Closing the equity gap in access to early lung cancer diagnosis in Aotearoa: key informant perspectives and recommendations for action
Virginia Signal
1 * , Moira Smith 2 , Laird Cameron 3 4 , Shaun Costello 5 , Paul Dawkins 6 7 , Jonathan Koea 8 , Ross Lawrenson 9 , Catherine Smith 10 , Jason Gurney 2
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Abstract
Lung cancer survival is worse for Māori in Aotearoa New Zealand (NZ) than non-Māori. Our previous work identified that Māori are more likely to have their lung cancer diagnosed following an emergency presentation and face additional barriers in accessing secondary diagnostic services.
To inform improvements in lung cancer services, we aimed to collect key informant views on the extent to which these disparities were modifiable and how they might be modified by the healthcare system.
We interviewed 18 key informants from across the cancer sector, including clinicians, academics, policy experts, community workers and advocates. Analysis of collected views was conducted utilising a previously published conceptual framework to help organise and describe key issues and recommended actions.
Key themes emerging from the interviews included the value of lung cancer screening; the importance of health promotion; the need for an overhaul to primary care to improve access to clinical symptom recognition and early detection; the importance of improving geographic access to diagnostic/secondary services; the need to ensure the expansion of and improvements in a culturally-safe and competent workforce; the value and importance of good data to enable quality improvement; and the crucial importance of high-quality leadership and political buy-in.
Our interviews revealed some of the potential drivers of barriers to early detection experienced by Māori and the recommendations for action to address these barriers. The majority of these recommendations require system-level resourcing and change.
Keywords: early detection, health equity, health systems, lung cancer, Māori health, primary care, policy, race and ethnicity.
| WHAT GAP THIS FILLS |
| What is already known: Primary care professionals have a critical role in the early detection of cancer, including enabling timely investigations by secondary diagnostic services. Lung cancer survival is substantially worse for Māori than non-Māori in Aotearoa New Zealand (NZ), with Māori being more likely to have their lung cancer diagnosed following an emergency presentation and facing barriers in accessing secondary diagnostic services. |
| What this study adds: Key informants from the lung cancer sector agree that intervening to address the disparities in lung cancer survival in NZ is possible. This study argues for system-level resourcing and change, especially at the primary healthcare level, which will need high-quality leadership and political buy-in to drive change. |
Introduction
Lung cancer is a significant disease for Māori in Aotearoa New Zealand (NZ);1 it accounts for one-third (or over 300) of all Māori cancer deaths,2 approximately the same as those who die from the six next most common cancers combined.2 Furthermore, despite reductions in lung cancer incidence and mortality over previous decades, long-standing ethnic disparities in survival persist.2,3
While no one factor explains the extent and endurance of these survival disparities, access to early detection is likely to be an important driver. Recently, within a programme of research, our quantitative team found that just over half (54%) of Māori are diagnosed with lung cancer following an emergency presentation, vs 47% of Europeans (adj. odds ratio (OR): Māori 1.21, 95% confidence interval (CI) 1.13–1.30),4 which (in turn) is associated with substantially worse mortality outcomes than those diagnosed without emergency presentation.4 Māori with lung cancer are also less likely to live close to, and more likely to live a considerable distance away from, the location of their bronchoscopy than Europeans with lung cancer (100–200 km (adj. OR 1.46, 95% CI 1.26–1.69); 200 km (1.36, 95% CI 1.15–1.61)).5 These findings strongly suggest that, despite carrying the most significant lung cancer burden, Māori are underserved in terms of access to an early diagnosis.
This manuscript reports on the qualitative phase of our research, which gathered the perspectives of those with expert knowledge of the research area to gain an in-depth understanding of the underlying drivers and actions required to address our quantitative findings. We sought to answer the following research question: What are key informants’ views on the changes required to the health system to achieve equity in access to lung cancer diagnosis and survival for Māori?
Methods
Participant recruitment
Maximum variation purposive sampling6,7 was utilised to enable the collection of a broad range of perspectives from informants who had experience of clinical oncology practice, Māori health practice or research, and/or cancer-related policy. Potential participants were identified from the research team’s and advisors’ extensive networks and invited to participate by email (with an information sheet and consent form attached). Participants were also asked to suggest colleagues to approach (snowball sampling). To give participants time to consider their responses, a summary of the key findings from our team’s recent quantitative analysis and the interview questions were provided prior to the interview.
Key informant questions
Participants were asked the following questions about the disparities associated with (i) a diagnosis following emergency presentation,4 and (ii) access to diagnostic services.5
Data collection
Interviews (about 45 min each) were conducted virtually (Zoom) and recorded with permission. Consent was obtained at the start of an interview. Two responded to the questions by return email and provided written consent. Participants were offered the opportunity to review the written summary of their interview for accuracy before data analysis. Recruitment ceased when participants did not provide new information beyond that already gathered.
Data collection instrument
Interviews were guided by an interview schedule (Supplementary material, section S1), developed collaboratively by the research team, piloted with two participants (data included in analysis), and amended accordingly prior to the commencement of data collection.
Data analysis and management
Participants’ responses were collated in an Excel spreadsheet and data analysed thematically by MS and VS, utilising the conceptual framework from Mandelblatt et al. that describes barriers to accessing cancer services.8 The framework notes that inequities in access to cancer care may arise at several levels, and can stem from structural or provider barriers and factors that affect patient choice; it looks beyond the individual to consider the role the health system plays in access to cancer services. The framework has been used previously in NZ to examine access to cancer care for Māori.9,10 In this study, it was used to organise and describe the issues and recommended actions identified. The results were discussed with the wider project team and advisors, and recommendations developed.
Results
Participant characteristics
In total, 18 informants participated (16 interviews and two written responses); of whom 8 were Māori, 10 were female and from a range of healthcare professions, including community/iwi development (2), public health (2), respiratory (2) and primary care physicians (2), lung cancer nurse specialists (3), medical and radiation oncologists (3), specialist surgeons (1), cancer supportive care workers (1), and Māori health researchers (2).
The findings of this study are presented below, firstly describing participants’ views on the disparities and whether they can be modified, then using Mandelblatt’s framework. Participant quotes support the findings; additional data are in Supplementary material, section S2.
Participants’ views on the disparities
Participants were clear that the two disparities were inter-related and, together, indicate differential access to early lung cancer diagnoses. There was a consensus view that a diagnosis following emergency presentation is indicative of people not having effective contact with primary healthcare services, with participants describing emergency presentations as ‘a weather-vane, a canary in the coalmine’ (P11) of the state of access to primary care services or a ‘surrogate marker for a failure in the normal primary care processes of picking up lung cancer’ (P5). All participants thought that improving access to primary health care and secondary diagnostic services were key to improving survival.
All participants agreed that disparities in diagnosis following an emergency presentation could ‘absolutely’ (P4), ‘100%’ (P10, P13) be modified, although the disparities associated with access to diagnostic services could only be modified to a certain extent, largely owing to logistics, including people being unable to move from their residential location and equipment not being suitable to move closer to them.
Although outside the scope of this paper, to address the current survival disparities for Māori with lung cancer, participants emphasised the need for a continued focus on smokefree and cessation activities, alongside early detection and screening (‘it’s an ‘and–and’ approach’, (P11)).
Individual/whānau and community level
Participants raised several individual/whānau-level issues that affect people’s ability to access primary healthcare services, including challenges arising from work or whānau commitments that especially affect people without flexible work arrangements (shift-workers or those in lower-paying jobs); higher priorities of those living in poverty or on low incomes, where domestic commitments may take precedence over attending to health needs; and fear of the potential impacts of a cancer diagnosis on whānau members, such as income loss.
Differential ability to travel to primary care and diagnostic services was also discussed, with Māori being less likely to live close to health services and also less likely to have reliable transport options. People’s or whānau’s ability to pay for – or have the time to – travel was also thought to be an issue.
At the community level, the stigma associated with a disease arising from smoking, and attitudes such as fatalism, fear, or being whakama (shy) about symptoms, were raised as issues impacting timing of diagnosis. The health system’s current disease focus that ‘doesn’t facilitate health and wellbeing’ (P8), along with whānau not understanding the benefits of presenting early or the signs and symptoms to be concerned about, were also raised.
Individual- and community-level recommendations centred on health promotion, screening, and lung health rather than disease. Participants discussed the need for a comprehensive programme that incorporates awareness raising, including de-stigmatising smoking and facilitating awareness of signs and symptoms and benefits of early detection, paired with lung cancer screening, and wrapped within wellbeing messages and effective community engagement. One participant added that lung health or screening programmes should also include symptomatic management, ‘you need to do both as they impact each other’ (P7). Changing legislation on sick leave and raising employers’ awareness of the need to support workers to access health services were also mentioned.
While participants provided individual-, whānau-, and community-level recommendations, most responses were about ‘higher’ levels of influence, that is, primary care, secondary care, health system, and political levels.
Primary care service and system levels
Workforce issues were raised by most participants as a key primary healthcare provider-level factor underpinning the observed disparities. Discussions on workforce capacity, or rather lack of, were dominant, especially the shortage of rural and Māori GPs and nurses, along with the imminent retirement of a considerable proportion of GPs. Several participants spoke of workforce capacity and consistency issues in the context of whānau not seeing the same practitioner at each visit affecting trust-building and a practitioner’s ability to detect issues in their patients. Three participants described experiences of whānau visiting a GP but not being ‘heard’ as a common factor that impacted the timing of diagnosis and that affected ‘therapeutic trust with the patient, whānau, and family GP’ (P12).
Other primary care operational issues discussed included many practices not enrolling new patients or reducing opening hours, lengthy appointment wait times, and increased co-payment fees. A few participants also thought that an increased reliance on electronic management systems, such as those for booking appointments, was particularly problematic for Māori, as it assumes equitable access to mobile phones or the internet.
According to many participants, the overwhelming health need among Māori meant a reactive rather than primary care system. They said that GPs are typically responding to patients’ immediate issues and acute presentations, rather than undertaking screening and early detection activities to reduce disease incidence or impact.
Most participants thought that primary care systems-level factors drove most of the primary care provider issues they mentioned. For example, when explaining the reason for late-stage diagnoses, a participant said that it was ‘a failure of our primary care system at the moment, not your primary care providers, but the system … and the way they [the providers] find themselves working’ (P2). Another participant indicated that the finding that more Māori have an emergency presentation prior to lung cancer diagnosis ‘suggests that we are failing in primary care differentially’ (P5).
Current models of funding and provision of care also dominated participants’ responses. Several participants commented on NZ’s inflexible, Eurocentric funding, contracting, and care delivery models, which do not appropriately meet whānau needs and disadvantage Māori, ‘it all works out that it really disadvantages Māori, any Māori provider, or any with high Māori enrolments’ (P10). The lack of robust primary care data was another system-level issue several participants discussed, describing it as ‘a bit of a black hole’ (P13).
Recommendations for action focused on changing the way primary healthcare services were delivered. Suggestions included government-run clinics, with GPs as employees rather than shareholders; increasing numbers of GPs and/or other primary care practitioners; engaging meaningfully with iwi and communities to understand and ensure that their needs are being met; and for Māori/Iwi to have the time and space to design their own systems. A few participants suggested that the structure of the current system means that Māori providers are ‘colonised in their thinking in how health care is provided’ (P8). One participant also suggested shifting to a targeted and deliberate expansion of Māori health providers in areas of high need, ‘Iwi providers need to have a boost and be seen as a crucial resource in primary care’ (P6). Māori providing services for Māori to enable better healthcare engagement was also discussed. Several participants said that healthcare services need to be whānau-centred, community-led, culturally-safe, and of high quality regardless of whether they were delivered by Māori or non-Māori providers.
Participants also suggested that any community awareness raising about lung cancer should include allied health practitioners (such as pharmacists) and be coupled with a primary care awareness campaign. Further training of GPs was seen by many participants as a priority, to better enable a primary care system that is responsive to whānau needs, non-judgemental, and understanding of inequities. Finally, one participant indicated that ‘There needs to be a pathway for patients who are not being listened to’ (P9) at the primary care level.
Three participants’ recommendations centred on increasing the availability and connectivity of primary care data. Linking primary care registration with secondary care data was described as ‘a real must if we want to dig deeper’ (P4), carrying out retrospective audits of those diagnosed following an emergency presentation to track back to GP interactions ‘What did the GP do? Did the GP make a referral but get knocked back?’ (P13).
Secondary care service and system level
At the secondary care service level, the ‘wide disconnect’ (P12) between primary and secondary–tertiary care services was considered by many participants as a driver of the high proportion of emergency lung cancer diagnoses among Māori. Participants cited the siloed nature of NZ’s healthcare system, the poor communication between primary and secondary services, and inefficiencies and lack of timeliness in referral pathways to secondary diagnostics.
Workforce was also an issue for secondary services, with disciplines such as medical imaging and biopsy services facing constraints. Participants suggested finding alternative ways to deliver some of these services, but cautioned that existing internal and external disciplinary power structures may impede change and/or be resistant to expansion of existing scopes of operation. In addition, several participants were uncertain if the internationally trained health professionals who have recently entered the workforce to bolster capacity understood the NZ context, especially Māori health and equity.
System-level factors also contributed to the substantial travel barriers for Māori patients and whānau. The National Travel Allowance (NTA) was discussed as not working as well for Māori as it does for non-Māori, with participants describing it as ‘cumbersome’ (P8) and ‘a complete disconnect between Te Whatu Ora and the reality of what patients experience everyday’ (P3). A participant recalled patients being given early morning appointments for diagnostic services, having to find (and pay for) childcare, and then travel 3 h to hospital, all before their early appointment. Another participant cited restrictive diagnostic clinic opening hours (mainly, 9:00 am–5:00 pm, Monday–Friday), meaning that patients either needed to take time off work or could not make appointments. However, participants described service access as multi-factorial, whereby ‘it won’t be just the travel, but also getting themselves out of the house, understanding the reason for the test, engagement with their healthcare provider’ (P8).
To address these issues, most participants suggested fast-tracking processes, from primary health care directly to diagnostics services, such as respiratory/cough clinics. Several added that implementing such clinics would enable access to relevant and timely investigations, but cautioned that they must be coupled with the appropriate response from secondary care providers. Another option several participants suggested was to place services in locations on a needs basis rather than population basis. One participant discussed the multi-layered levels of engagement needed to make such changes, and the need for ‘a dedicated leader, champion, or organisation leading this’ (P12).
Several recommendations to address travel were proposed, including closer access to diagnostics, either by mobile diagnostic and screening services or telehealth if services could not be decentralised; marae-based diagnostic services; developing lung cancer screening using mobile CT; more thoughtful and targeted support to enable travel (revising the NTA’s access criteria, level of funding provided, and the reimbursement model); navigation/coordination roles commencing pre-diagnosis; and involving users in decisions about development of services. These solutions were described as multi-factorial, ‘Distance to travel is a proxy indicator, kind of like an umbrella for a range of barriers that need multiple kinds or forms of support’ (P11).
Institutional racism was raised by some participants as a key underlying factor driving the issues observed and as a barrier to change. One participant commented that ‘the health system needs to learn to not be judgmental and racist and that it has all the power’ (P9).
Political level
According to several participants, political level factors, such as NZ’s 3-year electoral cycle and lack of political will, were key underlying factors influencing access to early lung cancer diagnosis for Māori. Other political barriers included inertia and lack of leadership, competing demands on budget and resources, and politicisation of issues that most starkly affect Māori.
Strong community and clinical engagement were thought to be effective in countering the politicisation of an issue, as was generating political ‘buy-in’ so that politicians – especially those in the sitting Government – understand the causative issues and the potential solutions to address disparities, ‘Politicians need to understand the problem properly as well, political buy-in needs to be robust and [they need to be] able to defend it’ (P1).
Timeframes and monitoring of modifications
Participants’ views on the likely timeframes needed to achieve these health system modifications were mixed. While some participants thought that some actions, such as educational programmes, changes to the NTA, or enabling community-based diagnostic services, could be achieved in <5 years, others indicated longer timeframes to realise any benefits. One participant indicated a 4-year timeframe if ‘you make a really clear recommendation from the research and if picked up by a forward-thinking Minister of Health’ (P7). Other participants thought that seeing progress would take >5 years, given the longer term needed to change funding, systems, and organisational structures, and obtain national consistency in the lung cancer diagnostic pathway. One participant described the process as ‘like turning the Titanic around … there’s a lot of people involved, capacity building is difficult, and it’s going to be difficult to increase those numbers in primary care’ (P1). Additionally, participants thought that recent changes in NZ’s healthcare system challenged progress, with one participant stating, the ‘systems issues facing us at the moment, are not making it easier to find a new model that’s going to work, particularly for Māori’ (P4).
Participants’ views on ways of monitoring changes included obtaining on-going feedback from patients (including those who did not attend appointments) and communities about attendance barriers and enablers to identify progress. Monitoring the numbers of people attending emergency departments (EDs) by ethnicity and region was seen as vital. Monitoring emergency presentations alone was considered a crude performance indicator given it ‘doesn’t look at the pathway to ED and doesn’t record success’ (P4), and so, primary care should also be monitored for attendance and referrals, as should timeliness between referral and diagnosis, diagnostic attendance, distance travelled to diagnostics, and stage at diagnosis, all by ethnicity and region. Developing performance indicators and league tables for each hospital and/or region was considered important for on-going monitoring. Finally, improvements in access to early detection should mean a ‘stage shift’ or more people diagnosed with early-stage disease and result in improvements in treatment uptake, more people receiving curative intent treatment, and subsequent survival improvements across all ethnicities, particularly Māori. One participant described success as, ‘when whānau don’t present at ED, they go to primary healthcare, they are sent for testing, [they are] listened to and pathways begin early, and we have better outcomes’ (P9).
Discussion
Study participants were clear that ethnic disparities in diagnosis following emergency presentation and geographical access to diagnostic services were inter-related and together indicated failings in access to primary care and timely investigations by secondary services. Participants raised issues and potential solutions at the healthcare provider, healthcare systems, and political levels. Importantly, participants agreed that the disparities seen were amenable to intervention through system changes, cautioning that ‘leadership, determination, and resource’ are needed.
Improving survival equity through lung health promotion and organised screening was a key recommendation of our informants; NZ’s Breast Screening Programme sets a precedent, having led to similar survival prospects between Māori and non-Māori women diagnosed with cancer through the programme.11 The standardisation of diagnostic and treatment pathways, and continuous monitoring integral to an organised programme12 have huge potential to improve lung cancer outcomes for Māori. Such a programme should be designed to work well for Māori as a priority and include a focus on lung health rather than disease; work is underway in this regard.13,14
Primary care plays a key role in the early diagnosis of cancer, thus cancer outcomes.15–18 However, differential access to primary care is well-documented in NZ.4,15–17,19–24 In a recent editorial, Stokes and Goodyear-Smith25 emphasised that primary care access encompassed not only timeliness but also acceptability, affordability, and appropriateness. Our participants’ comments aligned with this view. Consistency and continuity of primary care are fundamental to quality health care and optimal cancer outcomes for patients,26 especially at diagnosis and in the year following.27 Ensuring a workforce that is culturally-safe and competent is critical to patients’ trust and use of healthcare systems.15,16 Many participants identified patient and whānau concerns about not being heard by primary care staff and a lack of trust in the system. Along with good communication, relationship-building and reciprocity are critical factors in early lung cancer diagnosis.28
Participants agreed that challenges in physically accessing diagnostic and secondary services are key drivers of the disparities discussed,29 with participants suggesting moving services closer to the patient where possible. Internationally, mobile and/or community-based lung screening and diagnostic services are being implemented, providing precedent for NZ.30,31 Aligned to previous research,15,32–35 participants also identified the need to better assist patients to reach services. Difficulties associated with travel1 and NZ’s NTA are well-documented.36,37 Despite recent funding increases,38 patients must still seek reimbursement rather than up-front funding for travel expenses, which particularly affects Māori.36,37
The importance of collecting and monitoring good-quality data to inform efforts to improve early detection of lung cancer cannot be under-estimated. Data are fundamental to ensuring continuous quality improvement across the diagnostic and treatment pathway,39 and for monitoring progress on achieving equitable outcomes for Māori.40
Our participants stressed that to address disparities for Māori, the system-level changes proposed require political prioritisation by the sitting government. Others in NZ and internationally agree that health system reform requires strong political leadership.22,41,42 Ongoing advocacy by cancer, lung health, and professional associations and academics to frame the issue in a way that will be attractive to politicians is needed. Such advocacy would be strengthened by economic analyses and personal stories.43
Strengths and limitations
This study provides depth to our team’s previous quantitative observations of lung cancer disparities among Māori in NZ. The range of experts working in lung cancer treatment and support services in NZ who participated in this study is a strength. While our thematic analysis highlights key patterns, space constraints limit the depth of exploration into nuanced differences, and some individual perspectives may not be fully specified. Nevertheless, our sampling approach allowed us to obtain a comprehensive understanding of the area of research, and considerable commonalities in participants’ perspectives were observed. Importantly, all agreed that lung cancer inequities need to be addressed. We did not collect the voices of people experiencing lung cancer, given they have been collected previously; notably, our participants’ observations resonate with those of patients.15 Our findings are limited to NZ and may be less relevant to Indigenous peoples in other countries, although similar issues are reported in the literature.44
Conclusions
For decades, lung cancer survival has been substantially worse for Māori than non-Māori. The consensus view of a broad range of expert sector key informants was that improving access to primary care and secondary diagnostic services were key to improving survival and could be achieved through changes in the wider health system.
Data availability
The transcripts used and/or analysed during the current study are not available for external purposes.
Conflicts of interest
The authors declare that they have no competing interests that might be perceived to influence the results and/or discussion reported in this paper.
Declaration of funding
Health Research Council of New Zealand (20/1066); Te Rōpū Rangahau Hauora A Eru Pōmare University of Otago, Wellington, New Zealand.
Acknowledgements
The authors thank the participants who gave their time and viewpoints freely, and Anna Davies who supported one interview.
Authors contributions
J. G., V. S. and M. S. designed the study. V. S. and M. S. collected and analysed the data. Drafting of the manuscript was led by V. S., M. S. and J. G. L. C., S. C., P. D., J. K., R. L. and C. S. all had significant input into review and redraft of the manuscript. All authors have read and approved the final manuscript and grant permission for the final version to be published.
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