The role and potential of community based cancer care for Māori in Aotearoa/New Zealand : A thesis presented in partial fulfilment of the requirements for the degree of Doctor of Philosophy in Public Health at Massey University, Wellington, New Zealand

There are unacceptable ethnic differences in cancer survival in Aotearoa/New Zealand and quality of life differs between Māori and non-Māori at all stages of the cancer journey. Overseas studies have recognised that all the priorities for cancer services are affected by actions in primary care – reducing the risk of cancer, early detection and faster access to specialist treatment, improved support for patients living with cancer, and reducing inequalities. Additionally, the importance of strategic policy to direct practical and effective community-based cancer care has also been identified. Māori health provider organisations have been using a ‘Whānau Ora’ approach to provide primary health care services for over twenty years; however their contributions to cancer care have been largely invisible. This qualitative study explores the role and potential of community based cancer care for Māori as a means to addressing three study questions: What helps patients and whānau to access and receive cancer services? What is the role of primary care, which includes Māori health providers and mainstream providers, in facilitating access into and through cancer care services? Does current cancer control policy adequately address Māori needs? Using a case study approach, participants from four areas of cancer care were recruited within a Māori-centred, ethic of care framework, to explore the experiences of those who plan, manage and administer, deliver, and receive cancer care. The main source of data was in-depth semi-structured interviews. The key themes identified from this research are that: whānau hold critical and multiple roles across cancer care; there are gaps in supportive cancer care and information that is appropriate for Māori; ongoing relationships with a primary health care provider assist whānau to navigate their cancer journeys, with Māori health providers in particular, delivering wide ranging cancer care services, and linking patients with mainstream services; engaging successfully with the cancer care system currently requires an individual rather than collective approach; cultural safety education should extend across all cancer care services; communication between cancer care providers is improving and; cancer control policy in Aotearoa has a universal focus which does not adequately address Māori needs. The role of primary care is pivotal in Māori cancer care access, from prevention through to survival, and must be at the forefront of cancer policy. Acknowledgement of the different support and quality of life needs of Māori, including recognition of the interdependence of whānau as a strength, is required. Māori health providers have the potential to play a much greater role in cancer care and support, but sustainable funding models are required if Māori health providers are to continue, and expand on, the wide range of work that they undertake within their communities. The newly implemented Whānau Ora Initiatives may provide a vehicle for provision of sustainable community cancer care services

Exploring the impact of user involvement on health and social care services for cancer in the UK.

This report presents the findings from a study of cancer network partnership groups in the UK. Cancer network partnership groups are regional organisations set up to enable joint working between people affected by cancer and health professionals, with the aim of improving cancer care

Prostate Cancer Care Before and After Medicare Eligibility.

Prior studies suggest Medicare eligibility confers significant and substantial reductions in mortality and beneficial increases in health service utilization. We compared 13,882 patients diagnosed with prostate cancer at ages 63 to 64 years with 14,774 patients diagnosed at ages 65 to 66 (controls) in 2004 to 2007. Compared with controls, patients diagnosed with prostate cancer before Medicare eligibility had no statistically significant or meaningful differences in cancer stage, time to treatment, or type of treatment

Lung Cancer Care Before and After Medicare Eligibility.

Uninsured and underinsured near-elderly may not have timely investigation, diagnosis, or care of cancer. Prior studies suggest Medicare eligibility confers significant and substantial reductions in mortality and increases in health service utilization. We compared 2245 patients diagnosed with lung cancer at ages 64.5 to 65 years and 2512 patients aged 65 to 65.5 years, with 2492 patients aged 65.5 to 66 years (controls) in 2000 to 2005. Compared with controls, patients diagnosed with lung cancer before Medicare eligibility had no statistically significant differences in cancer stage, time to treatment, type of treatment, and survival. Study power was sufficient to exclude mortality reductions and health service utilization changes of the magnitude found in prior work, suggesting that typically, appropriate lung cancer care may be sought and delivered regardless of insurance status

Disclosure in lesbian, gay and bisexual cancer care: towards a salutogenic healthcare environment

open access articleBackground: The literature on sexual orientation disclosure is arguably one of the most developed in the field of lesbian, gay and bisexual (LGB) people in healthcare in English speaking countries however, relatively little research has been conducted into disclosure in cancer care. Studies have been mainly undertaken in primary care where distinct circumstances pertain and where the benefits of disclosure include obtaining appropriate health information, treatment advice and avoiding misdiagnosis. Methods: We conducted an in-depth qualitative study primarily recruiting patients through oncology care in hospital settings and through LGB community cancer support groups. Data were gathered through semi-structured interviews with 30 LGB patients with different cancer types. Results: Data were analysed using thematic analysis and interpreted and interrogated through salutogenesis theory which offers a useful lens through which to consider the health promoting effects of sexual orientation disclosure in cancer care. We present three themes as part of the analysis: Authenticity as a driver for disclosure in cancer care, Partners as a (potential) salutogenic resource and Creating safe, healing environments conducive to disclosure. The findings are reported and discussed in relation to three inter-related concepts from current salutogenesis theorising including a sense of coherence, generalised resistance resources and healing environments which can facilitate sexual orientation disclosure. Conclusion: Our findings enable a more nuanced approach to understanding disclosure in this context. This study contributes to the literature through its articulation of the salutogenic potential of disclosure (if responded to appropriately) for LGB patients as individuals, in relationship to their partners or carers and the role of creating a visible healing-oriented optimal environment to promote quality of life and recovery

Cancer Care Coordinators: Realising the Potential for Improving the Patient Journey

A person diagnosed with cancer can receive multiple treatments in a variety of different health care settings over extended periods of time1. During this time, they come into contact with multiple health care providers. For example, one recent UK study reported that cancer patients with a diagnosis of less than one year had met 28 doctors on average since their diagnosis2. Add to this the many other health professionals with whom the patient will come into contact during their illness and the complex maze that can characterise the patient’s cancer journey is obvious. The Optimising Cancer Care in Australia report3 published in 2003 by the peak cancer organisations in Australia concluded that there are many places for the person with cancer to get lost in the system, causing unnecessary morbidity and undue distress. The lack of an integrated care system for people with cancer was identified as a major failing of today’s health system3. A number of states in Australia have moved to appoint cancer care coordinators as a strategy to address such problems. In Queensland, cancer coordination positions have been established in a number of Health Service Districts in the Southern and Central Zone of the State, initially to scope patterns of care, referral pathways and to define a cancer coordination model for their regions that is consistent across the state, but able to meet the local needs of the population. To support its Cancer Clinical Service Framework, the NSW Health Department plans to recruit up to 50 cancer nurse coordinators. Cancer nurse coordinators in NSW will work through Lead Clinicians and Directors of Area Cancer Services to support oncology team meetings, develop care pathways and protocols, and provide a direct source of contact for patients and primary care physicians accessing cancer services4. In Victoria, a number of program coordinators and regional nurse coordinators have been introduced as part of the breast services enhancement program. Individual institutions have also established nurse coordinator roles for specific tumour streams. The cancer care coordinator role is a rapidly emerging one with a mandate to achieve some potentially far-reaching reforms to systems of care. To ensure these developments realise their potential, it is timely to consider the most effective ways to design and implement models of care coordination thatachieve the improvements being sought for the Australian cancer care system

The Cancer Care Workforce in Nebraska

Although cancer is the leading cause of death in Nebraska, the adequacy of Nebraska’s cancer care workforce to care for the cancer population is unknown. Therefore, we used workforce survey data for 2008-2012 from the Health Professions Tracking Service to analyze the cancer care workforce supply in Nebraska. We found that from 2008 to 2012, the cancer care workforce for adults outpaced cancer prevalence. We outline several policy options to improve Nebraska’s cancer care workforce capacity, and we consider the effect the Affordable Care Act may have on Nebraska’s cancer care workforcehttps://digitalcommons.unmc.edu/coph_policy_reports/1005/thumbnail.jp

Ethical hurdles in the prioritization of oncology care

With finite resources, healthcare payers must make difficult choices regarding spending and the ethical distribution of funds. Here, we describe some of the ethical issues surrounding inequity in healthcare in nine major European countries, using cancer care as an example. To identify relevant studies, we conducted a systematic literature search. The results of the literature review suggest that although prevention, access to early diagnosis, and radiotherapy are key factors associated with good outcomes in oncology, public and political attention often focusses on the availability of pharmacological treatments. In some countries this focus may divert funding towards cancer drugs, for example through specific cancer drugs funds, leading to reduced expenditure on other areas of cancer care, including prevention, and potentially on other diseases. In addition, as highly effective, expensive agents are developed, the use of value-based approaches may lead to unacceptable impacts on health budgets, leading to a potential need to re-evaluate current cost-effectiveness thresholds. We anticipate that the question of how to fund new therapies equitably will become even more challenging in the future, with the advent of expensive, innovative, breakthrough treatments in other therapeutic areas

Integration of Tobacco Treatment Services into Cancer Care at Stanford.

As part of a National Cancer Institute Moonshot P30 Supplement, the Stanford Cancer Center piloted and integrated tobacco treatment into cancer care. This quality improvement (QI) project reports on the process from initial pilot to adoption within 14 clinics. The Head and Neck Oncology Clinic was engaged first in January 2019 as a pilot site given staff receptivity, elevated smoking prevalence, and a high tobacco screening rate (95%) yet low levels of tobacco cessation treatment referrals (<10%) and patient engagement (<1% of smokers treated). To improve referrals and engagement, system changes included an automated "opt-out" referral process and provision of tobacco cessation treatment as a covered benefit with flexible delivery options that included phone and telemedicine. Screening rates increased to 99%, referrals to 100%, 74% of patients were reached by counselors, and 33% of those reached engaged in treatment. Patient-reported abstinence from all tobacco products at 6-month follow-up is 20%. In July 2019, two additional oncology clinics were added. In December 2019, less than one year from initiating the QI pilot, with demonstrated feasibility, acceptability, and efficacy, the tobacco treatment services were integrated into 14 clinics at Stanford Cancer Center