M2WT-CaseStudy-CitySites-WEB_b

ManagingTwo Worlds Together Stage 3: Improving Aboriginal Patient Journeys— City Sites Case Studies Janet Kelly Natalie McCabe Wendy McInnes Michael Kirkbride Amy Graham Damian Rigney Annapurna Nori

CoverArtwork:Kuntjanu – MingkiriTjuta Tjukurpa(Marsupial MouseDreaming)by Rama Sampsonpainting (no.74),courtesy BetterWorld Arts

ManagingTwo Worlds Together Stage 3: Improving Aboriginal Patient Journeys— City Sites Case Studies Janet Kelly Natalie McCabe Wendy McInnes Michael Kirkbride Amy Graham Damian Rigney Annapurna Nori

© Flinders University, 2015ISBN 978-1-921889-33-2First published in April 2015This work has been produced by Flinders University and is published as part of the activities of The LowitjaInstitute, Australia’s national institute for Aboriginal and Torres Strait Islander health research, incorporatingthe Lowitja Institute Aboriginal and Torres Strait Islander Health CRC (Lowitja Institute CRC), a collaborativepartnership funded by the Cooperative Research Centre Program of the Australian Government Departmentof Industry.This work is the copyright of Flinders University. It may be reproduced in whole or in part for study or trainingpurposes, or by Aboriginal and Torres Strait Islander community organisations subject to an acknowledgmentof the source and no commercial use or sale. Reproduction for other purposes or by other organisationsrequires the written permission of the copyright holder(s).Downloadable pdfs of the Managing Two Worlds Together. Stage 3: Improving Aboriginal Patient Journeys—City Sites Case Studies and the other four Case Studies, along with printed copies and a pdf of the StudyReport and a writeable pdf of the Workbook, can be obtained from:Department of Health Care Management The Lowitja InstituteFlinders University PO Box 650, Carlton SouthBedford Park, SA 5042 AUSTRALIA Vic. 3053 AUSTRALIAT: +61 8 8201 7755 T: +61 3 8341 5555F: +61 8 8201 7766 F: +61 3 8341 5599E: [email protected] E: [email protected]: www.flinders.edu.au W: www.lowitja.org.auAuthors: Janet Kelly, Natalie McCabe, Wendy McInnes, Michael Kirkbride, Amy Graham, Damian Rigney andAnnapurna NoriManaging Editor: Jane Yule @ Brevity CommsCopy Editor: Cathy EdmondsDesign and Print: Inprint DesignFor citation: Kelly, J., McCabe, N., McInnes, W., Kirkbride, M., Graham, A., Rigney, D. & Nori, A. 2015,Managing Two Worlds Together. Stage 3: Improving Aboriginal Patient Journeys—City Sites Case Studies,The Lowitja Institute, Melbourne.

iiiTable of ContentsThe Managing Two Worlds Together Project vAcknowledgments viAbbreviations and Terms viAbout the City Sites Case Studies 1The Patient Journey Mapping Process 3Case Study A: Supporting Patients in a Metropolitan Hospital 4Case Study B: Using the Tools across Disciplines 14Case Study C: Using the Tools in an Emergency Department 16Case Study D: Adapting the Tools for a Youth Health Assessment Tool 20Diagrams, Figures and Tables v 3 Diagram 1: The three stages, focus and outcomes of the Managing Two Worlds Together project 5 Diagram 2: The process of using the Aboriginal PJM tools – an overview 6 6 Case Study A – Figure 1: Visual mapping 9 Case Study A – Table 1: Dimensions of health Case Study A – Table 2: Underlying factors 15 Case Study A – Table 3 (Part a): Multiple perspectives – first diagnosis to surgery 17 Case Study B – Figure 1: Visual mapping – an explanation of the patient 17 journey mapping purpose and process for city hospitals 19 Case Study C – Table 1: Dimensions of health 21 Case Study C – Table 2: Underlying factors Case Study C – Table 3: Multiple perspectives Case Study D – Table 3: Multiple perspectives – youth project  

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vThe Managing Two Worlds Together ProjectThe Improving Aboriginal Patient Journeys (IAPJ) consist of a set of tables that enable an entire patientstudy is the third stage of the Managing Two Worlds journey to be mapped across multiple health andTogether (MTWT) project. The MTWT project geographic sites, from the perspective of the patient,investigated what works well and what needs their family and health staff in each location.improvement in the health system for Aboriginalpeople who travel for hospital and specialist care Stage 3 (2013–15) involved an expanded researchfrom rural and remote areas of South Australia and team and staff participants working together inthe Northern Territory to city hospitals. a range of health care and education settings in South Australia and the Northern Territory. TheStage 1 (2008–11) focused on understanding aim was to modify, adapt and test the Aboriginalthe problems that occur within and across patient PJM tools developed in Stages 1 and 2. As thejourneys, and the barriers and enablers to access, project progressed the basic set of tools was furtherquality and continuity of care. Challenges and developed with flexible adaptations for each site.strategies from the perspectives of individual This involved three steps – Preparing to map theAboriginal patients, their families, and health and patient journey, Using the tools and Taking action onsupport staff and managers were examined using the findings – organised into 13 tasks with promptinterviews, focus groups and patient journey questions. Careful consideration was given as tomapping. Complex patient journeys were analysed how the information that emerged from the useand a patient journey analysis tool was developed of the tools could best highlight communication,collaboratively with staff, patients and carers. coordination and collaboration gaps within and between different health care providers (staff,Stage 2 (2012) focused on possible solutions and services and organisations) so as to inform thestrategies. As the research team shared findings with design of effective strategies for improvement. Thesehealth care providers, case managers and educators were compared and combined with existing policies,in a range of different health and education settings, practice and protocols.the potential and scope of the Aboriginal patientjourney mapping (PJM) tools for quality improvement, Diagram 1 (below) sets out these three stages, alongtraining and education emerged. The resulting tools with the focus and outcomes of each stage.Stage 1: 2008–11 Stage 2: 2012 Stage 3: 2013–15Focus: Understanding the Focus: Exploring solutions and Focus: Improving Aboriginal problems strategies patient journeys Identifying the barriers, enablers, Considering application of findings Modifying, adapting and testing gaps and strategies to care and mapping tools mapping tools for quality improvement and education MTWT reports MTWT reports Knowledge exchange and translation City Hospital Care for Country Stage 2: Patient Journey Mapping Aboriginal People—Project Report Tools MTWT reports City Hospital Care for Country Stage 3: Improving Aboriginal Aboriginal People—Community Patient Journeys—Study Report Summary Stage 3: Improving Aboriginal Study 1—Report on Admissions Patient Journeys—Workbook and Costs (Version 1) Study 2—Staff Perspectives on Stage 3: Improving Aboriginal Care for Country Aboriginal Patients Patient Journeys—Case Studies Study 3—The Experiences of • Renal Patients and their Carers • CardiacStudy 4—Complex CountryAboriginal Patient Journeys • Maternity • Rural and Remote Sites • City SitesDiagram 1: The three stages, focus and outcomes of the Managing Two Worlds Together project

viAcknowledgmentsThe authors would like to acknowledge the following Brita Pekarsky, Sharon Perkins, Daphne Perry, Pampeople who were involved in, or assisted with the Pratt, Mark Ramage, Christine Russell, Bronwyndevelopment of the tools and these case studies: Ryan, Kym Thomas, Jeff Tinsley, Cheryl Wilden, Eileen Willis, Jacene Wiseman, Sarah Wyatt andHugh Auckram, Alex Brown, Sarah Brown, Lisa Chris Zeitz.Catt, Carol Cooper, Wendy Corkhill, Charlotte deCrespigny, Karen Dixon, Judith Dwyer, Toni East, We would also like to acknowledge the editorialJoanne Else, Kylie Herman, Liz Izquierdo, Rosie King, assistance of Jane Yule and Cathy Edmonds, theMonica Lawrence, Gay Martin, Lee Martinez, Sonia design work of Rachel Tortorella at Inprint Design,Mazzone, Laney Mackean, Tamara Mackean, Paula and the Lowitja Institute CRC for providing ongoingMedway, Debra Miller, Jo Newham, Kim O’Donnell, support for this study and publishing its outcomes.Abbreviations and TermsALO Aboriginal Liaison Officer PATS Patient Assistance Transport/TravelAPPO Aboriginal Patient Pathway Officer Scheme – South Australia/NorthernED Emergency Department TerritoryGP General PractitionerIAPJ Improving Aboriginal Patient Journeys PJM Patient Journey MappingMTWT Managing Two Worlds TogetherOPD Outpatients Department RFDS Royal Flying Doctor Service TQEH The Queen Elizabeth HospitalTerminology End of life – The point in a person’s life where doctors identify that a person’s health isThe use of the terms ‘Aboriginal’, ‘Aboriginal and deteriorating and they don’t have long to live, andTorres Strait Islander’, ‘Indigenous’ and ‘Elder’ they move to a conservative health care pathway.reflect the preference of the people with whom weworked. Key stakeholders – People who are impacted by, or may affect, the patient journey and the mappingAboriginal Patient Pathway Officer or APPO – exercise.A patient coordination role funded through theCouncil of Australian Governments; most of these Patient – We have used the word ‘patient’ topositions are no longer funded. identify the person undergoing a health care journey. In some services other terms may beCase study – The use of the term ‘case study’ used such as ‘client’. At all times we recogniserefers to specific problem-solving activities that ‘patients’ are individual people with uniqueundertaken by participating health staff to better personal, family and/or cultural needs and priorities.understand and improve care for their patients. Wealso recognise individual patients as ‘people’ rather Patient journey – The health care journey asthan ‘cases’. experienced and perceived by a person, the family and staff.

1About the City Sites Case StudiesThis report on City Sites Case Studies is The purpose of these case studies is to:complemented by reports on four others – dealingwith Renal, Cardiac, Maternity, and Rural and • provide examples of how the MTWT patientRemote Sites – published as part of the Improving journey mapping tools can be adapted andAboriginal Patient Journeys study, Stage 3 of the used in city health care settings for qualityManaging Two Worlds Together project. improvement and educationFour case studies from city sites are presented in • identify communication, coordination andthis report: collaboration gaps and strategies• Case Study A: Supporting Patients in a • provide hospital-based and primary health care Metropolitan Hospital examples of complex patient journeys.• Case Study B: Using the Tools across Case Study A follows a similar format as described Disciplines in the IAPJ Workbook and in Diagram 2. The other case studies provide an overview of what occurred.• Case Study C: Using the Tools in an These activities are either works in progress, or part Emergency Department of larger projects where the case study itself will be reported in full by the participants. This report• Case Study D: Adapting the Tools for a Youth discusses the development and use of the tools, Health Assessment Tool. rather than the completed findings of each patient journey.All four describe the ways in which city-basedstaff adapted and used the MTWT patient Key identifying factors in each patient journey havejourney mapping tools for use with Aboriginal been omitted or changed to protect the privacypatients in Adelaide. Aboriginal patients residing of people and their families. Ethics approval forin Adelaide, as well as rural and remote Aboriginal the study was provided by Flinders University, thepeople visiting Adelaide and using health care Aboriginal Health Research and Ethics Committee,services(hospital and primary health care), were The Queen Elizabeth Hospital Human Researchconsidered. Ethics Committee, the Central Australian Human Research Ethics Committee, and MenziesCase Studies A and B are based at the Queen School of Health Research. Required governanceElizabeth Hospital and on the work of an Aboriginal arrangements (Site Specific Assessments) werePatient Pathway Officer (APPO) and a vascular also completed with each SA Health site involved.nurse practitioner in quality improvement for patientcare. Case Study C describes how an emergency Health professionals are invited to use the tools innurse practitioner at the Lyell McEwin Hospital used their own setting, and to adapt and adopt them bythe tools to highlight important aspects of patient- adding columns or rows to focus on specific issuesfocused care, and Case Study D describes how the and concerns. Information on how to use the toolstools were adapted and used with a youth health is available in the Stage 3 Improving Aboriginalaudit tool. Patient Journeys—Workbook. The Workbook, Study Report and the four other Case Studies are available at: www.lowitja.org.au/lowitja-publishing.

2Contact detailsFor further information on the Improving Aboriginal Patient Journeys study, contact Dr Janet Kelly, IAPJStudy Leader at E: [email protected] or T: +61 8 8201 7765.To discuss case study details with the participants involved, please contact them directly:• Case Study A: Natalie McCabe, formerly Aboriginal Patient Pathway Officer, at E: [email protected] Elizabeth Sloggett, formerly Manager, The Queen Elizabeth Hospital, at E: Elizabeth.Sloggett@health. sa.gov.au• Case Study B: Wendy McInnes, Vascular Nurse Practitioner, The Queen Elizabeth Hospital, at E: [email protected]• Case Study C: Michael Kirkbride, Emergency Nurse Practitioner Emergency Department, Lyell McEwin Hospital, at E: [email protected]• Case Study D: Amy Graham, Aboriginal Clinical Health Worker and researcher, Watto Purrunna Aboriginal Primary Health Care, at E: [email protected] Damian Rigney, Aboriginal Clinical Health Worker and researcher, Watto Purrunna Aboriginal Primary Health Care, at E: [email protected] Dr Annapurna Nori, Public Health Physician, Watto Purrunna Aboriginal Health Service, at E: [email protected].

3The Patient Journey Mapping ProcessBy the end of the study the process of mapping Each step involves a number of tasks that wereAboriginal patient journeys consists of three main developed throughout the project by pulling togethersteps: the experiences of staff participants involved in testing and using the Aboriginal PJM tools. Diagram• Step 1: Preparing to map the patient journey 2 (below) provides an overview of these tasks.• Step 2: Using the tools It is important to note that in this and other Case Studies not all of the tasks described here are carried• Step 3: Taking action on the findings out fully in every case study. This is because the case study activities occurred before the final version of the tools and tasks were developed. Step 2: Using the tools Focus: How to map and analyse a patient journey Data gatheringStep 1: Preparing to map the Task 2.1: Providing a narrative account of the journeypatient journey (telling the story) Task 2.2: Providing a visual map of the actual journey across locationsFocus: How to prepare adequately prior to Task 2.3: Recognising the whole person experiencing themapping patient journeys patient journeyConsiderations Task 2.4: Considering the underlying factors that affect access and quality of careTask 1.1: Planning for mapping – who,what, when, where, why and how Task 2.5: Bringing together multiple perspectives in chronological mappingTask 1.2: Guiding principles forrespectful engagement and Step 1 Step 2 Task 2.6: Additional considerationsknowledge sharing for this patient journey mapping Analysis Task 2.7: Comparing this journey to particular standards of care and procedures Task 2.8: Identifying key findings Step 3 Task 2.9: Reflecting on what was learned about patient journeys and the mapping processStep 3: Focus: How to share findings and take action towards improving practicesTaking action and policieson the findings Knowledge translation Task 3.1: Deciding how best to share the findings, with whom, and in what format Planning and taking action Task 3.2: Identifying actions at the personal and professional service and systems levels to improve patient care and the coordination of journeysDiagram 2: The process of using the Aboriginal PJM tools – an overview

4Case Study A: Supporting Patients in aMetropolitan HospitalAuthors: Natalie McCabe and Janet KellyWho was involved in the • highlight the important role of supportingmapping? Aboriginal patients and coordinating Aboriginal patient journeysNatalie McCabe worked as an Aboriginal PatientPathway Officer at the Flinders Medical Centre and • identify the gaps, timing and effectiveness ofThe Queen Elizabeth Hospital (TQEH). She became discharge planning.interested in mapping patient journeys as a way torecord her work and began mapping journeys at Task 1.2: Guiding principles for respectfulTQEH with the support of her manager. Natalie has engagement and knowledge sharingworked in a wide range of Aboriginal community-controlled and mainstream health services in South This case study was conducted retrospectivelyAustralia and the Northern Territory. using case notes; however, Natalie was very mindful of engaging respectfully with patients,The focus of this case study their families and staff, and of providing a range of viewpoints. During follow-up appointments theThis case study describes how an APPO patient was made aware of plans to review patientadapted and used the tools to record the (often journeys as a hospital quality improvement process.unrecognised) levels of coordination and support The patient provided feedback that was used toshe provided for Aboriginal patients. It also includes present the patient’s perspective in Tables 1 and 2.an emphasis on discharge planning, which the Information about the MTWT Stage 2 project washospital was focusing on improving at the time. provided as part of the informed consent process and Natalie took care to de-identify specific aspectsStep 1: Preparing to map the of patient journeys if they were discussed outsidepatient journey the hospital setting.Task 1.1: Planning for mapping – who, In the process of writing this case study:what, when, where, why and how • Natalie and Janet met to discuss the tools andNatalie was involved in supporting a young how they could be adaptedwoman who came to TQEH for assessment andtreatment. This young woman lived interstate and • Natalie used case notes, emails and her dailyhad significant personal, social, family and cultural log book to map the patient journey and her roleconcerns. Natalie determined that the aim of within itmapping this journey was to: • Natalie and Janet met to discuss where exactly• present the patient’s perspective of some aspects could be placed within the tools. hospitalisation Natalie discussed the findings with her manager,• identify the different staff involved in in-hospital particularly those relating to discharge planning. care of one patient These findings were taken to management meetings for action.

5Step 2: Using the tools social, financial and cultural needs. Her surgery was delayed and much support was needed to preventTask 2.1: Providing a narrative account of self-discharge. Although rapid discharge followingthe journey (telling the story) surgery was planned, a communication breakdown between staff prevented this from occurring. OnceA brief and modified description is given to maintain discharged, the woman did not wish to return forconfidentiality of the patient. her Outpatients Department (OPD) appointment and specialised X-ray. The APPO and the woman’sA young woman was flown to Adelaide for health local Aboriginal Health Worker arranged a daycare and treatment following a violent incident. trip with increased support for her follow-upShe cares for a family member and wished to appointment, which she did attend.return home as soon as possible. She was veryfearful of being in a city hospital alone because Task 2.2: Providing a visual map of theprevious family members who had gone to city actual journey across locationshospitals had died there. Specific strategies andcoordination were required to meet her complex This visual map highlights the repeated nature of this patient journey. 1 week Home in Delayed surgery, delayed City remote discharge, delayed return home hospitalcommunity City hospital OPDDid not attend OPDAppointment rebooked Rebooked, with Royal Flying Doctor Service supports in place Commercial Flight 1 day Leg end Case Study A – Figure 1: Visual mapping

6Task 2.3: Recognising the whole person experiencing the patient journeyNatalie modified Table 1 to record the woman’s other aspects of health.Case Study A – Table 1: Dimensions of healthDimension of Situationhealth Local community City/regional hospitalSocial and emotionalwellbeing Young woman who usually lives interstate Really fearful of leaving her community and with a family member for whom she is a being alone in the city – scared of extendedFamily and carer, and in close proximity to extended admissions and not being able to returncommunity family homecommitments The local Aboriginal health service noted Concerned about her family member andPersonal, spiritual that she does not usually engage with health who is looking after themand cultural services, has a history of social issuesconsiderations including alcohol misuse, family breakdown, Concerned to be leaving family due toPhysical and and domestic violence with past emergency recent deaths of family members, includingbiological admissions to the local hospital in hospitals Usually well, but involved in a violent incident Face injury, with speech preservedTask 2.4: Considering the underlying factors affecting access and quality of careNatalie expanded and adapted Table 2 to include the issues and details about the actions taken, particularlyregarding cultural safety. This table enabled Natalie and her manager to demonstrate often unrecognisedpatient perspectives and needs and the complex support work that Aboriginal staff provide.Case Study A – Table 2: Underlying factorsUnderlying Impact of location and accessfactor Issues Details and action takenRural and RFDS flight to Adelaide –remote/city patient is concerned about The local rural hospital ALO provided intensive support to seek flying out patient consent for the trip; the patient only agreed after being Patient transfer back to airport advised there was an ALO who could support her on arrival Outpatient follow-up but patient Nursing Specialist identified patient required staff support while did not attend travelling to airport – APPO arranged Corporate Shuttle and assured staff this would be culturally appropriate Follow-up appointment APPO arranged with the rural health centre that they be informed of patient travel times and arrival so that they could ensure Corporate Shuttle was booked, but patient did not attend due to overnight travel APPO contacted health centre to discuss reason, and arranged for follow-up rescheduling; agreed to meet the patient on arrival and supported her to attend OPD appointment and liaise with staff to negotiate completion of treatment to avoid returning for another planned OPD appointment Patient was much happier with additional support and arrangements that OPD appointment was fly in/fly out on the same day resulting in no overnight absence from family

7Case Study A – Table 2 cont...Underlying Impact of location and accessfactorImpact of illness Issues Details and action takenor injury Alleged assault Staff concerned patient will return to harmful environment andLanguage and Facture of the mandible seek APPO input to discuss with patientcommunication Alcohol dependency Surgery delayed APPO makes necessary links with rural health and support servicesFinancial for ongoing support, to enable a safe patient discharge planresources Follow-up care English is main language Jaw movement was impaired but speech preserved Anxiety is creating barriers for communication Placed on alcohol withdrawal support for the first 24 hours of admission, did not require further treatment Low income recipient Emergency admission with Patient anxious to leave hospital, willing to self-discharge when domestic violence factors informed that surgery would be delayed Smoker Very anxious and asked that staff arrange return trip home immediately; APPO support to remain in hospital (ALO on leave) Banking concerns Not willing to wait for recovery after surgery – APPO negotiates with staff that patient can return home immediately – writes up discharge plans Can use English for everyday conversation and to obtain consent Patient expressing fear through anger and requires APPO support to discourage self-discharge and reassure patient of discharge plans to support return home as soon as possible APPO provides brokerage supports to staff and specialist team to ensure culturally appropriate inpatient care and discharge planning is provided by explaining history, current concerns and informing staff of agreements/arrangements with patient and rural health carers Low income and emergency flight to Adelaide results in patient travelling without any clothing, shoes, identification, bank cards or cash Patient unable to have TV due to no money – APPO negotiates with Social Work to connect TV for three days to help provide patient with some comfort while waiting for surgery APPO arranges clothing and shoes, toiletries and writing material Patient is a smoker and has no funds to purchase cigarettes, which adds to her anxiety and willingness to self-discharge Patient declines Quit patches, and resolves issue by obtaining smokes from other people in smoking areas Patient requests short-term leave to go to the bank, but this request declined by specialist staff due to concerns she will self-discharge APPO negotiates to take patient but ward concerned patient will not return Patient concerned that she needs to withdraw her Centrelink payment from her bank before it can be withdrawn, leaving no food money for the family member she cares for, and herself APPO arranges dial out phone access so the patient can liaise with Centrelink support workers to modify payment destination

8Case Study A – Table 2 cont...Underlying Impact of location and accessfactor Details and action taken Issues Travel requirements According to the policy of her local PATS office the patient is required to pay her own way home and then claim aCultural safety City hospital is foreign and reimbursement, but the patient has no financial resources scary APPO seeks support from local Aboriginal Health Centre to obtain pre-approval from PATS for patient flights – not successful due to the fact that the patient’s flight will be on weekend and PATS pre-approval requires discharge sign-off with a date of flight Discharge date cannot be given by Ward until after surgery and assessed in recovery APPO liaises with Rural Liaison and Specialist Staff who approve for TQEH to arrange flight and TQEH will pay and then seek reimbursement from PATS Patient has never been to a city hospital before Many family members have died in Adelaide hospitals and it is considered a one-way trip She has no known family living in Adelaide and feels isolated and alone, as she usually spends the majority of her time with family members On admission staff assumed the patient was accompanied by a family member, but she travelled alone Nurse Specialist consults with the patient soon after arrival and recognises need for cultural support – makes referrals to ALO and then APPO ALO on leave during patient admission – patient was expecting ALO support; staff contacted APPO for ALO support APPO liaised with home community hospital for background information relating to engagement, fears and follow-up care (local rural hospital unable to provide follow-up care) APPO liaised with local Aboriginal Health Service to arrange referrals and ongoing outreach support to ensure patient continuity of care and assist with return OPD appointments in AdelaideTask 2.5: Bringing together multiple incorporated an emphasis on discharge planningperspectives in chronological mapping by adding it to row and column headings. Natalie also wished to highlight the many different peopleNatalie worked on bringing together the multiple and services within the hospital that were involvedperspectives of the woman and various staff in this young woman’s care, and so listed them andmembers. At the time of this mapping, the hospital identified their involvement by ticking the placeswas emphasising the importance of early discharge within the journey that they worked with or for theplanning, and so Natalie and her manager patient.

Case Study A – Table 3 (Part a): Multiple perspectives – first diagnosis to surgeryPerspective Patient Trip to Admission Care Discharge/ Referrals OPD/ Trip home Follow-up history city surgery/ transfer in-hospital follow-ups Admitted to treatment + external Arrange SpecialistPatient’s Assault RFDS ward to await Plastic surgery Possible self- OPD patient RFDS flight follow-upjourney surgery discharge APPO did not attend direct to X-ray not Alcohol No family Fearful of surgery Local home available travel with Mother calls Surgery delayed Flight to be Social Work Aboriginal near home Domestic patient throughout + booked after Health Service Immediate – needs to violence admission – increased anxiety surgery and Centrelink aware of return home return to city Away from encourages = recovery missed flight after surgery family and admission but anger and Aboriginal but not aware Ward staff Patient home but argues communication PATS won’t Health of issues agree to book prefers to Fear of dying with patient barriers with staff pay upfront Centre (home Rearranged flight as soon engage with in city hospital (reason costs community) with APPO as possible local health Concerned unknown) support service forFamily Family about her Homesick ongoingjourney breakdown brother’s care Delays to trip Patient No family follow-up Cultural home delayed by travel with carePatient concerns = one day due patientpriorities, low trust No money for to staff not for OPDconcerns TV, clothes reading back appointmentcommitments smokes etc. through notes/ Centrelink handing over Prefers local concerns arrangements follow-up in Patient own state, anxious but but is booked relieved to for OPD in know flight Adelaide confirmed 9

Case Study A – Table 3 (Part a) cont...Perspective Patient Trip to Admission Care Discharge/ Referrals OPD/ Trip home Follow-up 10 history city surgery/ transfer in-hospital follow-ups APPO treatment + external provides Discharge APPO referralDischarge cultural planned for APPO referral to localplanning brokerage Saturday or to local Aboriginal between Sunday – but Aboriginal Health patient, did not occur Health Centre for specialist as ward staff Centre for patient travel staff and did not read patient travel arrangements ward staff notes or share arrangements to attend to ensure information and ongoing OPD patient at handovers care appointment needs and regarding concerns are flight considered arrangements – waited for ALO/APPO/ Rural Liaison to book on MondayRural ALO   APPO On leave  ALO TQEH      Ward staff   SpecialistNurseRegistrarRural LiaisonNurse

Case Study A – Table 3 (Part a) cont...Perspective Patient Trip to Admission Care Discharge/ Referrals OPD/ Trip home Follow-up history city surgery/ transfer in-hospital follow-ups treatment + external   Social Work  Collaboration Referrals  Information  between ward by Nursing Different sharing/useWard Clerk and specialist Specialist to  PATS of networks  staff, APPO and APPO requirements betweenOPD staff Rural Liaison  between interstate Liaison Nurse states Health/Volunteers between Alerts by Aboriginal Ward, APPO + local local health Health andRural health Nursing health providers provider APPOinterstate Specialist and + APPO APPO coordinationTransport –busWhat isworking wellGaps/ No escort Delays in Staffdisconnects surgery communication – No money poor handover of information No ALO between shifts Centrelink access and arrangements 11

12Task 2.6: Additional considerations for Gaps and disconnects:this patient journey mapping • patient arrived without identification, money orNot required for this case study. clothingTask 2.7: Comparing this journey • lack of escort led to anxiety for patient; havingto particular standards of care and no money limited her ability to call family forprocedures supportThis case study was compared to the discharge • Ward staff not aware that the ALO was onpolicy of the hospital and it was found that there leave – no notification system hospital wide towere key communication and planning gaps alert wards and no arrangements in place tooccurring in practice. These included discharge automatically divert referral to APPOplanning not being discussed by all staff as early inthe patient’s hospital stay as the policy suggested, • delays in getting through to Centrelink to speakand communication breakdown between staff to a Client Service Officer or ALO createdmembers when a plan was put in place. financial anxiety for patientTask 2.8: Identifying key findings • delays in surgery increased patient desire to self-dischargeNatalie and her manager summarised the keyfindings. • lack of information sharing at handover led to delay in discharge for patientThings that are working well: • PATS required patient to pay upfront for return• liaison between Ward, Nursing Specialist and travel – problematic for emergency admission APPO ensured culturally appropriate support patients without money/identification.• collaboration between Ward and Specialist staff Five main things regarding discharge planning with APPO and Rural Liaison, and between that need to be discussed with management APPO and local health providers, ensured culturally appropriate transfer planning 1. When the ALO is on leave, alternative arrangements are required.• referrals by Nursing Specialist to APPO prevented self-discharge and led to future 2. Need for identification of the main person engagement with local health service coordinating discharge planning.• alerts by local health provider ensured APPO 3. Lack of communication between different shifts could coordinate OPD care with travel and of ward staff delayed discharge. ongoing care, which reduced stress for the patient and led to appropriate health outcomes 4. Significant time spent arranging discharge due relating to this admission to multiple external agencies involved.• information sharing and use of networks 5. Significant PATS/travel arrangements. between the local Aboriginal Health Service and the city hospital APPO ensured ongoing support Task 2.9: Reflecting on what was learned for this patient and enabled her to return for her about patient journeys and the mapping follow-up appointment process• volunteers provided sleepware and thongs for Natalie and her manager focused their reflections admission. on the three tables that were used. In Table 1 it made more sense to combine social, family, cultural and emotional factors as they are often interchangeable (grief and loss from recent funerals, for example).

13Table 2 provided a way to highlight the significant Task 3.2: Identifying actions at personal,(and often hidden) work that Natalie and the professional, local service and systemsAboriginal Liaison Officers do to assist in improving levels to improve patient care andaccess and quality of care, particularly in relation coordination of journeysto improving the patient’s perception of culturaland personal safety and wellbeing. We were all Natalie found the mapping to be an effectivesurprised by how significant this table became in way to conduct reflective practice personallythe final mapping. and professionally and made a commitment to keep using the tools. She has now moved intoIn Table 3 both Natalie and her manager wished a counselling role and has adapted the tools toto focus on discharge planning within a patient assist with mapping student journeys through thejourney, about when it begins, by whom, and how education system to identify the underlying factorseffective the communication between different impacting on successful study pathways.staff and areas of the hospital are. Dischargeplanning was added as both a row and a column. Natalie’s manager used the mapping/cases studyIn addition, all the staff involved in the woman’s to argue for improvements in discharge planningcare were listed to highlight the myriad of people and staff communication, and also to lobby forwho are involved in patient care within a hospital, TQEH to maintain the APPO role beyond theand the need for effective communication and current nationally funded contract. This latter actioncoordination across all of these. was successful, and Natalie was one of the few APPOs to be re-employed in Adelaide and SouthStep 3: Taking action on the Australia following the end of the initial fundingfindings round.Task 3.1: Deciding how best to share thefindings, with whom, and in what formatNatalie and her manager identified that this casestudy could be used in multiple ways for multipleaudiences. It could be used for staff educationabout patient perspectives and the implications ofcommunication breakdown, it could be taken tomanagement-level meetings to assist in decisionmaking about continuation of positions, andit had a role in patient satisfaction and qualityimprovement strategies and discussions.

14Case Study B: Using the Tools acrossDisciplinesAuthors: Natalie McCabe, Wendy McInnes and Janet KellyWho was involved in the Step 1: Preparing to map themapping? patient journeyNatalie McCabe worked as an Aboriginal Patient Task 1.1: Planning for mapping – who,Pathway Officer at the Flinders Medical Centre and what, when, where, why and howThe Queen Elizabeth Hospital (TQEH). She becameinterested in mapping patient journeys as a way to Natalie and her manager identified different wardsrecord her work and began mapping journeys at and units that she could approach to explore theTQEH with the support of her manager. Natalie has benefits of using the mapping tools more widely.worked in a wide range of Aboriginal community- Wendy McInnes was interested in being involvedcontrolled and mainstream health services in South and met with Natalie and Janet. Together weAustralia and the Northern Territory. discussed what kind of patient journeys could be mapped, what currently happens for patients, andWendy McInnes works as a Vascular Nurse where and how services are provided. We invitedPractitioner at The Queen Elizabeth Hospital. She Wendy to reflect on ‘what works’ and on the currentworks with patients who experience a range of health challenges in patient care and patient journeys. Thisconcerns including fistulas, diabetic complications, enabled us to consider the format that the toolswound care and amputations. Wendy became may need to take to record entire patient journeys.involved in the study when Natalie approached her to Wendy then identified some recent patients whosemap vascular patient journeys together. journeys she would like to map.The focus of this case study Task 1.2: Guiding principles for respectful engagement and knowledge sharingThis case study discusses how knowledge about,and experience in, adapting and using the tools Both Natalie and Wendy agreed that they would likewas transferred from one staff member to another, to speak to the patients and invite their involvementwith an emphasis on working together across in mapping their journeys for continuous qualitydisciplines and units for quality improvement and improvement. These patients had already returnedcontinuity of care post-discharge. Due to the home to rural and remote locations but werefocus of the case study being on this process of contactable by phone or during follow-up visits.knowledge exchange between staff, rather thanthe patient journey itself, only some of the mapping Step 2: Using the toolstasks are discussed. Wendy and Natalie contacted a young man who had a recent journey and sought his agreement; although he did not wish to be directly involved, he was happy to answer any questions they had. Wendy and Natalie used the case notes to begin mapping the patient journey, adapting the underlying factors and multiple perspectives tables as required. Steps 2.1–2.7 are not shown as they would too clearly identify the patient.

15Task 2.8: Identifying key findings Step 3: Taking action on the findingsDuring the process of mapping, Wendydiscovered that the young man had not received Collectively and separately, Natalie and Wendy tookthe rehabilitation that she thought was arranged multiple actions as a result of mapping this patientin a nearby regional town. A breakdown in journey:communication meant that the young man hadmissed being followed up. • Wendy spoke to the vascular unit about improved processes for follow-up care postTask 2.9: Reflecting on what was learned discharge, and used this case study for theabout patient journeys and the mapping quality and safety audit later in the year; her timeprocess doing the mapping was recorded as part of her continuing professional developmentBoth Natalie and Wendy found that it was easierdoing this work together than alone. Pooling skills • Natalie and Wendy used this case studyof the vascular nurse practitioner and Aboriginal (with the patient’s permission) as a basis for asupport person enabled the different perspectives presentation at the Dignity in Care conferenceand aspects to be understood more easily. Nataliehad found it difficult to know what was significant • Natalie planned to continue mapping patientor not in the vascular journey without the specialist journeys with different units – however, this didassistance, and Wendy found that Natalie identified not occur when she left the position.social and cultural aspects that she may haveoverlooked. One other action Natalie took was to design a single page diagram to explain the purpose,Natalie adapted the tools into an Excel spreadsheet, process and outcomes of mapping patient journeyswhich enabled her and Wendy to include more (Figure 1 below). This was shared with otherindepth information. hospital staff and with this study.Patient Journey (Visual mapping prepared by Natalie McCabe, The Queen Elizabeth Hospital)Case notes Continuous Quality Improvement reviewPatient journey Standards and mapping health care plans Discussion Improved patient Actions journey Changes Analysis of dataIdentify gaps, disconnects, best practiceCase Study B – Figure 1: Visual mapping – an explanation of the patient journey mapping purpose andprocess for city hospitals

16Case Study C: Using the Tools in anEmergency DepartmentAuthors: Michael Kirkbride and Janet KellyWho was involved in the mapping two different patient journeys – one thatmapping? worked well for the patient, the family and staff, and one that did not. Michael also wished to highlightMichael Kirkbride works as an Emergency the benefits for patients (particularly those for whomDepartment Nurse Practitioner at the Lyell McEwin English was a second language) who were eligibleHospital in the northern suburbs of Adelaide. Michael to see a nurse practitioner and prevent beinghas previously worked in rural and remote locations shuffled from one person to another in ED.within South Australia and has a strong interest inimproving quality care for Aboriginal people. He read Task 1.2: Guiding principles for respectfulabout the patient journey mapping in Stage 1 and engagement and knowledge sharingasked to become involved in Stage 3 of the project. Michael considered carefully which patientThe focus of this case study journeys he would like to map and contacted the patients involved to explain his intention and seekThis case study describes a patient journey permission to use their journey stories. He soughtthrough a city hospital Emergency Department (ED) to present the patients’ perspective and how theinvolving a nurse practitioner. It took place early in hospital could best meet their needs.Stage 3 while the tools were still being developedand so involves the three main tables and only Step 2: Using the toolssome of the tasks of the final version of the tools asdescribed in the Workbook. The prompt questions for the three tables were not yet developed. Through face-to-face meetingsStep 1: Preparing to map the and ongoing email discussions, Michael and Janetpatient journey discussed what belonged in each section of each table.Task 1.1: Planning for mapping – who,what, when, where, why and how Task 2.1: Providing a narrative account of the journey (telling the story)Michael had observed a number of interactionsbetween staff and patients where communication A young boy fell and sustained a nasty injury. Thebreakdown and misunderstandings occurred and boy and his grandmother lived a distance fromwas seeking ways to educate ED staff about the the hospital and did not have a car or ambulancecomplexity of patient journeys though hospital cover, and his grandmother called for a local generalsystems and health care, even in urban settings. practitioner (GP) locum to see him. The GP assessedHe also wished to counter some the negative his wound and dressed it, but gave minimal advice.perceptions that some staff held about Aboriginal The wound continued to cause problems for the boypeople, their behaviour, personal resources and and split open if he tried to do sport at school. Aftermotivations. We discussed the possibility of a few days his grandmother took him to the Lyell McEwin Hospital for assessment. They were quickly diverted to the nurse practitioner who introduced himself, asked the background story to the injury, assessed the wound and was able to provide/ coordinate appropriate treatment.

17Task 2.3: Recognising the whole person experiencing the patient journeyCase Study C – Table 1: Dimensions of healthDimension of health Situation This boy currently lives with his Grandmother in Adelaide in the northernSocial and emotional wellbeing suburbs and is from the Anangu Pitjantjatjara Yankunytjatjara LandsFamily and community English is not the first language of either the boy or his GrandmothercommitmentsPersonal, spiritual and cultural Young boy, no other physical illnessesconsiderationsPhysical/biologicalTask 2.4: Considering the underlying factors that affect access and quality of careThere were implications for the patient and family about their wider health journey, including the actions of alocum GP and ambulance service. An additional column was added to Table 2 to enable this to be included.Case Study C – Table 2: Underlying factorsUnderlying factor Impact of location and accessImpact of illness or Locum/GP – actions Emergency Departmentinjury AmbulanceLanguage andcommunication Unable to go to school or play sport Wound review, dressings, antibiotics, tetanus injectionFinancial resources Inappropriate treatment originally given – his wound actually required suturesCultural safety First language Pitjantjatjara Nurse practitioner speaks some Pitjantjatjara and enacts introduction and communication English is not the GP locum’s first language as per cultural norms No interpreter and effective communication difficult Cost of GP Getting home – nurse practitioner arranges Do not have ambulance cover a taxi rather than having to catch buses to home post treatment Was seem in their home, but some cultural/ Able to be diverted to nurse practitioner communication difficulties route reasonably quickly, which provided more personalised and responsive care

18Task 2.5: Bringing together multiple • did not have to repeat their story again andperspectives in chronological mapping again to each new practitionerIn Table 3 (see next page), Michael wished to • wrap-around services and comprehensive carehighlight that patient flow through ED involves able to be provided in a timely mannertravelling through multiple areas and seeing differentstaff members. Patients who meet the eligibility to • considerations regarding how they would getsee a nurse practitioner (based on the type and home – rather than discharge at the ED door.severity of illness) can bypass many of these areasand staff changes and receive a ‘wrap around’ Step 3: Taking action on theservice. This is particularly helpful in providing findingsculturally safe, timely and streamlined care. Michael intends to use these case studies toBenefits for the boy and his grandmother in seeing alert staff to specific patient needs, to improvea nurse practitioner: patient journeys through ED, and to improve communication and interactions between patients• able to be understood when speaking in their and staff in this city hospital. first language• able to make connection and relationship to one person

Case Study C – Table 3: Multiple perspectivesPerspective Presenting Triage Receptionist Waiting Area A ED multiple staff members Comments complaint nurse room nurse Transit T2 nursePatient’s Wound injury Assess Patient detailsjourney recorded Tell details Transfer to Accompanied Can they next areaFamily/carer by under stand Have I gotjourney Grandmother me? adequate How long to How many Will each person understand me? With they treat me and In pain and identification? wait? people do I my Grandmother respectfully?Patient unable to play Medicare card? need to see?and carer sportpriorities,concerns andcommitmentsHealth care Treat wound Effective triage Medicare card Care while Take patient to Ensure patient received needed care using existing healthpriorities “ details waiting next area care resources and structuresHow ED “ ““provides care The usual patient journey though ED involves meeting a series of nurses and doctors ingenerally ““ different sections of ED and repeating one’s story.Nurse The nurse practitioner is able to coordinate and provide the range of services needed with Nursepractitioner minimal other staff involvement, which enabled them to introduce themselves and take a practitioner iscare history as they can speak some Pitjantjatjara able to make ED journey Once the relationship has been established they were able to assess the wound and provide less confusing immediate wound care including suturing and prevention of infection, arrange follow-up appointment and provide taxi voucher for the boy and his grandmother’s return to home 19

20Case Study D: Adapting the Tools for aYouth Health Assessment ToolAuthors: Amy Graham, Damian Rigney and Annapurna NoriWho was involved in the Janet began reworking the multiple perspectivesmapping? table during the meeting, adapting columns and rows to fit the needs expressed. Table 1 showsDr Annapurna Nori has worked in Aboriginal health how this table had been adapted by the end of theirin the central, western and northern suburbs of first meeting; this table was then further adapted.Adelaide. Through the ‘Y Health – Staying Deadly’Community Based Translational Action Research This became the first draft and was adapted asProject at Watto Purrunna Aboriginal Health Service the project continued. Amy and Damian learned(AHS), Annapurna and the project team developed interview techniques with Annapurna and continuedan Aboriginal and Torres Strait Islander youth to adapt and develop the tool.assessment tool. Amy Graham and Damian Rigney,who are Aboriginal Health Workers based at Watto Task 1.2: Guiding principles for respectfulPurrunna (AHS), were involved in this youth project engagement and knowledge sharingas early career researchers. The Y Health – Staying Deadly project was basedThe focus of this case study on respectful engagement, confidentiality and knowledge sharing. The project predominantlyThis case study discusses the ability of the worked with young people, including those fromAboriginal patient journey mapping tools to be the Anangu Pitjantjatjara Yankunytjatjara Landsadapted for a city-based youth project involving the who were living in Adelaide each semester fordevelopment of youth assessment tools. high school education. The project considered the ethical implications in depth, and also the need for a responsive youth assessment tool.Step 1: Preparing to map thepatient journeyTask 1.1: Planning for mapping – who,what, when, where, why and howAnnapurna, Amy and Janet met (Damian joined theproject later) to discuss the different projects andhow they could share ideas, knowledge and tools.They discussed that Tables 1 and 2 may be moreuseful as prompt questions, but that the formatof Table 3 was really useful because it broughttogether the different perspectives, rather than justa single perspective.

Case Study D – Table 3: Multiple perspectives – youth projectWho What What was the What did Did you try What Details – Follow-up Who, what What got in happened – effect on you – you do – to get help happened $ really your wayYoung the trigger feelings/ why or advice – then Transport Mix up helped you and howperson’s consequences where, who Missed/kept with next and howjourney Trip home Rang mum from, how Support appointment appointment involved a Difficulty Spoke to Friends Support Worker Medicare paid Friends came Not wantingTimeline traumatic concentrating in friends Worker arranged GP Support Worker April 2013 with me to talk to tell othersStaff from event school Spoke to visit took me Difficultly to Support about itsupport Support Checked referral making next Workerservice Jan. 2013 March 2013 Worker list/options March 2013 March 2013 appointment(maybe ** came back She had trouble March 2013 Made Had to access ––interview ) from holidays with school and Made time appointment Medicare card/ and was not was very quiet to talk with GP number Flexibility – good School her usual self when/ how ** preferred relationship timetable between school – getting and support appointments at services suitable timesFamilyFriendsGeneralPracticeKPIs – idealpatientjourney 21

22Step 2: Using the tools Step 3: Taking action on the findingsThe youth team conducted six preliminaryinterviews to test the revised interview tool. The The youth team is intending to identify the journeytool was then refined and re-tested with four urban young people make in regards to their health inAboriginal youths. The team is now in the process order to ensure health care is as accessible asof refining the tool so that it is suitable for Anangu possible and meets their needs.youth (young people from Anangu PitjantjatjaraYankunytjatjara Lands). Amy and Damian identifiedthe need to balance dual roles (clinical andresearch), build confidence, understand and applyresearch ethics, and to be comfortable with askingquestions and knowing how to obtain informationfrom a participant.

23About the AuthorsJanet KellyStudy Leader, Improving Aboriginal PatientJourneys and Research Fellow, FlindersUniversity, and Research Fellow, School ofNursing, University of Adelaide and HeartFoundationNatalie McCabeAboriginal Patient Pathway Officer,The Queen Elizabeth HospitalWendy McInnesVascular Nurse Practitioner, The QueenElizabeth HospitalMichael KirkbrideEmergency Nurse Practitioner, EmergencyDepartment, Lyell McEwin HospitalAmy GrahamAboriginal Clinical Health Worker andResearcher, Watto Purrunna AboriginalPrimary Health CareDamian RigneyAboriginal Clinical Health Worker andResearcher, Watto Purrunna AboriginalPrimary Health CareAnnapurna NoriPublic Health Physician, Watto PurrunnaAboriginal Health Service

The Lowitja InstitutePO Box 650, Carlton SouthVic. 3053 AUSTRALIAT: +61 3 8341 5555F: +61 3 8341 5599E: [email protected]: www.lowitja.org.au