How does it feel to be a problem? Patients' experiences of self-management support in New Zealand and Canada.

BACKGROUND: The impact of long-term conditions is the "healthcare equivalent to climate change." People with long-term conditions often feel they are a problem, a burden to themselves, their family and friends. Providers struggle to support patients to self-manage. The Practical Reviews in Self-Management Support (PRISMS) taxonomy lists what provider actions might support patient self-management. OBJECTIVE: To offer providers advice on how to support patient self-management. DESIGN: Semi-structured interviews with 40 patient-participants. SETTING AND PARTICIPANTS: Three case studies of primary health-care organizations in New Zealand and Canada serving diverse populations. Participants were older adults with long-term conditions who needed support to live in the community. MAIN OUTCOME MEASURES: Qualitative description to classify patient narratives of self-management support according to the PRISMS taxonomy with thematic analysis to explore how support was acceptable and effective. RESULTS: Patients identified a relationship-in-action as the mechanism, the how by which providers supported them to self-manage. When providers acted upon knowledge of patient lives and priorities, these patients were often willing to try activities or medications they had resisted in the past. Effective self-management support saw PRISMS components delivered in patient-specific combinations by individual providers or teams. DISCUSSION AND CONCLUSIONS: Providers who establish relationships with patients can support them to self-manage and improve health outcomes. Delivery of taxonomy components, in the absence of a relationship, is unlikely to be either acceptable or effective. Providers need to be aware that social determinants of health can constrain patients' options to self-manage.

Should we embed randomized controlled trials within action research: arguing from a case study of telemonitoring.

BACKGROUND: Action research (AR) and randomized controlled trials (RCTs) are usually considered to be theoretically and practically incompatible. However, we argue that their respective strengths and weaknesses can be complementary. We illustrate our argument from a recent study assessing the effect of telemonitoring on health-related quality of life, self-care, hospital use, costs and the experiences of patients, informal carers and health care professionals in two urban hospital services and one remote rural primary care service in New Zealand. METHODS: Data came from authors' observations and field notes of discussions with three groups: the healthcare providers and healthcare consumers who participated in the research, and a group of 17 researchers and collaborators. The consumers had heart failure (Site A, urban), airways disease (Site B, urban), and diabetes (Site C, rural). The research ran from 2008 (project inception) until 2012 (project close-off). Researchers came from a wide range of disciplines. Both RCT and AR methods were recognised from early in the process but often worked in parallel rather than together. In retrospect, we have mapped our observed research processes to the AR cycle characteristics (creation of communicative space, democracy and participation, iterative learning and improvement, emergence, and accommodation of different ways of knowing). RESULTS: We describe the context, conduct and outcomes of the telemonitoring trial, framing the overall process in the language of AR. Although not fully articulated at the time, AR processes made the RCT sensitive to important context, e.g. clinical processes. They resulted in substantive changes to the design and conduct of the RCT, and to interpretation and uptake of findings, e.g. a simpler technology procurement process emerged. Creating a communicative space enabled co-design between the researcher group and collaborators from the provider participant group, and a stronger RCT design. CONCLUSIONS: It appears possible to enhance the utility of RCTs by explicitly embedding them in an AR framework to shape stronger RCT design. The AR process and characteristics may enable researchers to evaluate telehealth while enhancing rather than compromising the quality of an RCT, where research results are returned to practice as part of the research process. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry, reference ACTRN12610000269033 .

Telecare for diabetes, CHF or COPD: effect on quality of life, hospital use and costs. A randomised controlled trial and qualitative evaluation.

OBJECTIVES: To assess the effect of telecare on health related quality of life, self-care, hospital use, costs and the experiences of patients, informal carers and health care professionals. METHODS: Patients were randomly assigned either to usual care or to additionally entering their data into a commercially-available electronic device that uploaded data once a day to a nurse-led monitoring station. Patients had congestive heart failure (Site A), chronic obstructive pulmonary disease (Site B), or any long-term condition, mostly diabetes (Site C). Site C contributed only intervention patients - they considered a usual care option to be unethical. The study took place in New Zealand between September 2010 and February 2012, and lasted 3 to 6 months for each patient. The primary outcome was health-related quality of life (SF36). Data on experiences were collected by individual and group interviews and by questionnaire. RESULTS: There were 171 patients (98 intervention, 73 control). Quality of life, self-efficacy and disease-specific measures did not change significantly, while anxiety and depression both decreased significantly with the intervention. Hospital admissions, days in hospital, emergency department visits, outpatient visits and costs did not differ significantly between the groups. Patients at all sites were universally positive. Many felt safer and more cared-for, and said that they and their family had learned more about managing their condition. Staff could all see potential benefits of telecare, and, after some initial technical problems, many staff felt that telecare enabled them to effectively monitor more patients. CONCLUSIONS: Strongly positive patient and staff experiences and attitudes complement and contrast with small or non-significant quantitative changes. Telecare led to patients and families taking a more active role in self-management. It is likely that subgroups of patients benefitted in ways that were not measured or visible within the quantitative data, especially feelings of safety and being cared-for. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12610000269033.

Population health in New Zealand 2000-2013: From determinants of health to targets.

OBJECTIVE: To determine how 'population health' has been understood in practice and policy and has influenced health system restructuring in New Zealand since 2000. METHODS: Interviews in 2007-2008 with managers, clinicians, government policy advisors and academics were undertaken to explore the relationships between population health, determinants of health, and health system restructuring. This was augmented by a review of major government health policies from 2009 to 2013 to establish which notions of population health were reflected. RESULTS: Population health shifted from a broad notion of health determinants to focus on a small number of quantifiable health targets driven by financial incentives. Meantime, an emphasis on 'quality and safety' impeded population health activities. District Health Board programmes to identify high risk individuals, by disease or hospital service utilisation, diverted attention from broader population health outcomes. District Health Boards were not held accountable for integrating a population health approach in service planning and did not initiate or lead intersectoral work. Community consultation was limited. Primary Health Organisations, although mandated to address population health, typically aligned with the small-business model of general practice making service integration difficult to achieve. In policy, 'population health' dropped from favour in the mid-2000s, although many documents, outside the health sector, carried forward these values. CONCLUSION: A progressively narrower focus on a small number of health targets and on organisational processes undermined earlier policy intentions and health system restructuring that sought to improve broader population health outcomes.

A qualitative study of recruiting for investigations in primary care: Plan, pay, minimise intermediaries and keep it simple.

OBJECTIVES: We sought successful strategies to recruit patient and practitioner participants for studies from primary care. METHODS: We interviewed people who had participated and who had not participated in a randomised controlled trial that did not reach recruitment target and successful primary care researchers. The participants and non-participants were mostly Pacific peoples. Interviews were recorded, transcribed, and analysed and reported using qualitative description. The study took place in New Zealand in 2013-2014. RESULTS: A total of 31 people were interviewed. Researchers agreed that recruitment was usually the single most important phase of research but was usually under-planned and under-funded. All researchers recommended a pilot study that addressed recruitment. Successful researchers actively monitored recruitment and adapted the process as needed. Most projects were undertaken by our researchers recruited via an intermediary such as a general practice nurse. Strategies were adapted to the target population, such as specific acute or chronic conditions, age, ethnicity and gender. Intermediaries were actively recruited and retained in a manner that was often more intense than actual participant recruitment and retention. 'Layers' of intermediaries were kept to a minimum as each layer needed to be actively recruited and retained and each layer reduced participant recruitment rates. The task of intermediaries was kept simple and minimal and they were paid in some manner. Similarly, participant workload was kept to a minimum and they were paid in some manner that was intended to cover their participation costs and perhaps a little more. Even the most experienced researchers did not always achieve recruitment targets. Our interviews focused on patient participants but included recruiting general practitioners, nurses and others as research subjects. CONCLUSION: Strategy details varied with the target population but had in common the need to intensively recruit and retain intermediaries, minimise layers of intermediaries, and the need to pay and minimise workload for both intermediaries and participants.

Patients' engagement in primary care: powerlessness and compounding jeopardy. A qualitative study.

BACKGROUND: Primary health care does not adequately respond to populations known to have high needs such as those with compounding jeopardy from chronic conditions, poverty, minority status and age; as such populations report powerlessness. OBJECTIVE: To explore what poor older adults with chronic conditions who mostly belong to ethnic minority groups say they want from clinicians. SETTING AND PARTICIPANTS: Participants were older adults whose chronic conditions were severe enough to require hospital admission more than twice in the previous 12 months. All participants lived in poor localities in Auckland, New Zealand's largest city. METHODS: Forty-two in-depth interviews were conducted and analysed using qualitative description. RESULTS: An outward acceptance of health care belied an underlying dissatisfaction with low engagement. Participants did not feel heard and wanted information conveyed in a way that indicated clinicians understood them in the context of their lives. Powerlessness, anger, frustration and non-concordance were frequent responses. DISCUSSION AND CONCLUSIONS: Despite socio-cultural and disease-related complexity, patients pursue the (unrealised) ideal of an engaged therapeutic relationship with an understanding clinician. Powerlessness means that the onus is upon the health system and the clinician to engage. Engagement means building a relationship on the basis of social, cultural and clinical knowledge and demonstrating a shift in the way clinicians choose to think and interact in patient care. Respectful listening and questioning can deepen clinicians' awareness of patients' most important concerns. Enabling patients to direct the consultation is a way to integrate clinician expertise with what patients need and value.

Health equity in the New Zealand health care system: a national survey.

INTRODUCTION: In all countries people experience different social circumstances that result in avoidable differences in health. In New Zealand, Maori, Pacific peoples, and those with lower socioeconomic status experience higher levels of chronic illness, which is the leading cause of mortality, morbidity and inequitable health outcomes. Whilst the health system can enable a fairer distribution of good health, limited national data is available to measure health equity. Therefore, we sought to find out whether health services in New Zealand were equitable by measuring the level of development of components of chronic care management systems across district health boards. Variation in provision by geography, condition or ethnicity can be interpreted as inequitable. METHODS: A national survey of district health boards (DHBs) was undertaken on macro approaches to chronic condition management with detail on cardiovascular disease, chronic obstructive pulmonary disease, congestive heart failure, stroke and diabetes. Additional data from expert informant interviews on program reach and the cultural needs of Maori and Pacific peoples was sought. Survey data were analyzed on dimensions of health equity relevant to strategic planning and program delivery. Results are presented as descriptive statistics and free text. Interviews were transcribed and NVivo 8 software supported a general inductive approach to identify common themes. RESULTS: Survey responses were received from the majority of DHBs (15/21), some PHOs (21/84) and 31 expert informants. Measuring, monitoring and targeting equity is not systematically undertaken. The Health Equity Assessment Tool is used in strategic planning but not in decisions about implementing or monitoring disease programs. Variable implementation of evidence-based practices in disease management and multiple funding streams made program implementation difficult. Equity for Maori is embedded in policy, this is not so for other ethnic groups or by geography. Populations that conventional practitioners find hard to reach, despite recognized needs, are often underserved. Nurses and community health workers carried a disproportionate burden of care. Cultural and diversity training is not a condition of employment. CONCLUSIONS: There is a struggle to put equity principles into practice, indicating will without enactment. Equity is not addressed systematically below strategic levels and equity does not shape funding decisions, program development, implementation and monitoring. Equity is not incentivized although examples of exceptional practice, driven by individuals, are evident across New Zealand.

Systematic care to reduce ethnic disparities in diabetes care.

AIMS: We sought to determine whether systematic care can reduce the gap in diabetes control between Maori and non-Maori. METHODS: A Primary Health Organisation implemented a chronic care management programme for diabetes in 2005. The data constitute an open, prospective cohort followed for approximately two years. Data describing process were also collected. RESULTS: There were 1311 people with diabetes (354 Maori, 957 non-Maori). Maori started with higher HbA(1c) (mean 8.1%, SD 1.9) than non-Maori (7.1%, SD 1.4) but over about 2 years HbA(1c) for Maori improved to that of non-Maori. LDL and systolic blood pressure decreased for both groups. Improved glucose in Maori was not due to starting insulin or metformin, and rates of sulphonylurea prescription increased in both groups. Urinary albumin:creatinine ratio remained higher for Maori throughout. Smoking rates and Body Mass Index (both higher in Maori) did not change. There is no evidence of selective retention in the cohort. CONCLUSION: Likely essential components of the programme were that governance was equally shared between Maori and non-Maori; prolonged nurse consultations were free to the patient; nurses used a formal written wellness plan; nurses were formally trained to support patient self-management; and a computer template supported structured care.