Improving the Management of Cancer in the Workplace

Transcription

1 Wrkplace Health Engagement Perfrmance H3 Cnsulting Health Research & Strategy / Cmmunicated Imprving the Management f Cancer in the Wrkplace Discussin Paper Chris Bnnett, H3 Cnsulting and Allan Smfsky, Smfsky Strategic Planning

2 Imprving the Management f Cancer in the Wrkplace Table f Cntents Executive Summary 2 Intrductin 4 Sectin 1 The Impact f Cancer n the Wrkplace 6 Sectin 2 Current Research n Wrkplace Best Practices 14 Sectin 3 Emerging Best Practice Mdels 21 Cnslidated Emplyer Best Practices 24 Sectin 4 Guiding Principles and Recmmended Practices fr Wrkplace 25 Cancer Management Sectin 5 Cnsidering Links between Emplyer and Prvincial Cancer Resurces 28 Page Appendix 1 Appendix 2 Stakehlder Interview Summary High-level Wrkplace Cancer Mdel References 1

3 Imprving the Management f Cancer in the Wrkplace Executive Summary As the incidence f several cancer types cntinues t climb, the cst and disruptin t wrkplaces will nly increase. An aging labur frce, pr lifestyle chices, and envirnmental expsures will all cntribute t this challenge. It will surprise many t knw that ver 40% f all cancers are diagnsed in the wrking ppulatin (ages 20 t 65), including 70% f all breast cancer cases. The (really) gd news is that imprved therapies have resulted in ver 810, year cancer survivrs in Canada. But this means emplyees are nw mre likely than ever t return t wrk fllwing cancer treatment, r in many cases stay at wrk while being treated. Many thers take n a caregiver rle. Similar t mental health, a cancer diagnsis can create wrkplace challenges, including negative and unfair behaviurs amng wrkplace leaders, managers and clleagues. We want t change that. This discussin paper is intended t be a practical and authritative guide t help emplyers, unins, benefit advisrs and ther stakehlders vercme stigma and imprve hw cancer is handled. Recent literature, much f it Canadian, dcuments a significant gap between hw survivrs want and need t be managed, and their lived experiences with emplyers, managers and c-wrkers during treatment and as they return t wrk. There are five main sectins: 1. First, we review the evidence t describe hw cancer affects prductivity, its prevalence, linkage t lifestyle, and direct (drug) and indirect (absence, disability, presenteeism and wrker replacement) emplyer csts. We discuss hw cancer cnnects t crprate scial respnsibility and the impact it has n emplyed caregivers. 2. Next, we describe a number f best wrkplace practices drawn frm ur review f abut three dzen high-quality studies and reprts. Mst f these are in the References sectin. We identify many factrs assciated with successful return t wrk. 3. We have identified several web-based cancer resurces and best practice mdels in Canada, the United States and the United Kingdm. 4. We have translated the preceding three sectins int practical advice and recmmended practices fr emplyers and the wrkplace parties regarding the imprtant rle f health and disability benefits, the need t measure csts, prevalence, practices and utcmes, hw t prvide psychscial supprt, caregiver benefits, and a few fundatinal human resurce plicies and practices. 5. We briefly nte the need fr better crdinatin between prvincially-funded cancer treatments and services and thse prvided by emplyers. 2

4 Imprving the Management f Cancer in the Wrkplace The reprt als includes ntes frm interviews with six stakehlders related t their experiences at wrk, including hw they manage cancer and ther chrnic diseases and face the rising csts f drugs and disability plans. Appendix 2 prvides an initial, high-level wrkplace cancer mdel. We hpe this paper sparks discussin and results in better management f cancer and in fact all chrnic diseases in the wrkplace given generally similar links t lifestyle behaviurs and management practices. We have taken a page frm twenty years f tremendus prgress in hw mental illnesses are nw measured and managed and hpe fr similar thugh much faster prgress in cancer. Acknwledgements The authrs sincerely thank ur partners in this wrk. The Canadian Cancer Sciety cllabrated in reviewing and prviding input int the develpment f this reprt. The Sciety's missin is the eradicatin f cancer and the enhancement f quality f life f peple living with cancer. The Canadian Cancer Sciety is actively engaged in imprving drug access and cancer supprt fr patients and families in the wrkplace and ther settings. AstraZeneca Canada prvided a grant t make this reprt pssible. Abut the authrs Chris Bnnett established H3 Cnsulting in 1999, after 18 years f prgressive experience in underwriting, reinsuring, selling, and marketing emplyee benefits. He has written dzens f practical health-fcused articles and has spken at mre than 100 cnferences acrss Canada and in the US. His cnsulting and academic interests fcus n imprving health in the wrkplace and ensuring all Canadians have adequate prescriptin drug insurance. Chris has been a vlunteer directr n the Bards f three health service rganizatins. He hlds a Master's degree in Health Science frm the University f Trnt, and is a part-time PhD Candidate in the Schl f Public Health and Health Systems at the University f Waterl. His dissertatin (2017) examines hw t achieve universal drug insurance. Allan Smfsky is the Managing Directr f Smfsky Strategic Planning (SSP), a strategic planning cnsultancy that advises stakehlders acrss the spectrum f rganizatinal health n measurably imprving health, engagement and perfrmance, primarily in the wrkplace envirnment. Fluently bilingual in French and English, Allan held senir-level leadership and cnsulting psitins with glbal health / human resurces and benefits cnsulting firms, as well as wrkplace health service prviders prir t funding SSP in Allan is an active member f several health rganizatins, and is a winner f the Rgers Media (Canada) Wrking Well Wh s Wh in Wrkplace Health award (nw the Benefits Canada awards) and is a frequently invited speaker and writer n rganizatinal health, benefits and well-being issues. 3

5 Imprving the Management f Cancer in the Wrkplace Imprving the Management f Cancer in the Wrkplace Intrductin The rise in new cases f cancer will place an increasing burden n Canadian sciety There is a need t enhance capacity fr primary preventin, early detectin and treatment t further reduce verall cancer incidence and mrtality. Canadian Cancer Statistics, 2012 Cancer represents an interesting dichtmy. On the ne hand, incidence fr several cancer types cntinues t steadily escalate. Hwever, the develpment f new, mre targeted and effective cancer therapies, cupled with mre gvernment investment in cancer preventin, screening, and educatin has led t a vast increase in survivrship rates fr many types f cancer. There is a paradigm shift ccurring n hw sciety thinks abut cancer. Many peple affected by cancer, such as patients and their caregivers, nw have an increased pprtunity t fcus n living with cancer rather than aviding death. Wrkplaces and health systems and resurces must als reflect cancer as a chrnic disease. Private and prvincial health systems t ften wrk independently, resulting in unnecessary cmplexity, service duplicatin and gaps in the cntinuum f care frm preventin thrugh t palliative stages. This cntinuum is arguably a misnmer when cnsidering cancer care in Canada since it implies seamless, crdinated delivery f resurces. While this is the case t sme extent within the public health systems, there still exist significant gaps, and there is very little crdinatin with wrkplace health resurces. In the wrkplace, many emplyers supprt cancer as part f crprate scial respnsibility t the brader cmmunity thrugh financial cntributins t cancer charities, encuraging staff t participate in charity events, r thrugh health prmtin, screening and cancer supprt prgrams at wrk. Yet they ften struggle t manage the increasing number f emplyees wh suffer frm cancer wh still want (and are ften able) t wrk. Emplyers usually lack plicies and supprts that include dependents with cancer as well as caregivers, and s there are imprtant prcess, navigatin and infrmatin gaps. As a fatal and chrnic disease, cancer is different. Outcmes are ften dependent n timely, simplified and crdinated access t necessary care and supprt resurces. We believe nw is the time t mve past dialgue t develp and implement practical, actinable, utcmes-fcused slutins. In the lng run, we believe the mst efficient and cst-effective way t prevent and manage cancer is t take a brader ppulatin health apprach, whereby gvernments and wrkplace health stakehlders cllabrate and leverage all health system and wrkplace resurces surrunding all individuals affected by cancer, be they the patient, a dependent with cancer r the caregiver. Our mre immediate pprtunity is rganize and imprve wrkplace resurces t better serve survivrs and caregivers. Thrugh designing a better wrkplace delivery system, we believe pprtunities t interact with gvernment, plicy and public health system stakehlders will becme increasingly apparent. 4

6 Imprving the Management f Cancer in the Wrkplace The theme and primary fcus f ur reprt is n rganizing the system f care, initially and primarily in the wrkplace, t address the needs f the whle patient. We have cmpared tday s current state t an ideal state. The gaps are framed as pprtunities that need attentin frm stakehlders. The purpse f this discussin paper is t: 1. Identify key issues and gaps in wrkplace cancer management, with emphasis n health benefits, return t r staying at wrk, rganizatinal supprts and related plicy implicatins; 2. Set ut the business case fr emplyers and survivrs t mre actively prevent and manage cancer; 3. Dcument best and emerging practices in wrkplace cancer management, bth in Canada and elsewhere; 4. Identify ther cnsideratins t better manage cancer, ntably linking wrkplace and health systems resurces; and 5. Develp a preliminary framewrk and guiding principles fr effective wrkplace cancer management. 5

7 Imprving the Management f Cancer in the Wrkplace Sectin 1 The Impact f Cancer n the Wrkplace We smetimes grumble abut ging t wrk, but there is cnsiderable evidence that wrk can be gd fr us, even therapeutic. Wrk is part f ur identity; it is nrmal behaviur and allws us t better cntrl ur lives because it creates nt just incme and assets, but self-esteem, quality f life and scial relatinships and supprt. If yu wnder abut that sme days, cnsider what wuld happen if yu lst yur jb r yur ability t wrk. Cancer affects Prductivity It will surprise many that cancer affects a significant prprtin f wrking age Canadians: 43% f all cancers diagnsed in 2010 (73,000) ccurred in wrking age Canadians aged 20 t 64, including 70% f all breast cancer cases (Statistics Canada, special tabulatin). In additin, many in the wrkfrce are distracted r absent as they care fr children, parents, family and friends. A McGill University survey indicated 16% f Canadians had been caregivers in the past year. Of these, ne-third had t care fr ther family members at the same time, and 20% tk at least ne mnth ff wrk t care fr the patient. 1 In the US, half f 13.4 millin cancer survivrs are f wrking age. The annual prductivity lss f cancer survivrs was, n average, 65% higher fr men and 49% higher fr wmen versus thse withut a cancer diagnsis (Ekwueme et al, 2014). While high in percentage terms, in abslute (US) dllars, the annual prductivity lss was quite mderate: $1,459 fr men and $1,330 fr wmen. Amng emplyed survey participants, Ekwueme et al. reprted that 42% required changes t their wrk duties and hurs and abut ne quarter said their cancer made them less prductive at wrk. Results were reprted after adjusting fr age, sex, ethnicity, number f chrnic diseases, marital status and educatin. Cancer ften keeps peple frm wrking, at least fr a while, and mrever ften impairs their ability t be fully prductive even lng after treatments have ended. While that directly affects wrkers and their families, it als csts emplyers and sciety thrugh presenteeism, absence, disability, prductivity lsses and premature death. The burden f cancer in Canada was mst recently estimated at $5.4 billin in 2006 (PHAC, 2014), hwever this figure includes incme replacement csts nly until the time the cancer patient s vacant psitin is filled. This estimate therefre excludes mst shrt- and lng-term disability (STD, LTD) csts, as well as csts fr presenteeism and caregiving. 2 In 2005, cancers were respnsible fr the lngest duratin STD claims and were the third mst expensive type f LTD claim (Manulife, 2006) Health Care in Canada survey f 1,500 Canadian adults; estimated margin f +/- 2.5%. Available at: 2 The methdlgy f calculating indirect csts changed substantially since the previus editin f the Ecnmic Burden f Illness in Canada, 1998 (Health Canada, 2003). At that time, cancer was ranked 4 th mst cstly verall, with a ttal ecnmic burden f $14.2 billin in 1998 dllars. 6

8 Imprving the Management f Cancer in the Wrkplace Studies have estimated that abut 60% f cancer survivrs, verall, cntinue t wrk during r return t wrk after cancer treatment (Mehnert, 2011; de Ber et al., 2008). This depends in part n hw emplyers manage survivrs. The Institute fr Wrk and Health has recently updated its evaluatin f seven principles fr successful return t wrk. Sectin 2 explres the research n hw emplyers, cancer patients and survivrs and caregivers handle this prcess. Cancer is Prevalent Fr the last decade, cancer has killed mre peple each year than any ther disease. And yet, there were ver 810,000 Canadians in 2009 with a cancer diagnsis ver the ten previus years wh were still alive. Canada, like many western cuntries, faces an emerging cancer paradx. This is a set f diseases that disable and kill mre peple every year, and yet mre peple survive lnger. Cancer has becme bth chrnic and fatal. Over their lifetimes, men have a 45% chance f a cancer diagnsis and wmen have a 42% chance (Canadian Cancer Sciety, 2016). While bth incidence (new cases) and mrtality rates have been trending dwnward fr the last 25 years, a larger and lder ppulatin means the ttal number f cases will cntinue t climb (Xie, Semenciw and Mery, 2015; Canadian Cancer Sciety, 2016). Lifestyle and Cancer A review f research frm several cuntries indicates 35% t 40% f cancer diagnses and deaths are preventable thrugh lifestyle changes (Wrld Health Organizatin, 2007; Parkin, Byd and Walker, 2011; Lanting et al., 2014; Weiderpass, 2010). 3 While there is sme variatin in the percentages amng the studies, lifestyle generally means behaviural chices that include smking, pr diet, physical inactivity, excess alchl, and may include excess weight, expsure t radiatin, certain infectins, envirnmental smke and stress. Primary preventin thrugh behaviural and envirnmental interventins lifestyle is beynd a dubt the mst cst-effective alternative fr preventing a large burden f chrnic and degenerative diseases wrldwide, including cancer. (Weiderpass, p. 459) Using the Wrld Health Organizatin (WHO) and ther reputable reprts, Weiderpass (2010) reprted that 37% f cancers were attributed t eight lifestyle behaviurs in high incme natins. These are shwn in Table 1. 3 Many cancers arise frm ccupatinal expsure t txic chemicals, smke, radiatin, asbests r ther factrs. These cancers and their preventin is a critically imprtant issue but utside the scpe f this reprt. 7

9 Imprving the Management f Cancer in the Wrkplace Table 1: Cancers Linked t Behaviur Behaviur Ppulatin Attributable Fractin Smking 29% Alchl use 4% Lw fruit and vegetable intake 3% Overweight and besity 3% Physical inactivity 2% Others (N=3) 2-3% Ttal 37% Surce: Weiderpass, Ppulatin Attributable Fractin estimates the reductin in cancer if expsure t the behaviur was reduced t the lwest pssible minimum. Nte the eight behaviurs d nt add t 37% because part f the ppulatin has mre than ne risk factr. Other risk factrs have cme t light since publicatin f thse surce reprts. These include expsure t ultravilet light (including tanning beds) and secnd-hand tbacc smke. An analysis f Canadian data attributed 28% (47,000) f new cancer cases in 2013 t fur lifestyle factrs (tbacc smking, alchl use, excess weight and physical inactivity) with an estimated ecnmic impact f $9.6 billin (Kreuger et al., 2016). The study nted a tw percent reductin in lifestyle-related cancer incidence (frm 30% in 2000), which they attributed t reduced smking and higher levels f physical activity. Cancer is Expensive and Csts will Increase Cancer is increasingly relevant t drug plans, whether gvernment r private. Cnsider: Onclgy is already the largest therapeutic class by sales (IMS Health, 2015). Seventy new treatments were launched between 2011 and Current sales are set t increase by 50% between 2015 and Of almst 600 new nclgy mlecules in the pipeline, 270 are in late stage develpment (IMS Institute, 2016). Twenty-tw percent f all drugs in Phase III clinical develpment r under review by the US Fd and Drug Administratin treat cancer. This percentage ranks first and is larger than the next three therapeutic classes (cardivascular, central nervus system and dermatlgy) cmbined (PMPRB, 2015). 8

10 Imprving the Management f Cancer in the Wrkplace All this cst infrmatin can alarm payers t the pint where new cst cntrls may unduly slw r cmpletely frustrate access t medicines. Clinical and ecnmic reviews ensure value frm the payer perspective and thereby help sustain drug plans int the future. Hwever, the emtinal impact f a cancer diagnsis and, in sme cases, the impact n a patient s health, requires such reviews t ccur quickly. Drug manufacturers and payers need t cperate t ensure necessary evidence is readily available and prperly evaluated. The Canadian Cancer Sciety identified twelve Take-Hme Cancer Drugs (THCDs) apprved by Health Canada between 2000 and Nine f the 12 cst ver $20,000, and eight cst mre than $30,000. The average cst f a curse f treatment with thse drugs at that time was $65,000, abut the same as the average annual husehld incme. Surce: CCS, Cancer Drug Access fr Canadians. Emplyers need t be aware f hw nclgy drugs affect their drug plans t. Gvernment drug plans, hspitals r cancer agencies in Ontari and Atlantic Canada either d nt cver cancer drugs unless they are infused r administered intravenusly in a clinical setting, r they may d s nly fllwing a special physician request and require lder r ptentially less effective drugs t be tried first. In Ontari at least, there is n scientific ratinale fr this restrictive plicy; it is Since then, many mre new cancer and adjunctive therapy drugs have been apprved. The average THCD treatment cst has increased t $78,190, and csts can exceed $140,000 when immunnclgy prducts are used. Surce: CCS-ON, Cst f Cancer Drugs (unpublished). simply histry. Hwever, many Take-Hme Cancer Drugs are cvered with n patient cst in Western Canada r are simply made part f Quebec s universal drug plan which has an annual patient cst limit f $1,046 ( ). Ontari residents must first wait fr an adjudicatin decisin thrugh the prvince s Exceptinal Access Prgram and then if apprved, apply fr cverage thrugh the Trillium Drug plan when their ut-f-pcket csts exceed abut 4% f family incme. Cancer als creates many direct and indirect csts fr patients. 1. One survey f 216 emplyers nted that 27% terminate the patient s health and dental benefits ne year r mre after being admitted t lng term disability benefits. This varies by sectr, with the highest percentage f terminatins ccurring in: (i) transprtatin, warehusing, cmmunicatin and utilities (50%), (ii) whlesale and retail trade (37%) and (iii) Finance, Insurance, Investment and Real Estate (36%) A Canadian estimate f the wage lss frm cancer (Hpkins, Geree, Lng, 2010) indicated patient and caregiver csts are significant: Newly diagnsed cancer patients n average reduced their wrk time by 36%. Caregivers lst 23% f their paid wrk time. 4 Trnt Regin Bard f Trade: Benefits and Emplyment Practices Benchmark, 2015/

11 Imprving the Management f Cancer in the Wrkplace Annual husehld incme was reduced by 26.5% fr cancer patients versus the general ppulatin. In aggregate, new cancer diagnses generated a wage lss f $3.18 billin in A Statistics Canada (Jen, 2014) study that linked varius datasets cmpared emplyment and earnings between cancer survivrs wrking at the time f diagnsis and a matched cmparisn grup. Differences were measured in each f the three years fllwing diagnsis. The prbability f being unemplyed is 3% greater with cancer patients at ne year pst-diagnsis, and increases t almst 5% after three years. Earnings n average were reduced by 12% ne year after diagnsis, thugh the gap narrws in years tw and three. Educatinal level and survival rates by type f cancer affected the results. 4. A recent discussin paper by the Canadian Cancer Actin Netwrk and Canadian Cancer Sciety (Manitba) identified issues that describe the financial impact f cancer: There are nging barriers t maintaining r returning t wrk, including medical appintments and residual pst-treatment health effects. Gaps in gvernment safety nets, including: Emplyment Insurance (EI) sickness benefits are limited t 55% f earnings, up t $537 weekly (2016) fr up t 15 weeks. T qualify, EI requires a variable number f hurs wrked in the previus year, 420 t 700 hurs depending n regin. EI benefits will nt be available fr subsequent treatments if the cancer patient has nt wrked the required number f hurs in the previus year. The EI Cmpassinate Care benefit prvides up t 26 weeks f benefits when the death f a family member is expected within the next 26 weeks. Canada Pensin Plan disability benefit has a very stringent definitin f disability: severe and prlnged, indefinite r likely t result in death. Future return t wrk is nt pssible. This effectively renders mst cancer patients ineligible fr CPP benefits. Fr 2016, the average mnthly CPP disability benefit is $ (maximum $1,290.81). The ttal payable is based n hw much a patient cntributed during his r her wrking career. Prvincial scial assistance plans prvide a very limited incme, and typically patients must deplete almst all their cash-equivalent assets, including RRSPs, befre qualifying. Hwever, health and drug benefits are prvided. Lack f private health and disability insurance, either frm emplyment, r thrugh an assciatin r individual plicy. Emplyers understand cancer is mre than just a cst A cnnectin between emplyee health and well-being and an emplyer s Crprate Scial Respnsibility (CSR) agenda has emerged in recent years. While CSR is ften psitined as an rganizatin being externally fcused t better its cmmunity, there is a gd deal f research that 10

12 Imprving the Management f Cancer in the Wrkplace suggests CSR als benefits the rganizatin s wn emplyees. The Wrld Health Organizatin (WHO, 2010) released a reprt n healthy wrkplaces and added a new element Enterprise Cmmunity Invlvement t its definitin f a healthy wrkplace. The reprt states: Enterprises impact n the cmmunities in which they perate and are impacted by their cmmunities. Wrkers' health, fr instance, is prfundly affected by the physical and scial envirnment f the brader cmmunity. Enterprise cmmunity invlvement refers t the activities in which an enterprise might engage, r expertise and resurces it might prvide, t supprt the scial and physical wellbeing f a cmmunity in which it perates. This particularly includes factrs affecting the physical and mental health, safety and well-being f wrkers and their families. Business fr Scial Respnsibility (BSR) is a glbal nn-prfit rganizatin cmprised f mre than 250 member cmpanies and ther partners interested in building a just and sustainable wrld. BSR recmmends fur critical success factrs fr CSR (BSR, 2013), ne f which is: Reframe health and wellness as a brader stakehlder and value chain issue and ensure that the cmpany s CSR agenda reflects that shift. CSR represents a high pririty fr many rganizatins, and des nt always require a scientific r financial business case. Emplyers ften supprt health causes fr nn-financial reasns that include mrale, culture and a brader sense f respnsibility t their cmmunity. Health, and even high-cst drug and disability plans, can ccupy a far mre strategic place fr emplyers as an integral part f their CSR agenda. Replacement Csts In additin t csts fr treatment and incme replacement, emplyers will very ften need t replace an emplyee mst ften temprarily underging treatment csts fr cancer. That usually means added rganizatinal cst fr advertising, recruitment and vetting. Training and/r develpment csts fllw and fr a time, any replacement is likely t be less prductive (effective and efficient) than the nw-absent patient. If an emplyer chses nt t replace a wrker and in turn distributes added wrk t ther emplyees, then stress amng them may increase and mrale may suffer. Prductivity may be impacted as well. Beynd the cst f the wrker, the cst and pprtunity cst f management time fr line and human resurce (HR) management must als be cnsidered. The cst f turnver is ften estimated at abut 150% f salary, but it is very difficult t find hard numbers t supprt that rule f thumb. The figure depends n what csts are included (direct like a recruiter and HR time, and indirect like prductivity), the required educatin, experience and skills, as well whether the jb is entry-level, managerial r executive. The best advice is t develp yur wn 11

13 Imprving the Management f Cancer in the Wrkplace calculatr. One example by Hay Grup, a glbal human resurces cnsulting firm, prvides a range f 50% f salary fr an hurly wrker t 150% f salary fr a prfessinal r executive psitin. 5 Emplyer Best Practice - Minimize replacement csts: Ensure an emplyee diagnsed with a serius illness like cancer feels welcme in staying in their psitin r returning t wrk (RTW) after treatment. Prvide tangible supprts such as flexible time, graduated RTW plans, ergnmic adjustments, assistance with heavy wrk, and mre frequent rest. Cmmunicate with wrkplace clleagues and managers t set the stage and create reasnable expectatins. Cnsidering Caregiving The respnsibility f caregiving can be a significant distractin fr emplyees and therefre impact the quality and safety f wrk. Few studies have been published t prperly cnsider the crucial rle played by caregivers and the psitive impact they have n the patient and the health care system, but als the challenges created fr themselves and their emplyer. In her cmprehensive reprt n caregiving, Janice O Keefe nted the significant and ften unrecgnized csts brne by caregivers: Infrmal caregivers are family members, friends r neighburs, mst frequently wmen, wh prvide unpaid care t a persn wh needs supprt due t a disability, illness r ther difficulty, smetimes fr extended perids. They bear substantial csts ecnmic, scial, physical r psychlgical. Fr instance, they are likely t incur ut-f-pcket expenses and significant lifetime incme lsses, and they cmmnly experience stress, scial islatin and guilt. Such persnal csts can negatively impact the caregivers ecnmic security, health and well-being. (O Keefe, 2011, p. 1). While there is grwing recgnitin f the impact f caregiving respnsibilities n emplyees, many emplyers have nt yet addressed this explicitly in an rganizatinal plicy. Ler et al. (2012) surveyed senir human resurce representatives at 291 Canadian emplyers and fund that half f them believed that caregiving is the individual emplyee s respnsibility, and that current wrkplace practices are adequate t meet the needs f mst emplyees, including whether they are parents, spuses r clse friends and caregivers. Relatively few emplyers currently prvide infrmatin r access t specialized services beynd what might be available thrugh Emplyee Assistance Prgrams. It is interesting t nte, hwever, that 58% f emplyers believe that caregivers f senirs and chrnically ill family members wuld benefit frm imprved public plicies and wrkplace practices, which speaks t the emerging awareness f this issue. Further study is needed t create a strnger business case fr caregiving as a pririty fr emplyers. 5 A Hay Grup Reprt citing that range was issued in June 2010 (page 3). See: 12

14 Imprving the Management f Cancer in the Wrkplace Summary Cancer is nt nly a disease f ld age. Increasingly, it is nt a death sentence. Imprtantly, the cst and burden f cancer is nt brne nly by ur public health care system. Mre than mst, emplyers may knw that cancer significantly affects prductivity and peple in wrkplaces acrss Canada. It is prevalent, ften preventable and increasingly expensive fr emplyer drug and disability plans. Since s many cancers ver 40% are diagnsed in the wrking age ppulatin, emplyers and ther wrkplace health stakehlders have an imprtant stake in managing the preventin and treatment f cancer, as well as the recvery prcess. Thse csts and verall burden extend t family members and may include emplyees as caregivers. Once aware, many emplyers may struggle with determining their business and mral perspectives and ensuring they meet their legal respnsibility t accmmdate returning cancer survivrs. They may nt have apprpriate plicies and supprts in place. Sectin 2 will review best practices frm a review f published literature including several studies frm Canada. The business case fr managing this disease is cmpelling, but need nt be daunting. In fact, many f the principles fr cancer management apply equally well t many ther chrnic diseases als prevalent in the wrkplace, and cstly t emplyers and emplyees alike. 13

15 Imprving the Management f Cancer in the Wrkplace Sectin 2 Current Research n Wrkplace Best Practices Intrductin Cancer and wrk has attracted a grwing bdy f research in recent years largely as a result f imprved survival amng wrking age patients. There is ften a difficult transitin bth away frm wrk at diagnsis, and in returning t wrk fllwing successful treatment. Sme emplyees chse t cntinue t wrk during treatment fr as lng as pssible, and many are actually able t wrk thrugh their treatment withut having t take a lengthy perid f time ff. It shuld be nted, hwever, that, in rder t wrk during treatment many patients will require sme degree f accmmdatin frm their emplyer. Other challenges may cme int play fr example, balancing the emplyee s will t wrk and retain a sense f nrmalcy, with hw fatigue and psychlgical stress may impact the wrker, c-wrkers and managers. Table 2 summarizes the range f factrs assciated with return t wrk. The evidence is discussed in mre detail belw. A recmmended emplyer best practice fllws each finding. Table 2 Factrs Assciated with Return t Wrk Negative Factrs x Unsupprtive wrk envirnment that can create resentment and stigma x Lss f attachment t wrk x Inadequate drug, health, EAP and disability prgrams x Treating return t wrk as an event, rather than as a prcess Psitive Factrs Management and c-wrker training and supprt Emplyer preparedness Acknwledging physical and mental impacts Recgnizing the psychlgical and scial benefits f wrking x Certain wrker and disease characteristics such as lder age, heavy physical labur, shrt-survivr cancers, lwer educatin and incmes, etc. Surce: Pints are drawn frm the fllwing assessment f published literature. 1) Cancer and c-mrbidities 6 increase the burden f illness Accmmdatin in jb rle and wrk setting Access t health and disability benefits A large, retrspective American study (Dwling et al., 2013) using a ppulatin health survey cmpared the burden f disease fr cancer survivrs with thse wh had a diagnsis f heart disease r diabetes. Respndents with cmrbidities were identified and health status and physical functin, including ability t wrk, was reprted. The utcmes were measured after cntrlling fr age, sex, ethnicity and ther majr cmrbidities. 6 A c-mrbidity is the presence f tw r mre cncurrent health cnditins diagnsed in the same patient. 14

16 Imprving the Management f Cancer in the Wrkplace Thse with cancer were significantly mre likely t have a diagnsis f heart disease (36% vs. 13%) r diabetes (19% vs. 9%) than thse with n cancer diagnsis. 7 Generally, thse with cancer and either r bth heart disease and diabetes reprted prer physical health status, and previusly wrking adults under age 65 reprted higher rates f unemplyment and lwer prductivity than thse withut a cancer diagnsis. Thse with shrt-survival r multiple cancer types reprted wrse health status and mre limitatins than ther cancer r chrnic disease survivrs. In cntrast, breast cancer survivrs in general reprted similar functining and prductivity levels as thse withut a cancer diagnsis. Emplyer best practice - Cnsider cmrbidities: Address chrnic disease in an integrated strategy and t adapt wrk accmmdatin plans accrding t cancer type. 2) Wrk ability testing during treatment can predict return t wrk There are abut 200 types f cancer, and survivability varies dramatically between thse types (Canadian Cancer Statistics, 2016). But ther factrs must als be cnsidered. One study indicated that diagnsis and treatment type were strnger predictrs f return t wrk than cancer symptms. Other studies shw patient-level factrs can help predict utcmes, such as persnal expectatin f recvery, and perceptins f wrk ability and self-efficacy. If emplyers culd predict which emplyees are mre likely t stay at wrk r return fllwing treatment then available resurces culd be better rganized and directed t thse mst likely t benefit. Of curse, safeguarding persnal health infrmatin is essential. A study in the Netherlands (de Ber et al., 2008) cllected infrmatin between 1998 and 2002 frm 195 cancer patients n cancer type, treatment mde, time t return t wrk, wrk ability (WA), physical wrklad, and wrk stress at three time pints rughly six mnths fllwing a patient s last day f wrk and again six and twelve mnths later. Even 15 t 20 years ag, 24% had either stayed at wrk r returned t wrk within six mnths f diagnsis. At 12 mnths, 50% were at wrk and 64% wrked 18 mnths after they first left wrk. (WA scres imprved with time.) Self-reprted WA scres at six mnths strngly predicted return t wrk at 12 and 18 mnths independent f age and type f therapy. Abut tw-thirds f thse with the highest WA scres (8 t 10) were wrking at six mnths and almst all had returned t wrk within ne year. Mst (55% t 80%) f the survivrs with the lwest scres (0 t 5) did nt return t wrk in the first year, thugh mst (60% t 90%) f thse were back within 20 mnths. Emplyees are ften unaware f the supprt and resurces available t them. Sn after an emplyer receives ntice f an absence r disability claim is a gd time t review and explain the emplyee s 7 This crrelatin des nt suggest that cancer causes any ther disease r vice-versa. Several cmmn chrnic diseases, such as sme cancers, heart disease, diabetes and/r besity, may arise frm the same lifestyle habits (e.g., pr diet r inadequate exercise). 15

17 Imprving the Management f Cancer in the Wrkplace A Primer n Qualitative Research While the greater fcus in cancer research has been clinical and statistical, qualitative research (primarily) using interviews r fcus grups can prvide imprtant insights n cntext, prcess, histry and detailed persnal experiences. Qualitative researchers use a different apprach than their quantitative clleagues. Rather than numbers, participant cmments are the data which is then cded t help identify categries and themes. It is apprpriate t adjust research questins in light f emerging input and return t participants fr mre infrmatin. Thery develpment is the endpint, nt the starting pint. Varius tls als different than in quantitative research are used t establish quality thrugh validity, reliability and rigrus research methds, including careful ntetaking, cding, cnstant cmparisn, searching fr utlier cases, dual case reviews, and assessment fr use in ther settings. Qualitative research is simply a different apprach t defining the truth, better suited t scial envirnments like the wrkplace. benefits cverage, including EAP and health prmtin prgrams. Emplyees and/r caregivers can be directed t cancer-specific resurces, either by the emplyer when the emplyee has disclsed the cancer diagnsis, r by a third party such as the insurer if a disability claim is filed. Emplyer best practice - Triage survivrs and test wrk ability: Studies indicate higher age, lwer educatin, lwer incmes, mre cmplex treatment, chemtherapy, persistent symptms, the presence f shrt survival cancer types, and physically demanding ccupatins are mre likely t frustrate return t wrk. Ask cancer patients t cmplete a validated test f wrk ability and then target apprpriate supprt and resurces at thse with the lwest scres (P.13). Cnsider bth physical demands and cgnitive functins such as cncentratin and memry in return t wrk/stay at wrk strategies. Review all relevant benefit prgrams, including EAP and wellness services, with the emplyee. 3) Targeting wrk-related gals may be better than return t wrk Typically, return t wrk is the stated gal f clinical and vcatinal rehabilitatin effrts. This utcme is imprtant t bth emplyers and patients, wrk is nt just a means t an end, i.e., a pay cheque. Cnsiderable research indicates wrk is crucial fr hw peple see themselves (van Muijen et al., 2013; Stergiu-Kita et al., 2014). T ften, neither survivrs nr emplyers have a clear idea f hw t bring smene back t wrk r supprt them with apprpriate accmmdatins. Wells et al. (2013) cnducted a meta-synthesis (the qualitative equivalent f a meta-analysis see sidebar) f cancer survivrs, caregivers and emplyers abut their experiences related t cancer and wrking. All 25 included studies were assessed fr quality and were graded medium r better. They fund that wrk helps establish a new, mre psitive nrmal fr survivrs. It cnnects peple scially, prvides task and rle variety and imprves self-esteem. Wrk prvides financial security and access t health benefits. Still, a significant minrity (20% t 30%) f survivrs reprt diminished wrk ability after returning due t persistent struggles with fatigue, memry and physical strength. Wells et al. develped a mdel t shw the relatinships between cancer and (i) self-identity, (ii) the meaning and imprtance f wrk, (iii) family and finances, and (iv) wrk relatinships and perfrmance. The mdel is dynamic in that the imprtance r interrelatinships between elements may shift ver time and by individual. 16

18 Imprving the Management f Cancer in the Wrkplace Based n Wells et al., emplyers need t knw that: 1. Many survivrs, especially wmen, are very cnscius f changes nt nly in their appearance but als in their ability and self-cnfidence at wrk. Thse changes may take even lnger fr thers t accept, including c-wrkers and managers. 2. Many survivrs feel islated when away frm wrk during treatment and recvery. Wrkplace cntact created a welcme distractin and cnnectin. Hwever, n return, survivrs ften reprted negative attitudes (insensitive, ignrant r stigmatizing) and behaviurs (lack f supprt and accmmdatin, and smetimes discriminatin thrugh silence r gssip) by clleagues and managers. 3. Many cancer patients re-evaluate the meaning f their lives and pririties shift during treatment and recvery (see Stergiu-Kita et al., 2014). The imprtance f wrk may diminish, especially if return t wrk is difficult, r gals change. Wrk aspiratins may cme int sharper fcus. Wells et al. reprt that mst ften, survivrs realize life is shrt and wrk can becme frustrating against thse new pririties. 4. Financial needs never disappear even as ther pririties emerge. Fr many, cancer can be expensive when incme replacement is inadequate, drug treatments require significant utf-pcket csts r travel t distant cancer centres fr treatment impses new csts fr htel, fuel and fd. Adequate sick leave benefits were very imprtant (Stergiu-Kita et al., 2014). Survivrs can feel trapped int remaining where they are, and may return primarily t prtect access t health benefits, senirity r t prvide fr certain lifestyle gals. 5. Successful wrk after cancer requires supprt frm emplyers (wrk adjustments and qualified HR and ccupatinal health persnnel) and clleagues (empathy, dignity). Several studies shw that factrs such as type f jb (manual r prfessinal), physical and emtinal demands, and emplyer size and sectr have significant influences n return t wrk (see Nwruzi et al., 2009). Legislatin in varius prvinces r fr federally regulated emplyers such as financial institutins and transprtatin cmpanies may require all but the smallest emplyers t make wrkplace accmmdatins, including duties, hurs f wrk and availability fr medical appintments. Survivrs reprted their physicians and medical care team was ill-equipped t help them return t wrk and made little effrt t accmmdate a wrking patient with cnvenient appintments, a finding eched by Stergiu-Kita et al. (2014). 6. Survivrs reprted fur main strategies t help them with wrk demands: (1) cmmunicatin and negtiatin with their emplyer, (2) accepting their changed capabilities, (3) managing symptms and rebuilding cnfidence, and (4) wrking smarter by pacing themselves and fcusing n key parts f their jbs. This meta-synthesis cncludes that successful return t wrk: depends n shifts and adjustments in each aspect f what is already a cmplex set f factrs at the individual (micr), rganisatinal (mes) and scietal (macr) level. The mst successful strategies t achieve these [wrk-related] gals are likely t be multi-dimensinal while simultaneusly tailred t the individual survivr s life circumstances (p. 1213). 17

19 Imprving the Management f Cancer in the Wrkplace Emplyer best practices - Plicy: Recgnize that wrk means mre than mney fr returning cancer survivrs. Cmmunicate regularly with emplyees away frm wrk, whether fr an extended perid r even intermittently, especially frm clleagues wh have experienced similar challenges. Implement supprtive plicies, including cntinued access t health benefits while n disability. Train managers and clleagues t help avid cnfusin, frustratin, resentment, ignrance and stigma. Be aware f relevant legislatin that prtects the disabled wrker and requires reasnable accmmdatin fr return. 4) A variety f factrs affect return t wrk Return t wrk is cmplicated. It ften invlves fur systems that rarely cnsider each ther r cnnect effectively: (1) healthcare, (2) legislative and insurance, (3) persnal, and (4) wrkplace (Dewa et al., 2016, citing Lisel et al., 2005). Patients and survivrs are usually ill-equipped t navigate these systems and mediate cmpeting pririties, but generally have n chice but t muddle thrugh. A recent qualitative meta-synthesis (Stergiu-Kita et al., 2014) examined 39 studies that identified survivr return t wrk experiences and hw that prcess culd be facilitated. Quality was assessed and all but ne included study was graded as high r very high quality. The authrs identified nine factrs assciated with successful return t wrk (Table 3), categrized as persnal, envirnmental r ccupatinal. Table 3 Facilitating successful return t wrk Persnal Envirnmental Occupatinal Manageable symptms Wrkplace accmmdatins Less stressful wrk and Wrk abilities Scial supprts / Family help reduced wrk demands Cping with emtins Ensuring mtivatin Surce: Stergiu-Kita et al., Advcacy by health prfessinals Jb flexibility Navigatin was a recurrent need. Since cancer is nt the same disease nr des it affect everyne the same way, survivrs were nt sure hw well they culd wrk immediately upn their return but als weeks and mnths afterward as their capabilities and symptms changed. They needed help navigating benefits and a frank discussin abut accmmdatins. Emplyer best practices - Accmmdatin: Cancer as a disease and its attendant system f care presents many mysteries t the wrkplace parties. Determine the impact and recvery prcess n an individual basis. Cnsider supprts and accmmdatins at a persnal, envirnmental and jb level, and help survivrs navigate their disability and health care benefits, as well as ther available benefits and resurces such as secnd-pinin services and emplyee assistance plans. 18

20 Imprving the Management f Cancer in the Wrkplace 5) Mst f the time, emplyers and cancer survivrs are n the same page While the ptential fr cnflict and misunderstanding between the emplyer and an absent emplyee is a feature f all prlnged absences, mst f the time the parties want the same things and cnduct themselves with integrity and fairness. Beynd private ne-ff cnversatins, there has been limited research that identifies the types f accmmdatins that are made and the prcesses needed t help survivrs stay at r return t wrk. Stergiu-Kita et al (2016) cnducted 40 interviews with survivrs (N=16), health service prviders (16) and emplyers (8). They dcumented accmmdatins and their challenges, as well as effective prcesses. Accmmdatins included: 1. Graduated return t wrk and flexible scheduling that recgnizes nging fatigue and cgnitive impairments and the need t attend medical r rehabilitatin appintments. 2. Mdified wrk duties and expectatins, including eliminatin f nn-essential tasks. 3. Retraining and supprts at wrk that included time fr rerientatin and training n new prcedures r technlgy, jb shadwing and assistance with jb tasks. 4. Ergnmic mdificatins t the wrk setting and prvisin f adaptive aids and technlgies. Befre their diagnsis affects wrk, disclsure t the emplyer, cmmunicatin and a realistic plan until wrk departure is helpful. Survivrs reprted they were ften afraid t ask fr accmmdatins because they didn t want t appear different r needy r reveal reduced capacity t wrk (Stergiu- Kita et al, 2016; Dewa et al., 2016). Emplyees were als cncerned abut disclsure, privacy and the impact f cancer n their jb tenure (see als Stergiu-Kita et al., 2014). Dewa et al. (2016) reprted that emplyees fund disability frms difficult t cmplete, particularly when the emplyee was in the midst f debilitating treatment. Their advice fr emplyers was t respect privacy and expect that emplyees will find it difficult t talk abut their cancer. Mst emplyees want t wrk and make a cntributin fr as lng as pssible. Emplyer flexibility and a willingness t help were valued, and s was hnesty in terms f identifying emplyer expectatins, cncerns and cnstraints. Emplyers like t knw that a cancer patient expects t return t wrk after treatment (Dewa et al., 2016). Emplyers, especially smaller nes, ften fund it difficult t make the necessary accmmdatins, assuming they were aware f their legal need t d this. Requests frm survivrs r their health prfessinals were smetimes vague r subjective, such as wrk frm hme r minimize stress r reduce lifting. Until emplyers have enugh infrmatin t eliminate uncertainty abut diagnsis and prgnsis, accmmdatins may nt be clear and specific enugh t meet survivr needs. 19

21 Imprving the Management f Cancer in the Wrkplace Emplyers had t deal with strained relatinships pre- and pst-cancer, inadequate plicies and their nging need t ptimize prductivity. They were als cncerned abut setting precedents and smetimes culd nt adequately mdify r substitute wrk duties especially fr high-risk, highly physical r prfessinal psitins. Emplyer best practices - Effective cmmunicatin and mnitring: Mitigate the pssibility f misunderstanding with clear and timely cmmunicatin t survivrs and their medical advisrs. Prvide high quality infrmatin and retain qualified expertise t develp plicies and manage the scpe and cst f accmmdatin. Negtiate a safe return t wrk in a cnstructive, nging and custmized manner with the survivr. Mnitr and adjust the accmmdatin plan as needed Summary The first tw sectins f this reprt have identified key gaps and barriers t effective cancer preventin and management in the wrkplace, as well as key features f the business case and best practices fr emplyers. Many f the studies reviewed are Canadian, ensuring the relevancy f findings. Many f the best practices are nt unique t cancer, s while emplyers may use cancer as a catalyst t imprve their supprts and wrk envirnment, that investment will help ill and injured wrkers acrss the bard. Managing cancer r any chrnic disease with significant wrkplace csts requires an integrated view t managing health, including preventin, risk factrs, and emplyees with cmplex and ften highcst health issues. The evidence suggests cancer is frequently accmpanied by depressin and certainly anxiety, and the lifestyle factrs that make cancer mre likely als increase the risk fr ther cmmn chrnic illnesses such as diabetes. While it may require specialized expertise t refine, the basic steps are available frm reputable websites and frm insurers and HR and benefit advisrs. Several studies, particularly the systematic review (Mehnert, 2011) and meta-syntheses (Wells et al., 2013; Stergiu-Kita et al., 2014 and 2016), hinted at hw much is nt knwn abut return t wrk and wrk accmmdatins frm the survivr, emplyer and health prfessinal perspectives. Accmmdatins in wrk duties and wrk space must reflect reduced mental (depressin, anxiety, cnfusin, memry) and physical (fatigue, pain) capacity fr several mnths r mre fllwing treatment. This is particularly challenging fr smaller emplyers wh may never have faced this situatin, r d s nly nce every few years. Hwever, the legal duty t accmmdate t the pint f undue hardship remains. Many factrs affect hw well survivrs stay at r return t wrk at a persnal, envirnmental and ccupatinal level. Central t success is timely, sensitive and candid cmmunicatin. Fair and cnsistent plicies are critical. Dne prperly, these steps will nt nly help bring wrkers back, but keep them lyal and engaged at wrk and psitively reflect n the emplyer s reputatin. 20

22 Imprving the Management f Cancer in the Wrkplace Sectin 3 Web-based Best Practice Mdels It is clear that while much is knwn abut best practices, the key is successful implementatin, mnitring and updating. The ability t cnsistently use key fundatinal infrmatin, materials and resurces and then tailr supprts t individual circumstances appears t facilitate success. With this in mind, we have utlined belw six best practice mdels that have been implemented r pilted in Canada, the United States and the United Kingdm. Canada Tw Canadian prgrams are highlighted belw based n their cmprehensive infrmatin and prmising utcmes fr emplyers and wrkplaces. 1) Cancer and Wrk is cllabratin between the de Suza Institute, McGill University, the BC Cancer Agency, survivrs and experts acrss Canada. A new website was intrduced in Nvember 2016 that prvides a cmprehensive resurce fr survivrs, health care prviders and emplyers. It was funded by The Canadian Partnership Against Cancer (CPAC). 2) The Cancer Jurney Advisry Grup, supprted by CPAC, cmpleted three studies relevant t emplyers in (1) A literature review, a survey f cancer survivrs and caregivers, and fcus grup cnsultatin investigated return t wrk (RTW) issues. Mst survivrs experienced lwer incmes after diagnsis. In this survey, thse wh cntinued t wrk did s because they needed the mney. Mst drew incme supprt frm shrt- and lng-term disability plans and Emplyment Insurance. The delay between applicatin and receiving mney were cmmn cmplaints. Larger emplyers were much mre likely t prvide accmmdatins. Survivrs smetimes reprted difficulties interacting with managers and cwrkers. A large majrity experienced fatigue and cgnitive issues after RTW. Nine in 10 caregivers reprted missing wrk and reduced incme, and many reprted similar issues as survivrs in stress, cgnitive impairment and pr supprt frm wrk clleagues. Many resurce gaps were identified, e.g., incme supprt infrmatin, critical illness and disability insurance fr the self-emplyed, and accmmdatin infrmatin fr small emplyers. A wrking grup f survivrs, insurers, emplyers and cancer prfessinals was prpsed t create cancer resurces abut accmmdatin and cancer side effects. (2) An envirnment scan f RTW prgrams identified and reviewed 90 resurces. Sixteen key infrmants were interviewed abut 21 RTW prgrams. 21

23 Imprving the Management f Cancer in the Wrkplace Mst f the 90 RTW services implemented in Canada fcused n mental health, and included prgrams, services, reprts and bklets, guides and infrmatin sheets. Cancer-related best practices had nt been evaluated. Acrss five cuntries and varius diseases, mst RTW material fcused n disclsure, stigma, wrkplace and jb accmmdatin, stress, cmmunicatin practices and legal issues. There was limited fcus n an emplyee s early needs after diagnsis, nr n hw emplyees cped nce they were back at wrk. The reprt recmmended develpment and evaluatin f RTW-fcused pilt prjects invlving cancer patients, health prfessinals and emplyers. (3) Wrkplace supprts were identified thrugh 41 interviews with senir representatives frm emplyers, insurers, law firms and unins. Three fcus grups f 27 senir human resurce managers were als cnducted. United States Many factrs interact t affect emplyees when wrk is affected by a serius chrnic disease like cancer. These include the emplyee s health and wrk respnsibilities and desire t return t wrk, the emplyer s size, culture and resurces, and the flexibility exhibited by managers and c-wrkers. Emplyers generally expressed high supprt fr affected emplyees and understd the emplyee s absence and return t wrk created significant financial pressures fr bth parties. Emplyers wanted better cmmunicatin related t their rles and respnsibilities in accmmdating chrnic illnesses, as well as educatin, training and resurces fr managers and HR team members. 3) Wrkplace Transitins fr Peple Tuched by Cancer This prgram was develped by Anthem, Inc., Cancer and Careers, Pfizer, SEDL (an affiliate f American Institutes fr Research), and the U.S. Business Leadership Netwrk (USBLN). An etlkit was develped fr managers and human resurces persnnel and tested at six large US emplyers in Its purpse was t help cancer survivrs stay at r return t wrk. The etlkit built n existing cmpany plicies and prcedures, and prvided infrmatin and resurces n tpics such as privacy, disability, medical leave and insurance alng with practical ideas fr wrkplace adjustments and accmmdatins. Almst 600 emplyees with a histry f cancer cmpleted a baseline and a fllw-up survey five mnths later abut quality f life and varius wrk characteristics including accmmdatin. Managers were surveyed t assess etlkit characteristics, including usability and acceptability. 22

24 Imprving the Management f Cancer in the Wrkplace The pilt study fund that participants received the requested accmmdatin and fund their wrk envirnments t be supprtive. Quality f life increased and the likelihd f nt receiving a requested accmmdatin decreased between the baseline and the fllw-up surveys. Hwever, the survey culd nt determine if these findings were attributable t the etlkit itself. Satisfactin with the etlkit was very high amng the managers wh participated in this study. 4) Cancer Cntinuum f Care: Emplyer Strategies fr Managing the Mdern Disease The Natinal Business Grup n Health (NBGH) reprted n a full range f wrkplace issues that a cancer diagnsis brings, and develped a wrkplace mdel (belw) fr cancer management. While aimed at US emplyers, many f the resurces, including the mdel belw, may be useful in Canada, r culd be adapted relatively easily. Surce: NBGH. See: 5) Managing Cancer at Wrk was develped by Jhns Hpkins Medicine in Baltimre, MD and BlueRush Digital Media in Canada. This new wrkplace cancer prgram includes an ptinal cnsult with a Nurse Navigatr. A 12-mnth pilt prgram in the US was recently cmpleted fr emplyees f Jhns Hpkins Medicine and Pitney Bwes (Jinnett, Bradley and Shckney, 2015). During the pilt, it was reprted that mre than 90% f Jhns Hpkins emplyees using the prgram wrked while being treated. United Kingdm 6) Macmillan Cancer Supprt: Macmillan at Wrk Macmillan is a UK charity that prvides advice, infrmatin and resurces t supprt cancer patients and caregivers. Macmillan at Wrk prvides emplyers with training, cnsulting services, infrmatin and supprt, and varius resurces including an e-newsletter and cancer tlkit. 23

25 Imprving the Management f Cancer in the Wrkplace Cnslidated Emplyer Best Practices The fllwing six recmmendatins have been listed tgether here fr ease f reference. The page numbers where they riginally appeared are nted. Minimize replacement csts: Ensure an emplyee diagnsed with a serius illness like cancer feels welcme in staying in their psitin r returning t wrk (RTW) after treatment. Prvide tangible supprts such as flexible time, graduated RTW plans, ergnmic adjustments, assistance with heavy wrk, and mre frequent rest. Cmmunicate with wrkplace clleagues and managers t set the stage and create reasnable expectatins. (P.9) Cnsider cmrbidities: Address chrnic disease in an integrated strategy and t adapt wrk accmmdatin plans accrding t cancer type. (P.13) Triage survivrs and test wrk ability: Studies indicate higher age, lwer educatin, lwer incmes, mre cmplex treatment, chemtherapy, persistent symptms, the presence f shrt survival cancer types, and physically demanding ccupatins are mre likely t frustrate return t wrk. Ask cancer patients t cmplete a validated test f wrk ability and then target apprpriate supprt and resurces at thse with the lwest scres (P.13). Cnsider bth physical demands and cgnitive functins such as cncentratin and memry in return t wrk/stay at wrk strategies. (P.14) Plicy: Recgnize that wrk means mre than mney fr returning cancer survivrs. Cmmunicate regularly with emplyees away frm wrk, whether fr an extended perid r even intermittently, especially frm clleagues wh have experienced similar challenges. Implement supprtive plicies, including cntinued access t health benefits while n disability. Train managers and clleagues t help avid cnfusin, frustratin, resentment, ignrance and stigma. Be aware f relevant legislatin that prtects the disabled wrker and requires reasnable accmmdatin fr return. (P.15) Accmmdatin: Cancer as a disease and its attendant system f care presents many mysteries t the wrkplace parties. Determine the impact and recvery prcess n an individual basis. Cnsider supprts and accmmdatins at a persnal, envirnmental and jb level, and help survivrs navigate their disability and health care benefits, as well as ther available benefits and resurces such as secnd-pinin services and emplyee assistance plans. (P.16) Effective cmmunicatin and mnitring: Mitigate the pssibility f misunderstanding with clear and timely cmmunicatin t survivrs and their medical advisrs. Prvide high quality infrmatin and retain qualified expertise t develp plicies and manage the scpe and cst f accmmdatin. Negtiate a safe return t wrk in a cnstructive, nging and custmized manner with the survivr. Mnitr and adjust the accmmdatin plan as needed. (P.18) 24

26 Imprving the Management f Cancer in the Wrkplace Sectin 4 Guiding Principles and Recmmended Practices fr Wrkplace Cancer Management These Guiding Principles and Recmmended Practices have been develped by the authrs t identify practical ways fr all wrkplace health stakehlders t better address cancer. Our recmmendatins reflect the research summarized in this paper, stakehlder insights, and the authrs wn experience. 1. Health Benefits a. Cverage: Cancer treatments are cvered based n clinical and ecnmic value, using cnsistent standards f evidence. b. Facilitate access: Cnnect and explain the resurces available thrugh drug, paramedical, EAP benefits and ther resurces. Remve barriers t access fr medically apprpriate treatments. With infrmed cnsent, direct individuals t targeted resurces. c. Prven cancer preventin and management techniques such as screening r targeted educatinal prgrams are an integral part f benefits and health plan design. Incentives are prvided where apprpriate. d. Cnsidering emplyee incmes, reasnable ut-f-pcket threshlds are established such that cst is nt a barrier fr patients t btain needed medicatins. e. Specialty Pharmacy Patient Supprt 2. Disability Prvide prgrams and case management resurces. Practively mnitr patient adherence and side effects. Prvide infrmatin n prgrams that can assist patients with the csts f prescriptin drugs. Ensure that prgram staff have nclgy--specific knwledge in rder t crdinate with ther resurces as part f a cmprehensive cancer slutin. With apprpriate cnsent, enable caregivers t interface n a patient s behalf. f. Identify and manage c-mrbidities, bth physical and mental. g. Engage physicians: Make relevant plan infrmatin available at time f prescribing, including prir authrizatin criteria. a. Prvide adequate sick leave and disability benefits t avid emplyees returning t wrk prematurely. Prtect access t health benefits, senirity, etc. b. Adpt cancer-specific prtcls, based n clinically validated infrmatin and guidelines. Train disability case managers t actively manage cancer cases. c. STD/LTD prtcl shuld include rutine peratinal crdinatin with the EAP prvider. 25

27 Imprving the Management f Cancer in the Wrkplace d. When emplyee behaviral issues r cgnitive disrders arise that affect treatment cmpliance, cnsult psychlgists, scial wrkers, behaviural health specialists r health caches. e. Establish accmmdatins t stay at wrk r return t wrk. Open discussins and negtiatins with survivrs as early as pssible t build trust and establish needs f bth parties. Ask cancer survivrs t cmplete a validated test f wrk ability, including physical demands and cgnitive functins. Cnsider changes t wrk rle and wrk envirnment t accmmdate reduced capacity t wrk. Develp and mnitr the accmmdatin plan; revise as needed. Assess patient-level factrs: persnal expectatin f recvery and perceptins f wrk ability and self-efficacy. f. Prvide Partial Disability benefit t allw fr intermittent emplyee ability t wrk during cancer treatment and recvery. 3. Measurement a. Establish a baseline f verall cst and burden f cancer and ther chrnic diseases. b. Determine relevant gals and pririties fr survivrs and caregivers, and identify best practices in cancer prgram design. c. Link all cancer and related health csts and measures, and assess the brader impact n key human resurce and rganizatinal perfrmance metrics. d. Evaluate plicies, prgrams and practices at regular intervals. e. Cnsider interviewing survivrs as a means t better understand the impact f cancer and hw emplyers can imprve their supprt and resurces. f. Seek t demnstrate benefit beynd the wrkplace, e.g. evaluate impact f wrkplace cancer initiative n public health system utilizatin. 4. Psychscial Supprt a. Wrkplace health strategy shuld incrprate cancer and typical c-mrbidities int its apprach t chrnic disease management. b. Emplyee Assistance Plans shuld be available and, with infrmed cnsent, practively deplyed t help cnnect and supprt survivrs n leave r at wrk, and family caregivers. c. Ensure clear, timely and apprpriate cmmunicatin t supervisrs, c-wrkers and medical advisrs abut a cancer patient s r survivr s wrk intentins and needs. d. Target mre wrk-related supprt and resurces at thse with the greatest needs and wh are likely t return. Prvide different supprt t emplyees with shrt-survival cancers. 26

28 Imprving the Management f Cancer in the Wrkplace 5. Caregivers e. Keep emplyee cnnected t wrk when n leave. f. Prvide training and supprt t managers and c-wrkers. 6. Plicy a. Ensure caregivers are made aware f legislated leaves ffered by the federal and prvincial gvernments, including CPP and EI prgrams. b. Fr fllw-up: Further study f the burden f cancer n caregivers is needed t create a strnger business case fr caregiving as a pririty fr emplyers. a. Cnsider the financial, peratinal and cultural impacts f cancer and ther relevant chrnic diseases in human resurce plicy, prgrams and practices. b. Cnsider different needs f emplyees and family members diagnsed with cancer. c. While many cancers have lifestyle risk factrs, ensure the wrk envirnment is apprpriately prtected frm ccupatinal hazards in cmpliance with all laws and regulatins. Ensure that persnal prtective equipment is functinal and readily available and that emplyees are prperly trained. d. Implement a plicy t supprt caregivers. e. Develp a plicy n service prvider perfrmance criteria. 27

29 Imprving the Management f Cancer in the Wrkplace Sectin 5 Links between Emplyer and Prvincial Cancer Resurces Each prvince in Canada has a smewhat different cancer management mdel. There are prvincial agencies in sme but nt all prvinces. Agencies in BC and SK prvide all cancer-related services and drugs. In ther prvinces, chemtherapy drugs are administered thrugh hspital frmularies. Regardless f mdel, all prvinces prvide access thrugh specialized cancer centres t intravenus cancer drugs at n cst t patients. Ontari 8 and all fur Atlantic Canadian prvinces d nt cver rally-administered cancer drugs, leaving these t private insurance plans r persnal expenditure. Fr emplyers perating in mre than ne prvince this creates the same general challenge as integrating wrkplace drug and health benefit plans with prvincial medicare systems. Table 4 Prvincial Cancer System Cmpnents Prvince BC AB SK MB ON QC NB NS PEI NL Interprvincial Ministry: Cancer Agency/Netwrk/Centre Prgram(s) Ministry f Health: BC Cancer Agency Alberta Health Services: CancerCntrl Alberta / Outpatient Cancer Drug Benefit Prgram Ministry f Health: Saskatchewan Cancer Agency Manitba Health: CancerCare Manitba / Hme Cancer Drug Prgram Ministry f Health and Lng-Term Care: Cancer Care Ontari Ministère de la Santé et des Services sciaux: Directin québécise de cancérlgie Department f Health: New Brunswick Cancer Netwrk Ministry f Health and Wellness: Cancer Care Nva Sctia / Drug Assistance fr Cancer Patients / Palliative Care Drug Prgram Ministry f Health and Wellness: PEI Cancer Treatment Centre Ministry f Health and Cmmunity Services: Eastern Health Cancer Care Prgram Canadian Assciatin f Prvincial Cancer Agencies (CAPCA) Nte: CAPCA prvides links t all prvincial members here. In June 2016, the Canadian Cancer Sciety (Ontari) and CanCertainty rganized a rund-table discussin n the current state f access t rally administered ( take-hme ) cancer drugs (THCDs) and t identify cllabrative pprtunities t imprve access t thse prducts. Thirty-fur peple attended, including representatives f the Ontari Ministry f Health and Lng-Term Care, Cancer Care Ontari, private insurers, patients, patient grups, emplyers, pharmacists, the pharmaceutical industry and nclgists. The reprt f that meeting is available here. The Reprt identified a number 8 Ontari s Exceptinal Access Prgram may cver certain ral cancer drugs nt cvered by the Public Drug Benefit frmulary fr a limited duratin fr thse eligible fr the Ontari Drug Benefit Prgram. 28

30 Imprving the Management f Cancer in the Wrkplace f issues and bstacles, including a lack f equity fr patients, a difficult and smetimes lengthy administrative prcess, increasing ut-f-pcket csts and a lack f integratin between prvincial and private drug plans. Amng the Next Steps in the reprt was a call t better crdinate benefits between Cancer Care Ontari, Ontari Public Drug Prgrams and private insurers, including the develpment f cnsistent, evidence-based apprval prcess fr THCDs. Since the June 2016 meeting and subsequent reprt, the Canadian Cancer Sciety and CanCertainty have cntinued t cllabrate, attending meetings with senir-level staff at the Ministry f Health and Lng Term Care and Cancer Care Ontari. Several issues are being discussed including access t THCDs, patient educatin, the Exceptinal Access Prgram, and the Trillium Drug Prgram. Sme prgress is being made, hwever advcacy t imprve the delivery and access t THCDs in Ontari will cntinue. An imprtant issue fr emplyers is the sustainability f their drug prgrams. THCDs are very expensive thugh ften very effective therapies with general cverage in just half the prvinces. In the medium and lng term, a wrkplace cancer mdel shuld prmte a cnsistent and equitable apprach t cverage fr the mst effective cancer drugs regardless f their frm (IV r ral). Beynd access t drugs, an effective cancer mdel fcused n the whle persn shuld accmmdate patients and survivrs wh want t wrk with cnvenient treatment and nging appintments at hspitals and with physicians. This will include cmmunicatin that helps cancer patients and survivrs knw their entitlements frm gvernments and their emplyer. A patient-centred apprach requires wrkplaces and health system resurces 9 t be aligned: 9 Fr this illustratin we have assumed public health is incrprated int the health care system. 29

31 Imprving the Management f Cancer in the Wrkplace There exist significant pprtunities t enhance utcmes and better manage verall csts by crdinating cancer resurces t supprt the physical and mental health f the whle patient. This merits further explratin in Phase 2. 30