and eligible clinical trials clser t hme, reducing the need fr travel and increasing treatment ptins. This type f mdel als links healthcare prfessinals t supprt and nging prfessinal develpment thrugh upskilling and mentring prgrams. COSA & Cancer Cuncil Australia Page 6 f 8
Data, technlgy, and imprved health and wellbeing Hw culd data and technlgy be better used t imprve health and wellbeing? The availability f quality data is critical t the delivery f cancer care and cancer cntrl services mre bradly. In Australia, there are gaps in cancer data, where the data is either nt available, incmplete, r nt sufficient fr natinal reprting purpses. Fr example, with advances in preventin, screening and treatment, many f thse affected by cancer are nw living lnger, either free f disease r with recurrent disease; hwever, despite this, there is little data describing the quality f life f patients after treatment, intermediate and lng-term txicities, r the impact f new treatments and technlgies. Therefre, imprvements in the cmpleteness, quality and availability f cancer data will help strengthen the evidence base n emerging cancer issues, current and planned cancer cntrl interventins, and future trends. Australia has a number f high value cancer datasets, which when linked, will enable better infrmed health plicies and service delivery and mre efficient use f health resurces; hwever, ne f the key cncerns with data linkage is the prtectin f individuals privacy. While the cnsideratin f privacy standards is very imprtant, it is als imprtant t nte that well-established linkage prtcls that are capable f preserving individual privacy already exist in Australia. It is critical that gvernment cntinues t fund initiatives such as the Ppulatin Health Research Netwrk (PHRN), which is develping and testing leadingedge technlgy t ensure the safe and secure linking f data cllectins whilst wrking t prtect peple s identity and privacy. One such example is the Secure Unified Research Envirnment (SURE) system, a remte-access data research labratry develped by the Sax Institute as part f the PHRN, that enables structured access fr researchers t secure and sensitive datasets held n separate secure servers. Pririty initiative fr My Health Recrd What shuld be the immediate pririty initiative fr the My Health Recrd t ensure it delivers real value fr clinicians and the public? Persnally cntrlled health recrds such as the My Health Recrd have many benefits, including helping cnsumers becme mre practive participants in the management f their wn health, as well as imprved cnsumer-prvider cmmunicatin, access t data in medical emergencies and chrnic disease management. In the case f cancer, best practice care is delivered by a multi-disciplinary team, which ensures that the treatment, psychscial, and supprtive care needs f the patient are addressed in a timely manner. The use f persnally cntrlled health recrds will facilitate multi-disciplinary care, enabling the sharing f data acrss different healthcare prviders and rganisatins, and may be particularly useful in areas such as cancer survivrship. There are als challenges assciated with the use f persnally cntrlled health recrds. Individuals are able t remve clinical r Medicare dcuments frm their My Health Recrd at any time, and as a result these dcuments may n lnger be accessible, even in an COSA & Cancer Cuncil Australia Page 7 f 8
emergency. If individuals remve infrmatin withut cnsulting with the relevant healthcare prfessinal(s), this raises cncerns abut the accuracy and reliability f the data cntained within the recrd. Australian Medical Assciatin (AMA) president Michael Gannn has nted that Giving patients such cntrl, as the My Health Recrd system des, is a big handicap t the clinical usefulness f shared electrnic medical recrds. Individuals shuld have the right t access their My Health Recrd, including the right t request edits r crrectins fr reasns f accuracy; hwever, serius cnsideratin needs t be given t the level f cntent cntrl patients currently have, as it is likely t have an impact n hw the recrd is viewed by healthcare prfessinals, and as a cnsequence its utility in clinical practice and its value t health and medical research. COSA & Cancer Cuncil Australia Page 8 f 8