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Themes from the MapsEight themes emerged which were consistent across maps and highlight gaps, barriers andopportunities for improvement within the system.10Theme 1Both patients and providers are frustrated by the inconsistency and/or lack ofcommunication as patients move through the systempg. 11Theme 2The current system is not operating in a shared care model, placing the onuson patients to coordinate their carepg. 15Theme 3Cultural safety and humility is critical to the wellness of Indigenous patientspg. 20Theme 4Social and emotional support is integral (not just nice to have) to supportingpatients and their families through cancerpg. 23Theme 5Patients in rural settings face logistical and financial challenges whenaccessing treatment.pg. 26Theme 6Patients desire a whole-person approach to carepg. 29Theme 7A sense of trust is often missing in the patient-provider relationshippg. 32Theme 8There is value in creating environments or networks for patients and providersto connect and collaborate to improve the systempg. 34BCPSQC.ca

THEME 01“I had a FIT test and physical inNovember and received a letterfrom the Cancer Agency thatmy levels were approximately30 times higher than the upperthreshold value. I went to seemy GP and was told my casewas now under BC Cancer andmy GP has nothing to do withit. Eleven months later I hada colonoscopy. I had a lot ofmental distress.”- Patient PartnerBoth patients and providers are frustrated by the inconsistencyand/or lack of communication as patients move through the systemPatients said they feel anxiety and stresswhen care providers do not communicatewell with each other. Patients were often notgiven a timeline for when they would hearback from various providers (“Don’t phone us,we’ll phone you.”) or how long it would take tocomplete tests and receive results.There were multiple accounts from patientswaiting weeks or months to get a confirmeddiagnosis, which heightened their feelingsof anxiety and not being in control of theircare. Patients were frequently unable to findout where they were in the line-up for testsor results despite multiple efforts to find thisinformation.When patients had questions about sideeffects or treatment plans, some cited littleguidance as to who to connect with aboutthese questions. Many patients wanted tospend time with a nurse to talk about theirconcerns but often there was no nurseavailable in person or by phone.BCPSQC.ca“Open-ended waitingmakes me crazy. Ibecome foul, aggressive.It’s a swirling vortex ofemotional crap. Standingin front of someone,advocating for myself,is the only way I knowhow to. You have to bedemanding, boisterous,almost un-Canadian.”- Patient Partner11

“The oncology team inTerrace was amazing. I amgrateful for them. Theywent above and beyond.” Patient Partner“My doctor referred me to the surgeon.The surgeon asked if I had a biopsy, andI said, ‘No, that’s why they sent me here.’He said, ‘The radiologist does thebiopsy, so you need to ask him. I’m goingto write down on a sheet of paper,you’re going to walk across the hospital,and you’re going to stand in x-ray untilyou get an appointment.’Ten days later, I had the biopsy.”- Patient Partner12Many patients did highlight that once theyhad a confirmed diagnosis, their care movedquickly, particularly at BC Cancer. Patientshad very positive experiences when theirtreatment plan was clearly laid out and wellcommunicated. This positive experience hada lasting impact on subsequent aspects oftheir care.“The Cancer Agency stepped up, workedthrough lunch hours, after hours, to getme in shape before my 35 consecutivedays of radiation and three weeks ofchemo. It was like a conveyor belt, whichis good because that means they knowwhat they are doing.”- Patient PartnerProviders echoed this sentiment, saying that when a patient has experienced a long wait orwhen their diagnosis journey has not gone well, “The patient is so traumatized and that nevergoes away. I spend more of my time with them trying to reassure them and build trust in thesystem.”Providers mentioned that in some of their practices they told patients when they will hear fromtheir clinic and providing this timeline has reduced follow-up phone calls by patients wonderingwhen they will hear back from the system.Patients voiced how they were often given inconsistent information from various providers,there did not seem to be a standard way of receiving care in the system, and there was anoverall lack of care coordination. Providers echoed this sentiment, saying that some physicianslike certain tests to be done in advance of seeing the patient, while others order the tests oncethey see the patient.BCPSQC.ca

Patients also noted that there is no standardway of receiving the diagnosis. Some patientsreceived their diagnosis from their GP in theiroffice, while others received it on the phone orheard it from a specialist.“I got to my friend’s house and I received a call and he (the doctor) said I havecancer. I was at my friend’s house, but what if I was driving on the road when Igot the information? Or on the phone while living alone?”- Patient Partner“I need access todedicated people withrapid access to quickadvice because I havea test result that hasscared me. So, whatare my next steps?”Providers agreed that there should be a morestandardized approach across all physicians/NPs when referring a patient to a specialist,including providing a complete medical historywith the referral. Providers voiced that there isa lack of consideration for how sick someone iswhen expediting their need for further testing.- ProviderSome providers tell patients to go to theemergency department to get diagnosticsdone (“It’s a workaround that everyone isdoing out of necessity.”) because of the waitfor diagnostics. Other providers are able toexpedite a patient’s testing based on personalrelationships they have with specialists.Diagnostics are typically only available five daysa week, which does not help ease the backlog.Patients voiced concerns about why diagnosticBCPSQC.catests were not done seven days a week whenmachines are sitting idle and patients arewaiting. Operating rooms also mostly operateonly five days a week, which limits the numberof cancer surgeries that can be done.GPs noted that as they have lost their hospitalprivileges, they no longer have a personalconnection with the specialists, which GPsthought left them unable to expedite care fora patient. GPs mentioned that they want tobe able to talk to an oncologist to get adviceabout how the referral should proceed whenthey are concerned about a patient. Patientsalso wanted to know what number theyshould be calling when they had questions, asthis information was often missing from theirdischarge or treatment instructions and noone was coordinating their overall care.13

Providers suggested that including oncology aspart of Rapid Access to Consultative Expertise(RACE)i would help PCPs ensure that referralswere being made to the appropriate place.Access to RACE would also ensure thatPCPs offer the latest treatments to patientswhich they may not otherwise be aware ofdue to rapid advances in cancer care. Also,ensuring that GPs were using the Pathwaysiisystem would help them make referrals to theappropriate specialist.CHANGE IDEASCommunicate expected wait times and potential treatment options to patientsat every step of the journey.Create consistent referral processes to ensure all GPs know what tests need tobe completed before seeing a specialist.Create consistency in where, when and by whom patients are given theirdiagnosis.Provide patients with an information guide and outline next steps to help themprocess their diagnosis.Develop a system for care coordination which works with patients as they gothrough the cancer process.Add oncology to RACE.Promote the use of the Pathways system to GPs for making oncology referrals.Provide diagnostic imaging and surgery seven days a week.i RACEis an innovative model of shared care where primary care providers can call one phone number and choose from a selection of specialty services for real-time telephoneadvice. In the model, the telephone call is routed directly to the specialist’s cell phone or pager for “just in time” advice.ii Pathways is a web-based directory that connects family doctors and specialists to streamline referrals. Pathways was developed by the Fraser Northwest Division of FamilyPractice, where it was piloted successfully and found to offer genuine solutions to GP-specialist referral issues. Through a password-protected portal, GPs can see the accurate waittimes for each specialist on the Pathways system. There is work ongoing to enable electronic referrals through Pathways but at this time, it is only possible to see the wait times foreach specialist registered in the system.14BCPSQC.ca

THEME 02“I really think peopleare doing the best theycan with what theyhave. Everyone isn’tcommunicating. I wasexpected to keep thethread of communication,but I didn’t always. I was32 and had a lump. The GPsaid I was young and it wasprobably an ingrown hair.”- Patient PartnerBCPSQC.caThe current system is not operating in a shared care model, placingthe onus on patients to coordinate their care.Throughout the mapping sessions, patientsexpressed frustration and shock at how muchthey would need to advocate for themselvesand coordinate their own care. Patients wereparticularly troubled by the transition betweentheir PCP and specialists, and noted that theyneeded to repeatedly inform their PCPs abouttheir care. Furthermore, there is a gap in thesystem to support patients with providingorganized and consistent care coordination.As one patient said, “I have to take 100%responsibility for my care.” This ties inclosely to the first theme regarding a lack ofcommunication. Providers noted that strongcommunication is needed to determinewhich health care provider is coordinatingthe overall care. This is particularly importantwhen patients are transitioning from onehealth care provider to another. The patient isthe only person at every appointment and isoften expected to carry information betweenproviders.“Unless the oncologistlists the potential impactof the treatments, the GPwon’t know to look forthem.”- Patient Partner15

“A care plan givesthe opportunityfor informationtriggers.”- Patient Partner“A lot of our people don’tcomplain and that scares the hellout of me because they just getshuffled around like nothing.”When patients are discharged from their cancer care team, they often return to the care of aPCP who has not been kept up to date with their care. Patients told stories of their dischargereports not being sent, being sent to the wrong doctor, or signing up for clinical trials becausethey wanted to stay connected to their oncologists. Patients were worried that PCPs would notknow what to look for in their post-treatment if they were not given a proper continuing careplan. Patients advocated that a checklist should be given to PCPs, so they would be aware ofthe treatment that patients had received, and what to look for regarding ongoing care and sideeffects – including long-term side effects which patients may experience many years after theirtreatments.One of the risks of not having centralized care coordination is how, when patients do not advocatefor themselves, or are unable to, they can often be left with many unanswered questions. Dueto historic and current negative encounters with health care professionals, some Indigenouspatients said they do not feel comfortable questioning, or advocating for, their care.iii– Lisa Bourque BearskiniiiPlease note, this patient requested to be identified in this report and signed a consent form to this effect.16BCPSQC.ca

“[BC Cancer] neverimpressed on him the needto meet with his GP. Hedied of heart attack oneyear post cancer surgery.”- ProviderProviders wanted to stress the importance of keeping the PCPs in the circle of care for patientsas they move through the cancer system. Providers said that the cancer system is looking afterthe patient from a cancer perspective, whereas a PCP is still responsible for the rest of their care.Regular screening, immunizations, and check-ups should continue to be done by the PCP.It must be acknowledged that many patients do not have a PCP, which creates a major barrier inbeing able to receive continuing care between a specialist and a PCP. In the Indigenous session,one-third of participants did not have a PCP and others would soon lose theirs as their providerswere close to retirement. As one patient said, “I didn’t have a GP to loop back to after. I’mcompletely alone now.”Patients indicated that the discharge back to primary care felt ‘like jumping off a cliff’ as they wereconcerned there would be no continuity of care from their cancer team to primary care. SomeNPs in the community are trying to fill the gap by providing ongoing follow-up care to patientswith cancer once their acute treatment with the oncologist is complete.BCPSQC.ca17

Providers were resounding in their support of a shared care model for patient care to bettersupport patients. A true team-based approach to care would allow each provider to know theirrole throughout the journey and help to increase trust with patients. Providers mentioned theincreasing frequency of interdisciplinary care conferences for complex cases and the value thatthey provide both the health care team and patients and families. Some patients voiced theneed to have more decision aids available, rather than general cancer information, to help informdecisions about treatment options. A good example of interdisciplinary care came from severalpatients who had excellent relationships with their pharmacists, who worked with the patients’care teams and found ways to cover medications for them when the costs became prohibitive.“I was so impressedby the Indigenouspatient navigator inthe hospital. She wasamazing.”– Lisa Bourque BearskinProviders suggested that having a patient portal available would “revolutionize the patientexperience.” A patient portal would allow patients to see their cancer journey, where they wereat in the stages of treatment as well as their appointments, reports and images. It may also openthe opportunity to explore virtual appointments with providers, thereby reducing the need forpatients to travel to all appointments.18BCPSQC.ca

Patients also raised the idea of having a wayto track where they were in the health caresystem. Just like one can track a package sentin the mail, patients wanted to be able to seewhere their case was in the queue at eachpoint in the journey.The role of a patient navigator (sometimescalled a nurse navigator or system navigator)came up in every mapping session. Someclinics have already implemented the role ofthe patient navigator which ensures that theproper connections and treatment are beingprovided for the patient.In many cases, a navigator has allowed patientsto move through the system faster and, as oneprovider stated, “Nurse navigators are lifechanging.”ivCHANGE IDEASCreate a way for patients to track where they are in the cancer journey system. Patientswant to know that their case is being processed, even if there is going to be a wait time.Ensure every patient and their PCP is given a continuing care plan with triggers forwhat to look for post-treatment.Encourage the widespread adoption of patient navigators in the cancer system.Develop a patient portal for patients to track their appointments, progress andtreatment in the system.Ensure all patients know the importance of continuing to see their PCP for their healthduring their cancer treatment and upon discharge from their cancer team.ivCreate mechanisms to support true shared care models to support patients, includingGPs, NPs, specialists, nursing, and allied health professionals.It is recognized that attachment to a PCP remains an ongoing issue for many patients in BC and there are strategies working on this issue in the province.BCPSQC.ca19

THEME 03“Every time I went tothe room where theydid the radiation,I closed my eyes.Every time I closedthem, I could feel myancestors with meand supporting me.”- Patient PartnerCultural safety and humility is critical to wellness of IndigenouspatientsIndigenous patients and their families notedthat the importance of the role of traditionalwellness and healing in their cancer journeycannot be overstated. Indigenous patientsrepeatedly referenced the support receivedfrom ancestors and families as well as theirbelief in the significance of spiritual practice inhelping stay positive and resilient throughouttreatment.Many patients identified specific practicessuch as sweats, connecting with the land,being brushed with cedar, praying with Elders,taking cold water baths and using traditionalmedicines as practices which were importantin supporting their health and wellness.Patients identified how important it was toinclude their families in their cancer journeysin order to gather strength and positivity tomake it through the treatment. For many,family members were advocates in the system,while others relied on families to ensure theywere given traditional foods known to providestrength.20“We had a family sweat.We prayed at every meal.The prayers really work inhelping to stay positive.”- Patient PartnerBCPSQC.ca

“I ended up not communicatingwith my health care team aboutthe traditional medicine I wastaking. There was a seriousside effect of my silence. Withradiation, I used bear fat to keepmy skin moist, but I was startingto burn. The nurse said, ‘You’renot using cream?’ and I said, ‘No,I’m using bear fat.’Bear fat wasn’t good becauseit was actually intensifying theradiation and I ended up gettinga permanent burn on my lung.”– Lisa Bourque BearskinBCPSQC.caMany patients noted they used traditionalhealing to support their chemotherapy andradiation treatments, and some who did chosenot to disclose it to their health care providers.Patients thought they were typically notsupported by providers in conversations abouttraditional healing and many had experienceswhere they felt judged and, therefore,remained silent.There can be significant risks to patient safetywhen patients feel they must stay silent abouttheir use of traditional healing and medicinewhen also receiving Western treatments.Patients also noted that one cannot justtake traditional medicines like you would aWestern therapy. Traditional medicines mustbe incorporated into a system of beliefs andclosely integrated with spiritual practices inorder to be effective.“The doctors scared me.I had a whole case ofmedicine from my aunties.I used it a few times, butthe doctors said it mightinteract with my (Western)medication so it’s beensitting in my fridge for thepast six months.”- Patient Partner21

Indigenous patients had a variety of experiencesof being supported in their decisions toincorporate trad

The Value of Patient Journey Mapping Patient journey mapping is an effective way to explore and capture the emotional, mental and social experiences of individuals and groups interacting with a complex system. 2 The process has been successfully used by health system