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2 Fr cncerned citizens and influential thinkers and ders, the McMaster Health Frum strives t be a leading hub fr imprving health utcmes thrugh cllective prblem slving. Operating at reginal/prvincial levels and at natinal levels, the Frum harnesses infrmatin, cnvenes stakehlders and prepares actin-riented leaders t meet pressing health issues creatively. The Frum acts as an agent f change by empwering stakehlders t set agendas, take well-cnsidered actins and cmmunicate the ratinale fr actins effectively. A citizen panel is an innvative way t seek public input n high-pririty issues. Each panel brings tgether citizens frm all walks f life. Panel members share their ideas and experiences n an issue, and learn frm research evidence and frm the views f thers. The discussins f a citizen panel can reveal new understandings abut an issue and spark insights abut hw it shuld be addressed. This brief was prduced by the McMaster Health Frum t serve as the basis fr discussins by a series f citizen panels abut imprving the delivery f cmplex cancer surgeries in Canada. This brief includes infrmatin n this tpic, including what is knwn abut: the underlying prblem; three pssible ptins t address the prblem; and ptential barriers and facilitatrs t implementing these ptins. This brief des nt cntain recmmendatins, which wuld have required the authrs t make judgments based n their persnal values and preferences.

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4 Imprving the delivery f cmplex cancer surgeries is challenging because: cancer represents a significant burden n individuals, the health system and sciety; patients in need f cmplex cancer surgeries and their families face a difficult jurney; and the health system is nt currently designed t prvide ptimal care fr such patients. A range f interventins were fund t be beneficial, whether r nt they were driven lcally, such as: audit and feedback, clinical decisin supprt systems, cntinuing medical educatin, and enhanced recvery prgrams. A range f prvincially-driven quality-imprvement strategies may be effective, including: practice guidelines; interventins targeting prblem-slving and cmmunicatin skills f cancer caregivers; and publicly reprting abut quality indicatrs and ther perfrmance measures. The research evidence regarding the effectiveness f pay-fr-perfrmance as a qualityimprvement strategy is nt cnvincing. In additin, pay-fr-perfrmance and public reprting may have unintended cnsequences t cnsider. There is sme evidence that reginal cllabratin is a prmising tl fr quality imprvement in surgery. There is a psitive assciatin between hspital r surgen vlume and pst-perative utcmes fr varius types f cancer. Barriers t implementing these ptins might include healthcare prviders and managers nt buying int quality-imprvement initiatives withut tangible supprts, incentives r directives, r plicymakers nt being able t make the lng-term cmmitments needed t encurage the necessary infrastructure investments. Facilitatrs t implementing these ptins might include healthcare prviders and managers being increasingly used t prvince-wide quality-imprvement initiatives, as well as recent effrts in sme prvinces t reginalize sme surgical prcedures and ther types f care. 1

5 Cancer is the leading cause f mrtality in Canada. The number f new cases f cancer is expected t increase due, in large part, t ppulatin grwth and aging. It is estimated that 20 Canadians are diagnsed with cancer every hur, and eight f them will die frm it.(6) While preventin and screening may be the mst prmising way t reduce the burden f cancer, in many patients cancer is detected at a later stage and may require cmplex surgery.(5) 2

6 Refers t a prcedure (r peratin) t remve r repair tissue, an rgan r a part f the bdy. In cancer, surgeries are used t remve tumurs r cancerus cells, r t prvide relief frm prblems such as pain, bleeding r infectin. Refers t cancer surgeries that are assciated with a high risk f cmplicatins during and after the surgeries; wide variatins in pst-surgical and lng-term survival depending n where and by whm the surgeries are perfrmed; and the need fr significant healthcare resurces befre, during and after the surgeries. Refers t the number f surgical prcedures perfrmed n unique patients by a hspital r surgen in a year. There are mre than 200 types f cancer. Certain types f cancer may necessitate surgeries that are particularly cmplex, fr example: esphagus cancer (a cancer that frms in tissues lining the muscular tube thrugh which fd passes frm the thrat t the stmach); hepat-biliary cancer (a cancer that frms in tissues f the liver, bile ducts, and/r gallbladder); lung cancer (a cancer that frms in tissues f the lungs); varian cancer (a cancer that frms in tissues f the varies and fallpian tubes); and pancreatic cancer (a cancer that frms in tissues f the pancreas). These cancer surgeries are cnsidered t be cmplex because they are assciated with: 1) a high risk f cmplicatins during and after the surgeries; 2) wide variatins in pst-surgical and lng-term survival depending n where and by whm the surgeries are perfrmed; and 3) the need fr significant healthcare resurces befre, during and after the surgeries (e.g., multiple diagnstic examinatins, lng hspitalizatins, extended fllw-up care, rehabilitatin care, supprtive care, and hme care).(5) These features suggest the need t find ways t imprve patients and families experiences with this type f care and the way this care is rganized.(2) This brief was prepared t supprt the discussins f three citizen panels abut imprving the delivery f cmplex cancer surgeries in Canada. The input frm the citizen panels will be widely shared in rder t infrm the effrts f plicymakers, managers and prfessinal leaders wh make decisins abut ur health systems. In the fllwing sectins f the brief, we explre why it is challenging t imprve the delivery f cmplex cancer surgeries. We then explre three ptins (amng many) that culd be used t imprve the delivery f these cancer surgeries. We cnclude with a discussin abut the ptential barriers and facilitatrs fr mving frward. 3

7 In this sectin, we highlight three sets f factrs that cntribute t the prblem and that require careful cnsideratin: 1. cancer represents a significant burden n individuals, the health system and sciety; 2. patients in need f cmplex cancer surgeries and their families face a difficult jurney; and 3. the health system is nt currently designed t prvide ptimal care fr such patients. 4

8 These factrs are described in mre detail belw. Refers t mre than 200 diseases in which abnrmal cells grw withut cntrl. Cancer cells can invade and destry healthy tissues. Mst cancers can als spread t ther parts f the bdy thrugh the bld r lymphatic system. (1) The main types f cancer are carcinma (i.e., cancer starting in the skin r rgan lining), sarcma (i.e., cancer that develps frm bnes r muscles), leukemia (cancer f the bdy s bld-frming tissues) and lymphma (cancer f the lymphatic system).(1) Refers t the percentage f peple wh die frm a particular cause. Refers t the percentage f peple wh are alive fr a given perid f time (in this case, after a cancer diagnsis). Cancer is the leading cause f premature death in Canada, and is the furth leading cause f hspital admissins. It is estimated that a ttal f 187,600 Canadians were diagnsed with cancer in 2013, including 25,000 with lung cancer, 4,700 with pancreatic cancer, 2,600 with varian cancer, 2,100 with hepat-biliary cancer, and 2,000 with esphagus cancer.(8) With ppulatin grwth and aging, the number f new cases f cancer in Canada is expected t increase. Since surgery is the primary treatment ptin fr certain high-risk cancers, the csts assciated with cancer surgeries are expected t rise ver time. An Ontari study examined the pst-diagnsis cst f treating patients wh had ne f 21 types f cancer and wh survived beynd ne year. The study revealed that the highest average cst per patient treated was fr esphagus cancer ($50,620). The average cst per individual treated fr the fur ther types f cancers examined in this brief were als amngst the highest: $41,846 fr pancreatic cancer; $32,717 fr liver cancer; $29,878 fr lung cancer; and $29,640 fr varian cancer. These csts included expenditures assciated with inpatient hspital admissins, physician services, chemtherapy, raditherapy, utpatient drugs, same-day surgery, diagnstic tests, lng-term care, cntinuing care, and hme care.(9) Patients diagnsed with these cancers face a difficult jurney frm the mment they first experience cancer symptms. Fr individuals diagnsed at an early stage with any f the five types f cancer examined in this brief, majr surgery has the greatest chance t prvide a cure, althugh cure rates are 5

9 generally lw. Early n, patients and families will have t make cmplex and ptentially life-changing decisins (e.g., underging surgery r nt, underging surgery at a lcal lwvlume hspital r travelling t a high-vlume hspital with the hpe f better utcmes). Hwever, infrmatin t guide such decisins is ften nt readily available (e.g., the number f surgical prcedures perfrmed by surgens/hspitals and pst-perative surgical mrtality data). The lng-term utlk fr thse diagnsed with any f these five types f cancer is generally quite intimidating, since a significant number f patients will die despite curativeintent surgery. Surgeries fr these cancers are amng the mst demanding undertaken by surgens. Other healthcare prviders face significant challenges in caring fr these patients t, as serius cmplicatins ften ccur during and after the surgeries.(10) 6

10 We describe belw the jurney f a cancer patient after being diagnsed with esphagus cancer, and hw this jurney varies based n her prvince f residence (Ontari in Bx 1, Alberta in Bx 2, r P.E.I. in Bx 3). 7

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13 Table 1 prvides an verview f these five types f cancer as reprted in the literature. It shuld be nted that these statistics may vary depending n the types f surgical prcedures, the stage f cancer, and varius patient-related factrs such as age, the presence f ther diseases r cnditins, and the hspital envirnments where the surgeries are perfrmed (e.g., vlume, surgen specialty and patient s access t pst-perative care). 10

14 Refers t an individual wh is prviding unpaid and nging care r scial supprt t a family member, neighbur r friend wh is in need due t physical, cgnitive r mental health cnditins.(3) As we can see frm Table 1, there are wide variatins in terms f the 30-day mrtality rates and five-year survival rates after surgery fr each type f cancer. While the lng-term utlk fr these patients is generally pr, it is imprtant t stress that mrtality rates have been declining and survival rates have been imprving fr these cancers ver the years. These imprvements are pssibly due t a cmbinatin f factrs including a better selectin f patients wh culd benefit frm surgery, imprved surgical techniques, and imprved care prvided befre, during and after surgery.(5) Refers t a systematic apprach t making changes that lead t better patient utcmes (health), strnger system perfrmance (care) and enhanced prfessinal develpment. It draws n the cmbined and cntinuus effrts f all stakehlders healthcare prfessinals, patients and their families, researchers, planners and educatrs t make better and sustained imprvements. (4) Refers t the deliberate rerganizatin f cancer surgeries, s that services and structures are integrated at the reginal level, and with the intent f imprving the quality f care. The term reginalizatin is ften used interchangeably with centralizatin, cnslidatin r designatin f cancer care (e.g., a designated cancer centre).(5) Imprving the delivery f cmplex cancer surgeries in Canada is als challenging because f hw the health system is currently designed. These challenges lie in hw care is delivered, hw it is paid fr, and hw it is regulated acrss the cuntry. In terms f hw care is delivered nw, we can identify three key challenges. First, there are disparities in access t cmplex cancer surgeries acrss Canada. A reprt by the Canadian Institute fr Health Infrmatin (CIHI) examined cmplex cancer surgeries in Canada fr pancreatic and esphagus cancer.(10) The reprt revealed that, while mst Canadians culd receive surgery in their wn regin, thse residing in rural areas were mre likely than urban residents t have t travel utside f their regin t receive surgical care (74% f rural residents versus 49% f urban residents in the case f pancreatic surgery, and 76% f rural residents versus 43% f urban residents in the case f esphagus surgery). In additin, cancer patients frm Prince Edward Island, the Yukn, the Nrthwest Territries and Nunavut have t travel utside f their prvince/territry because such cmplex surgeries are nt perfrmed in lcal hspitals.(10) 11

15 The disparities in access t cmplex cancer surgeries may be partially explained by the fact that we live in a very large cuntry, and large parts f the cuntry have a very lw ppulatin density. Such disparities in access can have imprtant cnsequences. Fr example, being referred utside f a regin t btain surgical care can ptentially delay treatment (e.g., different administrative rules in referral sites) and, if there are such delays, it can increase the likelihd f patients presenting with advanced cancer. In additin, sme cancer patients may chse t stay at hme and receive care lcally if they knw that the surgery will require them t travel away frm hme, which mean that they may nt have access t the same treatment ptins with the same ptential fr curing their cancer. Alternatively, sme patients may prefer t travel in the hpe that the surgical care they will receive culd lead t better utcmes. Nevertheless, having t travel utside a regin t btain surgical care can increase the financial and emtinal burden f patients and their infrmal/family caregivers (e.g., increased csts fr travel and accmmdatin, increased islatin, having t travel t a big city ut f prvince because yu can t access thse services in yur wn cmmunity, and cultural and linguistic barriers). Lastly, such travel can als cmplicate the care patients receive fllwing a surgery since the specialists wh perfrmed the surgery will nt be lcated in the patient s hme regin.(11) A secnd challenge relates t the availability f expertise t cnduct these cmplex cancer surgeries. In sme prvinces, these cmplex surgeries are being delivered in any hspital setting, withut any restrictin. There have been effrts t reginalize (r centralize) sme f these cmplex cancer surgeries int high-vlume centres (i.e., centres prviding surgical care t many patients) in a few prvinces. In sme cases, this was dne based n research evidence shwing that higher vlume, higher skilled and mre experienced hspital envirnments, in general, experience fewer cmplicatins and fewer deaths assciated with these surgeries either during r fllwing the surgeries. Hwever, the degree f reginalizatin varies acrss prvinces and types f surgeries. Fr example, the reprt by CIHI revealed that 24% f hspitals in Ontari (eight f 34 hspitals) that perfrmed pancreatic surgery were highvlume hspitals, but nly 8% f hspitals in Quebec (three f 37 hspitals) that perfrmed the same surgery were high-vlume nes (see Table 2).(10) While sme patients may underg cmplex surgeries in high-vlume hspitals where there is a cncentratin f expertise, ther patients underg the same surgeries in lw-vlume hspitals where health prfessinals and hspitals have less experience (see Table 3). Thus, sme patients are nt receiving the mst ptimal surgical care and may face higher risk f cmplicatins and mrtality depending n where the surgery is perfrmed and by which surgen. 12

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17 A third challenge abut hw care is currently being delivered is that there is a lack f supprt fr infrmal and family caregivers. Given the particularly difficult cancer jurney (as illustrated by the examples in Bxes 1-3), patients underging these surgeries will need care and supprt frm infrmal and family caregivers, such as:(12) prviding emtinal supprt; accmpanying patients t medical appintments; reprting r managing side effects; giving medicines; keeping track f medicines, test results and papers; prviding physical care (e.g., feeding, dressing and bathing); crdinating care; keeping family and friends infrmed; and making legal and financial arrangements. In 2012, it was estimated that 8.1 millin Canadians prvided care t a family member r friend with a lng-term health cnditin (mst cmmnly cancer) r aging-related needs.(13) Hwever, supprt fr infrmal and family caregivers is ften lacking and incnsistently available acrss the cuntry. This includes: practical, scial and emtinal supprt; infrmatinal supprt (e.g., advice, guidance, suggestins r useful infrmatin t help them navigate a cmplex health system); respite care services and cunselling; and financial supprt (e.g., gvernmental assistance prgrams t ffset the lss f incme, and the ut-f-pcket expenses assciated with travel and accmmdatin t btain medical care, medicatin and hmecare services). This lack f supprt can have a negative impact n the physical and mental health f infrmal and family caregivers, n their persnal and prfessinal lives, and n the quality f care that they prvide. As reprted by a frum f Canada s leading cancer, mental health and caregiver grups: Failure t recgnize, acknwledge and supprt family caregivers heightens their risk f becming cllateral casualties f the illness, cmprmises their health, reduces the efficacy f the help they can prvide t their relatives, and increases csts t the health and scial service systems. (14) 14

18 Imprving the delivery f cmplex cancer surgeries can als be challenging because f hw care is paid fr. Fr example, hw hspitals are funded can influence the delivery, the quality and vlume f care prvided.(15) Currently, the predminant funding mdel fr Canadian hspitals is a glbal budget, which is a fixed (r glbal) amunt f funding that is distributed t each hspital and that is used t pay fr all hspital-based services fr a fixed perid f time (usually ne year). In many prvinces, the glbal budget f a hspital is based n histrical spending, plitics and inflatin instead f the type f care and the vlume f care prvided. There are sme advantages t funding hspitals with a glbal budget as it prvides predictability that can facilitate planning fr hspitals, and can help gvernments cntrl healthcare spending. Hwever, it has been shwn that glbal budgets prvide little incentive fr hspitals t fcus n innvatin, increasing surgery vlumes, imprving access, crdinating care acrss facilities and sectrs, r imprving quality f care.(15) Anther dwnside is that hspitals in sme prvinces may be reluctant t treat specific patients wh require cmplex cancer surgeries, since these patients may cnsume a significant prtin f their glbal budgets, which leaves fewer funds fr ther needed services. That being said, sme prvinces are experimenting with alternative ways t fund hspitals that may influence what types f care hspitals chse t deliver and imprve the quality f care delivered. We can identify at least three key challenges related t hw care is regulated. First, clleges f physicians and surgens regulate wh can call themselves a surgen. Hwever, in general, there is minimal regulatin as t which prcedures surgens can deliver within their specialty area, r hw frequently they need t deliver these prcedures t ensure their surgical skills remain up t date. Secnd, mst Canadian hspitals are regulated in terms f what institutins can call themselves a hspital, but nt which prcedures they deliver r hw frequently they need t deliver them t ensure that quality remains high. In additin, mst hspitals are regulated by legislatin that establishes an appeal prcess fr dctrs wh feel aggrieved by decisins made by hspital bards (e.g., allcatins f perating rm time and types f prcedures delivered in a hspital). Such appeal prcesses can make it difficult t bring abut change in where different types f surgical prcedures can be delivered. Third, there is a lack f crdinated effrts amng all stakehlders t imprve cmplex cancer surgeries acrss the cuntry. Fr instance, there is n regulated set f quality indicatrs at the pan-canadian level regarding these surgeries.(10) 15

19 We prvide belw, fr illustrative purpses, a brief descriptin f hw the cancer system is rganized in Ontari (Bx 4), Alberta (Bx 5) and P.E.I. and Nva Sctia (Bx 6). 16

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22 Imprving the delivery f care can be achieved in varius ways. Fr example, we can implement quality-imprvement initiatives fcusing n measuring and imprving the prcess f care (e.g., what individual surgens r nurses d). In additin, we can imprve the structure f the health system (e.g., hw care is rganized, hw it is paid fr, and hw it is regulated).(2) 19

23 Many ptins culd be selected as a starting pint fr discussin. We have selected three (amng many) fr which we are seeking public input: 1. encurage the lcal adptin f quality-imprvement initiatives t imprve the delivery f cmplex cancer surgeries where they are nw being prvided; 2. implement prvince-wide quality-imprvement initiatives t imprve the delivery f cmplex cancer surgeries where they are nw being prvided; and 3. reginalize cmplex cancer surgeries int designated surgical centres f excellence. The three ptins d nt have t be cnsidered separately. They culd be pursued tgether r in sequence. New ptins culd als emerge during the discussins. In the fllwing sectins, we examine what is knwn abut the prs and cns fr each ptin, by summarizing the findings f systematic reviews f the research literature. A systematic review is a summary f all the studies addressing a clearly frmulated questin. The authrs use systematic and explicit methds t identify, select and evaluate the quality f the studies, and t summarize the findings frm the included studies. Nt all systematic reviews are f high quality. We present the findings frm systematic reviews alng with an appraisal f the quality f each review. Lw-quality reviews: cnclusins drawn frm these reviews can be applied with a lw degree f cnfidence. Medium-quality reviews: cnclusins drawn frm these reviews can be applied with a medium degree f cnfidence. High-quality reviews: cnclusins drawn frm these reviews can be applied with a high degree f cnfidence. 20

24 The first ptin aims t encurage healthcare prviders (e.g., surgens, nurses and thers) and managers t adpt quality-imprvement initiatives in lcal hspitals in rder t imprve the delivery f high-risk and resurce-intensive cancer surgeries. This ptin assumes that healthcare prviders and hspital managers will adpt quality-imprvement initiatives withut the need fr supprts, incentives r directives t change behaviur, and withut the need fr regulatry changes abut where (and by whm) these cancer surgeries can be prvided. In sum, this ptin prpses a lcally driven apprach t imprve the delivery f cancer surgeries. There are a large number f quality-imprvement strategies that can be driven lcally by healthcare prviders and hspital managers, fr example: 21 prmting audit and feedback (i.e., cllecting infrmatin frm healthcare prviders r frm hspitals and then prviding feedback t them in rder t help them imprve their practices); prmting the use f clinical decisin supprt systems (i.e., a frmal manual r a cmputerized system that prmpts, reminds and cautins healthcare prviders t d, r nt d, certain things under specific clinical circumstances); prmting cntinuing medical educatin (i.e., educatinal activities that help thse in the medical field maintain their cmpetencies and learn abut new and develping areas f their field); and implementing enhanced recvery prgrams (i.e., a care pathway designed t speed up recvery fr patients wh have had majr surgeries). We fund evidence frm high-quality systematic reviews abut the fur types f interventins, whether r nt they were driven lcally. Mre specifically: audit and feedback generally leads t small but ptentially imprtant imprvements in prfessinal practice, is mre effective when baseline perfrmance is lw, and when the feedback cmes frm a supervisr r clleague, is prvided mre than nce, is delivered in bth verbal and written frmats, and includes bth explicit targets and an actin plan.(16) clinical decisin supprt systems are effective fr imprving the prcess f care in varius settings, but there is a lack f evidence that they can imprve clinical, ecnmic, wrklad and efficiency utcmes.(17) cntinuing medical educatin can imprve prfessinal practice and healthcare utcmes fr the patients, but the effect is mst likely t be small and similar t ther types f

25 interventins like audit and feedback, and educatinal meetings alne are nt likely t be effective fr changing cmplex behaviurs.(18) enhanced recvery prgrams are effective in reducing length f hspital stay and verall cmplicatin rates acrss surgical specialties.(19) The secnd ptin aims t implement prvince-wide * quality-imprvement initiatives t imprve the delivery f cmplex cancer surgeries. Like the first ptin, this ptin is nt intended t change where and by whm these cancer surgeries are being prvided. Hwever, in cntrast t the first ptin, this ptin prpses a tp-dwn apprach t quality imprvement and assumes that healthcare prviders and hspital managers can achieve significant imprvements, but that they need apprpriate supprt, incentives and directives t d this. These prvince-wide quality-imprvement initiatives culd take different frms, fr example: develping prvincial guidelines and standards fr these cancer surgeries (e.g., regarding the specializatin f surgens prviding care t cancer patients, minimum hspital vlumes, and the use f multidisciplinary teams t crdinate care fr them); implementing pay-fr-perfrmance fr hspitals (i.e., a funding system fr hspitals where they are rewarded fr achieving imprvements n specific quality indicatrs and fr specific diseases); develping r expanding supprts fr patients and families (e.g., practical, scial, emtinal, infrmatinal and financial supprts); and establishing requirements fr reprting t the public abut quality indicatrs and ther perfrmance measures (e.g., each hspital r surgen being asked t reprt publicly the number f surgical prcedures perfrmed and their pst-perative surgical mrtality data). We fund a recent and high-quality review revealing that practice guidelines (i.e., dcuments with the aim f guiding decisins and criteria regarding diagnsis, management and treatment in specific areas f healthcare) were effective in imprving the quality f care. This review als fund that the disseminatin f practice guidelines can be effective in reducing reginal variatins in the use f surgery.(20) * Fr small prvinces, prvince-wide shuld be taken t mean acrss the small prvince r acrss bth the small prvince and a neighburing larger prvince t which referrals are frequently made. 22

26 We fund ne verview f systematic reviews examining pay-fr-perfrmance. The authrs cncluded that a pay-fr-perfrmance system culd be an effective quality-imprvement strategy, but the research evidence is nt yet cnvincing. In additin, there is sme evidence that pay-fr-perfrmance may have unintended cnsequences, such as encuraging hspitals and healthcare prviders nt t accept sicker patients because ding s culd negatively affect their verall perfrmance scre.(21) We fund a recent and medium-quality review examining psychlgical and scial interventins t imprve the quality f life f caregivers fr cancer patients. The review revealed that interventins t imprve prblem-slving and cmmunicatin skills may ease the burden assciated with patient care and imprve the caregiver s verall quality f life. Hwever, the review fund little evidence abut ther types f interventins t imprve the caregiving experience, r the differences in caregiver experiences with different types f cancer.(22) We fund three reviews, tw medium-quality and ne high-quality, revealing the fllwing benefits f making public infrmatin abut the perfrmance f hspitals and healthcare prviders: 23 quality measures are likely t imprve ver time;(23) develpment f ther quality-imprvement strategies is stimulated;(24) and there is a small but increasing impact n decisins made by patients.(25) Three systematic reviews (ne f medium-quality and tw f high-quality) fund incnsistent r limited evidence abut the effectiveness f public reprting in imprving the fllwing: patient, prfessinal and rganizatinal behaviurs;(23;26) safety;(24) patient-centred care;(24;25) access t care;(23;27) and mrtality rates.(23) An lder and lw-quality review explring the evidence abut making perfrmance data publicly available revealed that, while hspitals may be respnsive t publicly reprted infrmatin, cnsumers and healthcare prviders rarely search ut this type f infrmatin and may nt understand r trust it.(25) Lastly, a recent and medium-quality review fund that bth pay-fr-perfrmance and public reprting may widen racial disparities in healthcare (thrugh cherry-picking patients wh may help healthcare prviders and hspitals scre well, r aviding thse wh may cause them t scre prly, r wh may be racial minrities, in rder t make their statistics lk better).(27)

27 These findings suggest that we shuld be mindful abut the ptential implicatins f such quality-imprvement initiatives and the pssible risk f widening disparities fr patients with cmplex healthcare needs. The third ptin aims t reginalize cmplex cancer surgeries int designated surgical centres f excellence. This ptin includes effrts t change the structure f the health system and t set prvince-wide standards t supprt the reginalizatin f cmplex cancer surgeries. This ptin assumes that changes t wh perfrms the surgeries and where they are perfrmed will be needed t imprve the delivery f care. This ptin prpses a tp-dwn, prvince-wide apprach t design and implement changes t wh des what and where acrss the prvince. As with ptin 2, this ptin can include develping r expanding supprts fr patients and families. We fund nly tw relevant systematic reviews examining specifically the reginalizatin f cancer surgeries. The first ne is a recent and high-quality systematic review examining the centralizatin f services fr gyneclgical cancer. The review fund that centralizatin can prlng the lives f wmen with gyneclgical cancer, and in particular varian cancer.(28) The secnd is an lder and medium-quality review examining the effectiveness f reginal cllabratins as a quality-imprvement strategy in surgery.(29) The review fund that reginal cllabratins can imprve prcesses f care and clinical utcmes (e.g., reducing mrtality rates, lwer duratin f pstperative intubatins, and fewer surgical-site infectins). The review revealed that mtivatins fr initiating these reginal cllabratins were ften in respnse t external demands fr perfrmance data. The review als identified success factrs fr reginal cllabratins, such as: the establishment f trust amng health prfessinals and health institutins; the availability f accurate, cmplete, relevant data; clinical leadership; institutinal cmmitment; and system supprts fr quality management (e.g., infrastructure and prcesses). There is als a large bdy f research evidence shwing a psitive assciatin between hspital r surgen vlume and pst-perative utcmes fr varius types f cancer.(30) This research evidence has prmpted varius researchers and plicymakers t push fr the reginalizatin f 24

28 cmplex cancer surgeries int centres f excellence. (5) They argued that reginalizatin culd achieve the fllwing benefits:(5) imprvements in shrt-term and lng-term survival; lwer mrtality rates in hspital and at 30 and 90 days after discharge frm hspital; better access t specialist surgens; better access t diagnstic techniques; availability f multidisciplinary staff fr periperative and pst-perative care; efficient sharing f standards; better links between primary care and cmmunity rganizatins; cllecting reliable perfrmance data; and greater supprt fr research and innvatin (e.g., may be easier t cnduct clinical trials). Hwever, it is imprtant t nte that the reginalizatin f cmplex cancer surgeries int highvlume hspitals may nt be an autmatic win. Fr example, a study examining the reginalizatin f pancreatic cancer surgeries revealed that reginalizatin was assciated with a lwer mrtality rate during and after surgery in Ontari, but nt in Quebec.(31) In additin, the idea f reginalizing cmplex cancer surgeries is nt withut criticism. Reginalizatin can have unintended cnsequences fr patients, caregivers, healthcare prviders and the health system mre bradly. Fr example, reginalizatin means that cmplex cancer surgeries will be mved t high-vlume hspitals in urban centres. Thus, rural and remte patients will increasingly face access barriers (e.g., increased travel time and assciated incnvenience). This culd als increase their likelihd f patients presenting with advanced cancer due t the delays f transferring their cases frm a lcal hspital t a high-vlume hspital. It culd create challenges in terms f cntinuity f care when they g back hme after their surgery. Reginalizatin culd als result in smaller and lcal hspitals lsing expertise t high-vlume hspitals (r make it mre difficult fr them t recruit and retain surgens and physicians). It may als threaten their financial stability by transferring sme surgical prcedures t high-vlume hspitals. 25

29 In the fllwing table we summarize what we knw abut each f the three ptins. Audit and feedback (i.e., cllecting data abut perfrmance and feeding it back t healthcare prviders) - Generally leads t small but ptentially imprtant imprvements in prfessinal practice - Effectiveness depends n the initial level f perfrmance and hw the feedback is prvided Clinical decisin supprt systems (i.e., cmputer sftware that helps dctrs make better decisins): - Effective at imprving the prcess f care in varius settings - Lack f evidence that they can imprve clinical, ecnmic, wrklad and efficiency utcmes Cntinuing medical educatin - Effective at imprving prfessinal practice and patient utcmes - Effect is mst likely t be small and similar t ther types f interventins like audit and feedback - Educatinal meetings alne are nt likely t be effective fr changing cmplex behaviurs Enhanced recvery prgrams - Effective in reducing length f hspital stay and verall cmplicatin rates acrss surgical specialties Ptentially effective prvincially-driven quality-imprvement strategies: - practice guidelines (may reduce reginal variatin in the use f surgery);(20) - interventins targeting prblem-slving and cmmunicatin skills f cancer caregivers;(22) and - publicly reprting abut quality indicatrs and ther perfrmance measures.(23-25) The research evidence regarding the effectiveness f pay-fr-perfrmance as a quality-imprvement strategy is nt cnvincing.(21) Pay-fr-perfrmance and public reprting may widen racial disparities in healthcare (thrugh cherrypicking patients wh may help physicians and hspitals scre well, r aviding thse wh may cause them t scre prly).(27) While hspitals may be respnsive t publicly reprted infrmatin, patients and healthcare prviders rarely search ut this type f infrmatin and d nt understand r trust it.(25) 26

30 Centralizatin can prlng the lives f wmen with gyneclgical cancer, and in particular varian cancer.(28) Reginal cllabratin is a prmising tl fr quality imprvement in surgery.(29) There is a psitive assciatin between hspital r surgen vlume and pst-perative utcmes fr varius types f cancer.(30) Reginalizatin culd have the fllwing benefits:(5) - imprvements in shrt-term and lng-term survival; - lwer mrtality rates in-hspital and at 30 and 90 days; - better access t specialist surgens; - better access t diagnstic techniques; - availability f multidisciplinary staffs fr periperative and pst-perative care; - efficient sharing f standards; - better links between primary care and cmmunity rganizatins; - capture f reliable perfrmance data; and - supprt fr research and innvatin. Reginalizatin culd have the fllwing unintended cnsequences:(5) - increase patients travel distance and assciated incnvenience; - likelihd f presenting with advanced cancer; - prblems in cntinuity f care after surgeries; - lss f lcal services; - lss f expertise in lcal hspitals; and - lss f revenues fr lcal hspitals. 27

31 It is imprtant t cnsider what barriers we may face if we implement the prpsed ptins. These barriers may affect different grups (e.g., patients, citizens, healthcare prviders), different healthcare rganizatins r the health system as a whle. While sme barriers culd be vercme, thers culd be s substantial that they frce us t re-evaluate whether we shuld pursue that ptin. The implementatin f each f the three ptins culd als be influenced by the ability t take advantage f ptential windws f pprtunity. A windw f pprtunity culd be a recent event that was highly publicized in the media, a crisis, a change in public pinin, r an upcming electin. A windw f pprtunity can facilitate the implementatin f an ptin. A list f ptential barriers and windws f pprtunity fr implementing the three ptins is prvided belw. This table is prvided t spur reflectin abut sme f the cnsideratins that may influence chices abut an ptimal way frward. We have identified the barriers and windws f pprtunity frm a range f surces (nt just the research literature) and we have nt rank rdered them in any way. Healthcare prviders and managers may nt buy int quality-imprvement initiatives withut tangible supprts, incentives r directives. Surgens wrking alne in small- r medium-size hspitals may be reluctant t engage in such quality-imprvement initiatives by themselves. Data and data management expertise may nt be present at the lcal level. Educatinal/training pprtunities may be lacking t supprt lcal quality-imprvement initiatives. The difficult fiscal situatin (i.e., large deficit and debt and limited ecnmic grwth) can be cnducive t embracing new ways f ding things. The sustained fcus n wait-times management and (mre recently) n quality imprvement can be cnducive t embracing new ways f ding things. 28

32 Healthcare prviders and managers may nt buy int tp-dwn quality-imprvement initiatives withut tangible incentives r directives, especially if they are nt adapted t lcal needs. It may be challenging t develp and implement quality standards that wuld be relevant acrss all regins. Healthcare prviders and managers may nt be receptive if they have nt been actively invlved in develping the prvince-wide guidelines and standards. Healthcare prviders may perceive such prvincewide guidelines and standards as a threat t their prfessinal autnmy. There is a sense f territriality (i.e., the need t prtect smene s turf) amng hspitals and healthcare prviders that can influence whether and hw services are refrmed/prvided. The difficult fiscal situatin (i.e., large deficit and debt and limited ecnmic grwth) can be cnducive t embracing new ways f ding things. The sustained fcus n wait-times management and (mre recently) n quality imprvement can be cnducive t embracing new ways f ding things. Sme healthcare prviders and managers are increasingly used t prvince-wide quality imprvement initiatives (e.g., the quality framewrk by Cancer Care Ontari). Varius prvincial and natinal rganizatins are calling fr mre rigrus standards in surgery residency prgrams (e.g., minimum prcedure vlumes and stricter requirements fr credentials). The American Cllege f Surgens Natinal Surgical Quality Imprvement Prgram is being implemented in varius sites acrss Canada t evaluate patient utcmes and quality indicatrs, make cmparisns acrss sites, and set targets fr imprvement. Citizens/patients may resist the lss f skills and services in their lcal hspitals. Hspitals and reginal health authrities may resist a tp-dwn apprach t change structures. There is a sense f territriality (i.e., the need t prtect smene s turf) amng hspitals and healthcare prviders that can influence whether and hw services are refrmed/prvided. Plicymakers may nt be able t make the type f lng-term cmmitments needed t encurage the necessary infrastructure investments. The sustained fcus n wait-times management and (mre recently) n quality imprvement can be cnducive t embracing new ways f ding things. Sme prvinces have already reginalized sme surgical prcedures and ther types f care (e.g., cancer centres prviding chemtherapy and radiatin therapy, centres prviding cardiac surgeries). 29

33 This brief was prepared t stimulate discussin during three citizen panels. The views, experiences and knwledge f cancer patients and infrmal/family caregivers can make a significant cntributin t finding viable, patient-centred slutins t the prblem. Mre specifically, the panels will prvide an pprtunity t explre the questins utlined in Bx 7. Althugh we will be lking fr cmmn grund during these discussins, the gal f the panels is nt t reach cnsensus, but t gather a range f perspectives n this tpic. 30

34 Françis-Pierre Gauvin, PhD, Lead, Evidence Synthesis and Francphne Outreach, McMaster Health Frum. Julia Abelsn, PhD, Faculty, McMaster Health Frum, and Prfessr, McMaster University Jhn N. Lavis, MD PhD, Directr, McMaster Health Frum, and Prfessr, McMaster University The citizen brief and the citizen panel it was prepared t infrm were funded by the Canadian Partnership Against Cancer. The McMaster Health Frum receives bth financial and in-kind supprt frm McMaster University. The views expressed in the citizen brief are the views f the authrs and shuld nt be taken t represent the views f the Canadian Partnership Against Cancer r McMaster University. The authrs declare that they have n prfessinal r cmmercial interests relevant t the citizen brief. The funder played n rle in the identificatin, selectin, assessment, synthesis r presentatin f the research evidence prfiled in the citizen brief. One merit reviewer did have a cnnectin t the funder, hwever, Frum staff had cmplete discretin in whether and hw t act n the review. The citizen brief was reviewed by a small number f citizens, ther stakehlders, plicymakers and researchers in rder t ensure its relevance and rigur. The authrs wish t thank the entire McMaster Health Frum team fr supprt with prject crdinatin, as well as fr the prductin f this citizen brief. We are grateful t Steering Cmmittee members and merit reviewers fr prviding feedback n previus drafts f this brief. We are especially grateful t Christian Finley, Laura Schneider and Saad Shakeel fr their input at key junctures during the preparatin f the brief, and t Gerge Brwman, Sandra Christie, Christine Cuture, Jane Payne, Mark Simunvic and Terrence Sullivan fr their insightful cmments and suggestins. We als wish t thank Kaelan Mat and Rami Abu-Zeidan fr cnducting the key infrmant interviews that infrmed the preparatin f this citizen brief. The views expressed in this brief shuld nt be taken t represent the views f these individuals. Gauvin FP, Abelsn J, Lavis JN. Citizen Brief: Imprving the Delivery f Cmplex Cancer Surgeries in Canada. Hamiltn, Canada: McMaster Health Frum, 20 September (Print) (Online) 31

35 1. Canadian Cancer Sciety. Glssary. Canadian Cancer Sciety 2014; Available frm: 2. Cancer Care Ontari. Cancer System Overview. Cancer Care Ontari 2014; Available frm: 3. Canadian Hspice Palliative Care Assciatin. Fact Sheet: Hspice Palliative Care in Canada. Canadian Hspice Palliative Care Assciatin 2012; Available frm: 4. Health Quality Ontari. Quality Imprvement. Health Quality Ontari 2014; Available frm: 5. Finley C, Akhtar-Danesh N, Schneider L, Shakeel S, Abelsn J, Lavis J et al. A Discussin Paper n Apprach t High-risk, Resurce-intensive Cancer Surgery in Canada. Hamiltn, Canada: McMaster University and Canadian Partnership Against Cancer; Public Health Agency f Canada. Cancer - Abut Us. Public Health Agency f Canada 2014; Available frm: 7. Cancer Care Ontari. Ontari Cancer Plan Trnt, Canada: Cancer Care Ontari; Canadian Cancer Sciety's Advisry Cmmittee n Cancer Statistics. Canadian Cancer Statistics 2013: Special Tpic - Liver. Trnt, Canada: Canadian Cancer Sciety; de Oliveira C, Bremner KE, Pataky R, Gunraj N, Chan K, Peacck S et al. Understanding the csts f cancer care befre and after diagnsis fr the 21 mst cmmn cancers in Ontari: A ppulatin-based descriptive study. Canadian Medical Assciatin Open Access Jurnal 2013;1(1):E1-E Canadian Institute fr Health Infrmatin. Surgery fr Pancreatic and Esphageal Cancer in Canada: Hspital Experience and Care Centralizatin. Ottawa, Canada: Canadian Institute fr Health Infrmatin; Canadian Partnership Against Cancer. Examining Disparities in Cancer Cntrl: A System Perfrmance Special Fcus Reprt. Trnt, Canada: Canadian Partnership Against Cancer; Canadian Cancer Sciety. If Yu're a Caregiver. Canadian Cancer Sciety 2014; 13. Statistics Canada. Prtrait f Caregivers, Statistics Canada 2013; Available frm: Canadian Cancer Actin Netwrk. Canada, a Caring Sciety: Actin Table n Family Caregivers - Infrmed dialgue, leading t cncrete actin fr all Canadians. Trnt, Canada: Canadian Cancer Actin Netwrk; Canadian Health Services Research Fundatin. Evidence-Infrmed Optins fr Hspital Funding: Are Hspital Funding Mechanisms in Canada Designed t Prvide Efficient Care? Ottawa, Canada: Canadian Health Services Research Fundatin; Ivers N, Jamtvedt G, Flttrp S, Yung JM, Odgaard-Jensen J, French SD et al. Audit and feedback: Effects n prfessinal practice and healthcare utcmes. Cchrane Database f Systematic Reviews 2012;6:CD Bright TJ, Wng A, Dhurjati R, Bristw E, Bastian L, Ceytaux RR et al. Effect f clinical decisin-supprt systems: A systematic review. Annals f Internal Medicine 2012;157(1): Frsetlund L, Bjrndal A, Rashidian A, Jamtvedt G, O'Brien MA, Wlf F et al. Cntinuing educatin meetings and wrkshps: Effects n prfessinal practice and health care utcmes. Cchrane Database f Systematic Reviews 2009;(2):CD Nichlsn A, Lwe MC, Parker J, Lewis SR, Aldersn P, Smith AF. Systematic review and meta-analysis f enhanced recvery prgrammes in surgical patients. British Jurnal f Surgery 2014;101(3):

36 20. Reames BN, Shubeck SP, Birkmeyer JD. Strategies fr reducing reginal variatin in the use f surgery: A systematic review. Annals f Surgery 2014;259(4): Eijkenaar F, Emmert M, Scheppach M, Schffski O. Effects f pay fr perfrmance in health care: A systematic review f systematic reviews. Health Plicy 2013;110(2-3): Waldrn EA, Janke EA, Bechtel CF, Ramirez M, Chen A. A systematic review f psychscial interventins t imprve cancer caregiver quality f life. Psych-Onclgy 2013;22(6): Ttten AM, Wagner J, Tiwari A, O'Haire C, Griffin J, Walker M. Clsing the quality gap: Revisiting the state f the science (vl. 5: public reprting as a quality imprvement strategy). Evidence Reprt/Technlgy Assessment 2012;(208.5): Fung CH, Lim YW, Mattke S, Damberg C, Shekelle PG. Systematic review: The evidence that publishing patient care perfrmance data imprves quality f care. Annals f Internal Medicine 2008;148(2): Marshall MN, Shekelle PG, Leatherman S, Brk RH. The public release f perfrmance data: What d we expect t gain? A review f the evidence. Jurnal f the American Medical Assciatin 2000;283(14): Ketelaar NA, Faber MJ, Flttrp S, Rygh LH, Deane KH, Eccles MP. Public release f perfrmance data in changing the behaviur f healthcare cnsumers, prfessinals r rganisatins. Cchrane Database f Systematic Reviews 2011;(11):CD Chien AT, Chin MH, Davis AM, Casalin LP. Pay fr perfrmance, public reprting, and racial disparities in health care: Hw are prgrams being designed? Medical Care Research and Review 2007;64(5 Suppl):283S-304S. 28. W YL, Kyrgiu M, Bryant A, Everett T, Dickinsn HO. Centralisatin f services fr gynaeclgical cancer. Cchrane Database f Systematic Reviews 2012;3:CD Fung-Kee-Fung M, Watters J, Crssley C, Gubanva E, Abdulla A, Stern H et al. Reginal cllabratins as a tl fr quality imprvements in surgery: A systematic review f the literature. Annals f Surgery 2009;249(4): Reames BN, Ghaferi AA, Birkmeyer JD, Dimick JB. Hspital vlume and perative mrtality in the mdern era. Annals f Surgery Simunvic M, Urbach D, Majr D, Sutradhar R, Baxter N, T T et al. Assessing the vlume-utcme hypthesis and regin-level quality imprvement interventins: Pancreas cancer surgery in tw Canadian Prvinces. Annals f Surgical Onclgy 2010;17(10):

37 >> Cntact us 1280 Main St. West, MML-417 McMaster University Hamiltn, ON Canada L8S 4L6 Tel: x Fax: mhf@mcmaster.ca >> Fllw us mcmasterhealthfrum.rg healthsystemsevidence.rg tinyurl.cm/mhf-itunesu tinyurl.cm/mhf-yutube tinyurl.cm/mhf-facebk tinyurl.cm/mhf-twitter EVIDENCE >> INSIGHT >> ACTION