Sustainable primary health care services in rural and remote areas: innovation and evidence

Objective: To highlight how evidence from studies of innovative rural and remote models of service provision can inform global health system reform in order to develop appropriate, accessible and sustainable primary health care (PHC) services to ‘difficult‐to‐service’ communities. Methods: The paper synthesises evidence from remote and rural PHC health service innovations in Australia. Results: There is a strong history of PHC innovation in Australia. Successful health service models are ‘contextualised’ to address diverse conditions. They also require systemic solutions, which address a range of interlinked factors such as governance, leadership and management, adequate funding, infrastructure, service linkages and workforce. An effective systemic approach relies on alignment of changes at the health service level with those in the external policy environment. Ideally, every level of government or health authority needs to agree on policy and funding arrangements for optimal service development. A systematic approach in addressing these health system requirements is also important. Service providers, funders and consumers need to know what type and level of services they can reasonably expect in different community contexts, but there are gaps in agreed indicators and benchmarks for PHC services. In order to be able to comprehensively monitor and evaluate services, as well as benchmarks, we need adequate national information systems. Conclusions: Despite the gaps in our knowledge, we do have a significant amount of information about what works, where and why. At a time of global PHC reform, applying this knowledge will contribute significantly to the development of appropriate, sustainable PHC services and improving access.     

Barriers to patient information provision in primary care: patients' and general practitioners' experiences and expectations of information for low back pain

Background As patient involvement in health‐care increases, the role of information is crucial, especially in conditions where self‐management is considered an integral part of care. However, the suitability and applicability of much patient information has not been appraised in terms of how far it meets patients' information needs. Aims To ascertain patients' and clinicians' experiences and expectations of information in low back pain in order to suggest a suitable ‘patient‐centred’ content for a patient information pack to be used in a primary care setting. Methods A qualitative study using semi‐structured interviews with General Practitioners (GPs) (n = 15) and focus groups comprising patients with low back pain (n = 37). Results Barriers to information‐giving for low back pain in primary care exist. Patients are dissatisfied with the information they receive from their GPs, especially regarding diagnosis and treatment. Patients tend to access information from a variety of other sources, which is often contradictory, conflicts with research evidence and leads to unreasonable expectations. GPs have varying views regarding the value of patient information and are equivocal about their roles as information providers. Although The Back Book is generally acceptable as a patient information leaflet for low back pain, attention to the tone of the text is required. Conclusions Barriers exist to patient information provision, both generally and for low back pain, which need to be addressed in order to close the gap between strategy and implementation. Improving clinician communication skills and involving patients in developing information materials which meet their needs are crucial to this process.     

Perceptions of unmet needs for community social care services in England. A comparison of working carers and the people they care for

Previous UK research has found expressed unmet need for services by unpaid working carers and among disabled and older people. There are, however, suggestions from research that views on unmet needs for services differ between carers and care‐recipients. Working carers in the UK say that the care‐recipient is sometimes reluctant to accept services and the few international comparative dyad studies that have been carried out find that carers perceive higher unmet need than care‐recipients. Recent policy discussions in England have also recognised that there may be differences of opinion. We collected data in 2013 from working carer/care‐recipient dyads in England about perceived need for services for the care‐recipient, disability, unpaid care hour provision and individual and socio‐demographic characteristics. We find that care‐recipients as well as their carers perceive high unmet need for services, although carers perceive higher unmet need. For carers, unmet need is associated with the disability of the carer‐recipient and being the daughter or son of the care‐recipient; for care‐recipients it is associated with unpaid care hours, carers’ employment status and carers’ health. The majority of dyads agree on need for services, and agreement is higher when the working carer provides care for 10 hours or more hours a week. Services for care‐recipients may enable working carers to remain in employment so agreement on needs for services supports the implementation of legislation, policy and practice that has a duty to, or aims to, support carer's employment.     

Facilitators and barriers to informed choice in self‐directed support for young people with disability in transition

The objective of this qualitative study was to explore the concept of ‘informed choice’ in the context of self‐directed support (SDS) for young people with disability in transition from child to adult services. SDS is a major policy initiative introduced by the Scottish government to promote personalised services by redefining the relationship between the citizen and the state regarding social care supports. Informed choice is one of the underpinning principles of the Social Care (Self‐directed Support) (Scotland) Act 2013. The theoretical approach to the research study was that of critical realism and, in particular, realistic evaluation. The research design used multiple qualitative methods involving secondary analysis of archived qualitative longitudinal interview data, and primary interviews with nine individuals, representing a wide range of stakeholders in Scotland. The study developed hypotheses concerning the facilitators and barriers to informed choice for young people with disability. Factors facilitating informed choice included supportive family and professional networks, advocacy, accessible information and experiential knowledge. Barriers to informed choice were seen to be low expectations, poor collaboration between child and adult services and bureaucratic organisational cultures. SDS is entering the implementation phase of the policy cycle in Scotland and this study will inform emerging policy, practice and future research into personalisation for young people with disability in transition. In particular, the findings point to the need to involve young people with disability at an early stage in choice‐making, and to foster self‐advocacy skills and supportive social networks. Informed choice for young people with disability needs to be seen as a process over time involving both information and emotions and both need to be supported to ensure successful transitions.     

Using geographic information systems to understand health care access

BACKGROUND: Determining a community's health care access needs and testing interventions to improve access are difficult. This challenge is compounded by the task of translating the relevant data into a format that is clear and persuasive to policymakers and funding agencies. Geographic information systems can analyze and transform complex data from various sources into maps that illustrate problems effortlessly for experts and nonexperts. OBJECTIVE: To combine the patient data of a community health center (CHC) with health care survey data to display the CHC service area, the community's health care access needs, and relationships among access, poverty, and political boundaries. DESIGN: Georeferencing, analyzing, and mapping information from 2 databases. SETTING: Boone County, Missouri. PARTICIPANTS: Community health center patients and survey respondents. MAIN OUTCOME MEASURES: Maps that define the CHC service area and patient demographics and show poor health care access in relation to the CHC service area, CHC utilization in relation to poverty, and rates of health care access by geopolitical region. RESULTS: The CHC serves a distinctly different area than originally targeted. Subpopulations with unmet health care access needs and poverty were identified by census tract. These underserved populations fell within geopolitical boundaries that were easily linked to their elected officials. CONCLUSIONS: Geographic information systems are powerful tools for combining disparate data in a visual format to illustrate complex relationships that affect health care access. These systems can help evaluate interventions, inform health services research, and guide health care policy. Arch Fam Med. 2000;9:971-978     

Ethnic and Indigenous access to early childhood healthcare services in Australia: parents' perceived unmet needs and related barriers

Objective: To evaluate the parents’ perceived unmet needs in early childhood healthcare services among Indigenous, non‐English‐speaking background (NESB) and English‐speaking background (ESB) children and the related barriers. Method: Data was from the Longitudinal Study of Australian Children (LSAC). Rao‐Scott chi‐square was used to examine the level of parents’ perceived unmet needs in three ethnic groups in early childhood healthcare services over a 12 month period. Survey logistic regression was used to assess the association between the groups of infants and the barriers to utilisation. Results: Ten per cent of Australian infants have at least one parents’ perceived unmet need in early childhood healthcare services. NESB (15.3%) and Indigenous (15.1%) infants were more likely than ESB infants (9.9%, p<0.001) to have parents’ perceived unmet needs in health care services. The barriers to service access include cost, transport problems, child care difficulties, service availability and family reasons. Parents of ESB infants were more likely to cite operating hours as the major barrier to accessing services. Conclusion: There were parents’ perceived unmet needs in a number of health services for all Australian infants, but at different levels by Indigenous, NESB and ESB groups. The most common barrier to services utilisation related to cost or private health insurance, availability and accessibility of service provision and other socioeconomic issues. Implications: Policy attention and operational changes are required to improve equity in accessing early childhood services, as well as to improve the overall access to healthcare services for all Australian infants.     

A study of patient expectations in a Norfolk general practice

Objective To use semi‐structured interviews to ascertain patterns in patients’ expectations of health care and the extent to which these expectations were met or not. Background In health policy it is important to evaluate health services from varying perspectives including consumers’. One concept of emerging importance in this regard is that of patient expectations. Whether expectations are met or not have been found to be related to general patient satisfaction with treatment and treatment compliance. However, there is conceptual and methodological uncertainty and little informing empirical work regarding what is an ‘expectation’ and how it should be measured. Design A qualitative study using semi‐structured interviews to elicit 20 GP patients’ expectations prior to their consultation. A post consultation interview gauged the extent to which these expectations had been met. Setting and participant Twenty patients of a GP practice in Norfolk (UK). Results Results suggest several different expectations, concerned with the doctor‐patient interaction, the specific processes of the consultation, outcomes, and issues to do with time and space. Conclusions This research has used an innovative exploratory approach to address the expectations of GP patients and has implications for how doctors ought to manage their consultations. These results will be used to inform the development of a quantitative expectations questionnaire so as to develop a validated measure of expectations. Such an instrument has great potential to aid in health care research and practice.     

Perceived needs of carers of people with psychosis: An Australian longitudinal population‐based study of caregivers of people with psychotic disorders

Studies have documented the perceived needs of carers of people with psychosis but most recruitment has utilised convenience sampling resulting in limited understanding of carers’ needs. This longitudinal study was conducted within the second Australian prevalence study of psychosis, aiming to obtain generalisable findings regarding perceived needs of carers of people with psychosis. Semi‐structured interviews were conducted with 98 carers of people with psychosis recruited in the Australian prevalence study of psychosis. Seventy‐eight of the carers were reinterviewed 1 year later to measure changes in their perceived needs. Correlational and paired T tests were conducted to identify relationships between perceived needs and carer's health and well‐being, and changes in levels of perceived needs over time. Qualitative responses were structurally coded by segmentation according to the Carers’ and Users’ Expectations of Services—Carer version. Thematic analysis of common words and phrases was undertaken to identify key themes concerning carers’ perceived needs. There was minimal improvement in carers’ perceived needs over time and their needs were closely related to their perception of their own social connectedness, psychological health and quality of life. Five themes were identified: Greater involvement of carers in the treatment plan, provision of relevant information to carers, multiple biopsychosocial support for carers, well‐being and independence interventions for people with psychosis, and choice to care and alternate caring arrangements. Although policy recognises the need to support carers, findings show that focused interventions are required to address carers’ perceived needs more holistically in current mental health services. To support carers’ recovery, services need to include carers in treatment planning, and consider ways to address their needs and improve their own health and well‐being.     

Beyond community-based diabetes management and the COAG coordinated care trial

Objective: This article describes the patient management processes developed during the Council of Australian Governments (COAG) coordinated care trial and use of health outcome measures to monitor changes in utilisation patterns and patient well‐being over time for a subgroup of 398 patients with type 2 diabetes. Design: The Eyre component of the South Australian (SA) HealthPlus coordinated care trial was a matched geographically controlled study in which the outcomes for the intervention group of 1350 patients were compared with those of a similar control group of 500 patients in another rural health region in SA. Setting: The trial was carried out on Eyre Peninsula in SA across populations in rural communities and in the main centres of Whyalla, Port Lincoln and Ceduna. Care planning was organised through general practitioner practices and services negotiated with allied health services and hospitals to meet patient needs. Subjects: The SA HealthPlus trial included 1350 patients with chronic and complex illness. A subset of this group comprising 398 patients with type 2 diabetes is described in this report. Patients recruited into the three‐year trial were care planned using a patient centred care planning model through which patient goals were generated along with medical management goals developed by clinicians and primary health care professionals. Relevant health services were scheduled in line with best practice and care plans were reviewed each year. Patient service utilisation, progress towards achieving health related goals and patient health outcomes were recorded and assessed to determine improvements in health and well‐being along with the cost and profile of the services provided. Results: Significant numbers of patients experienced improved health outcomes as a consequence of their involvement in the trial, and utilisation data showed reductions in hospital and medical expenditure for some patients. These results suggest that methods applied in the SA HealthPlus coordinated care trial have led to improvements in health outcomes for patients with diabetes and other chronic illnesses. In addition, the processes associated with the COAG trial motivated significant organisational change in the Regional Health Service as well as providing an opportunity to study the health and well‐being outcomes resulting from a major community health intervention. Conclusions: The importance of the SA HealthPlus trial has been the demonstrated link between a formal research trial and significant developments in the larger health system with the trial not only leading to improvements in clinical outcomes for patients, but also acting as a catalyst for organisational reform. We now need to look beyond the illness focus of health outcome research to develop population based health approaches to improving overall community well‐being. What is already known: Much work has been completed in recent years tracing the clinical impact of more effective management of patients with chronic illness. Evidence suggests that more structured management of patient care and better access resources and support can improve patient well‐being and reduce demand on acute care services. What is needed, however, are mechanisms for managing patients to access relevant care and to comply with best practice protocols. Lowered HbA1c readings correlate with reduced crises for diabetic patients, but how can we encourage patients to engage in practices that actually lower these levels? What this study adds: The current study, based on work carried out during the COAG coordinated care trials, suggests that a structured patient centred care planning process can improve patient knowledge of their condition and increase motivation for sustainable behaviour change in the way they manage their illness. These processes of patient engagement and symptom monitoring have led to better long‐term health and well‐being for patients with diabetes. The wider application of such processes of care management will be an important next step in improving the management of health and well‐being at larger population levels.     

Disclosing clinical adverse events to patients: can practice inform policy?

Objectives To understand patients’ and health professionals’ experience of Open Disclosure and how practice can inform policy. Background Open Disclosure procedures are being implemented in health services worldwide yet empirical evidence on which to base models of patient–clinician communication and policy development is scant. Design, setting and participants A qualitative method was employed using semi‐structured open‐ended interviews with 154 respondents (20 nursing, 49 medical, 59 clinical/administrative managerial, 3 policy coordinators, 15 patients and 8 family members) in 21 hospitals and health services in four Australian states. Results Both patients and health professionals were positive about Open Disclosure, although each differed in their assessments of practice effectiveness. We found that five major elements influenced patients’ and professionals’ experience of openly disclosing adverse events namely: initiating the disclosure, apologizing for the adverse event, taking the patient’s perspective, communicating the adverse event and being culturally aware. Conclusions Evaluating the impact of Open Disclosure refines policy implementation because it provides an evidence base to inform policy. Health services can use specific properties relating to each of the five Open Disclosure elements identified in this study as training standards and to assess the progress of policy implementation. However, health services must surmount their sensitivity to revealing the extent of error so that research into patient experiences can inform practice and policy development.     

Critical health infrastructure for refugee resettlement in rural Australia: Case study of four rural towns

Objective: To explore the reported impact of regional resettlement of refugees on rural health services, and identify critical health infrastructure for refugee resettlement. Design: Comparative case study, using interviews and situational analysis. Setting: Four rural communities in New South Wales, which had been the focus of regional resettlement of refugees since 1999. Participants: Refugees, general practitioners, practice managers and volunteer support workers in each town (n = 24). Results: The capacity of health care workers to provide comprehensive care is threatened by low numbers of practitioners, and high levels of turnover of health care staff, which results in attrition of specialised knowledge among health care workers treating refugees. Critical health infrastructure includes general practices with interest and surge capacity, subsidised dental services, mental health support services; clinical support services for rural practitioners; care coordination in the early settlement period; and a supported volunteer network. The need for intensive medical support is greatest in the early resettlement period for ‘catch‐up’ primary health care. Conclusion: The difficulties experienced by rural Australia in securing equitable access to health services are amplified for refugees. While there are economic arguments about resettlement of refugees in regional Australia, the fragility of health services in regional Australia should also be factored into considerations about which towns are best suited to regional resettlement.     

An investigation of culturally competent terminology in healthcare policy finds ambiguity and lack of definition

Objective : This research explored how the concept of cultural competence was represented and expressed through health policies that were intended to improve the quality and efficacy of healthcare provided to families from culturally marginalised communities, particularly women and children with refugee backgrounds. Method : A critical document analysis was conducted of policies that inform healthcare for families from culturally marginalised communities in two local government areas in South Australia. Results : The analysis identified two major themes: lack of, or inconsistent, definitions of ‘culture’ and ‘cultural competency’ and related terms; and the paradoxical use of language to determine care. Conclusions : Cultural competence within health services has been identified as an important factor that can improve the health outcomes for families from marginalised communities. However, inconsistency in definitions, understanding and implementation of cultural competence in health practice makes it difficult to implement care using these frameworks. Implications : Clearly defined pathways are necessary from health policy to inform culturally competent service delivery. The capacity for policy directives to effectively circumvent the potential deleterious outcomes of culturally incompetent services is only possible when that policy provides clear definitions and instructions. Consultation and partnership are necessary to develop effective definitions and processes relating to cultural competence.     

The patients’ right to information and citizens’ perspective of their information needs

The European office of the World Health Organization (WHO) is stressing on the importance of patients’ rights and their information need for quite some time now. There is hardly any study in Europe documenting the steps taken in these directions. With the aim of assessing the fulfilment of patients’ rights and their perceived health information needs, we conducted two telephone-based survey studies. The first study, conducted during February - March 2000 on a sample of 502 participants, involved four German speaking European cities, assessing the fulfilment levels with the patients’ rights. The second study, conducted during May to July 2001 on a sample of 3008 citizens in Germany, assessed their perceived health information needs. High degrees of patients’ rights fulfilment were found on: dignity, patient autonomy, humane treatment, free choice among providers, confidentiality and consent. Lower fulfilment was associated with patient information, coordination of care on transfer between inpatient / outpatient care sectors and the right to humane terminal care and dying in dignity. Health information need was felt mostly for: musculoskeletal disorders, disease prevention and health promotion, cardiovascular diseases, cancer and for administrative questions on sickness funds.     

Pilot study comparing patients’ valuation of health‐care services with Medicare’s relative value units

Background and aims Physician reimbursement for services and thus income are largely determined by the Medicare Resource‐Based Relative Value Scale. Patients’ assessment of the value of physician services has never been considered in the calculation. This study sought to compare patients’ valuation of health‐care services to Medicare’s relative value unit (RVU) assessments and to discover patients’ perceptions about the relative differences in incomes across physician specialties. Design Cross‐sectional survey. Participants and setting Individuals in select outpatient waiting areas at Johns Hopkins Bayview Medical Center. Methods Data collection included the use of a visual analog ‘value scale’ wherein participants assigned value to 10 specific physician‐dependent health‐care services. Informants were also asked to estimate the annualized incomes of physicians in specialties related to the abovementioned services. Comparisons of (i) the ‘patient valuation RVUs’ with actual Medicare RVUs, and (ii) patients’ estimations of physician income with actual income were explored using t‐tests. Outcomes Of the 206 eligible individuals, 186 (90%) agreed to participate. Participants assigned a significantly higher mean value to 7 of the 10 services compared with Medicare RVUs (P < 0.001) and the range in values assigned by participants was much smaller than Medicare’s (a factor of 2 vs. 22). With the exception of primary care, respondents estimated that physicians earn significantly less than their actual income (all P < 0.001) and the differential across specialties was thought to be much smaller (estimate: $88 225, actual: $146 769). Conclusion In this pilot study, patients’ estimations of the value health‐care services were markedly different from the Medicare RVU system. Mechanisms for incorporating patients’ valuation of services rendered by physicians may be warranted.     

Women Veterans’ Attrition from the VA Health Care System

PurposePatient attrition from the Veterans Health Administration (VA) health care system could undercut its mission to ensure care for eligible veterans. Attrition of women veterans could exacerbate their minority status and impede systemic efforts to provide high-quality care. We obtained women veterans’ perspectives on why they left or continued to use VA health care.MethodsA sampling frame of new women veteran VA patients was stratified by those who discontinued (attriters) and those who continued (non-attriters) using VA care. Semistructured interviews were conducted from 2017 to 2018. Transcribed interviews were coded for women's decision-making, contexts, and recommendations related to health care use.ResultsFifty-one women veterans (25 attriters and 26 non-attriters) completed interviews. Reasons for attrition included challenging patient care experiences (e.g., provider turnover, claim processing challenges) and the availability of private health insurance. Personal experiences with VA care (e.g., gender-specific care) were impactful in women's decision to use VA. The affordability of VA care was influential for both groups to stay connected to services. More than one-third of women originally categorized as attriters described subsequently reentering or planning to reenter VA care. Suggestions to decrease attrition included increasing outreach, improving access, and continuing to tailor care delivery to women veterans' needs.ConclusionsUnderstanding the drivers of patients’ decisions to use or not use the VA is critical for the development of strategies to improve retention of current patients and optimize health outcomes for veterans. Women veterans described complex reasons why they left or continued using VA, with cost/affordability playing an important role even in considerations of returning to VA after a long hiatus.     

More than technology and access: primary care patients' views on the use and non-use of health information in the Internet age

Over the past decade, there has been considerable interest in the transmission of health information made available though the Internet with increasing confidence being placed in the potential power of the Internet to transform communication, clinical practice and relationships with patients. Subsequent to the failure of a primary‐care‐based initiative designed to provide free assistance and access to health information via the Internet, a survey was conducted. Findings from this survey suggested that facilitating access to e‐information is necessary, but not in itself sufficient, to encourage current non‐users to start exploring the Internet. The qualitative study reported here was aimed at exploring the way in which people use and perceive the utility of Internet information for managing health and illness and engaging with the health service system. Data was gathered from two sources. Interviews and observations of a sample who had used a free primary‐care‐based Internet service (n = 5) and interviews with a sample drawn from a survey of patient attitudes to using the Internet for health information (n = 12). The less‐considered aspects of access and the use of e‐information for health matters related to the varied existing relationships respondents had to computers, health information and health professionals. One of the main reasons why some respondents do not use the Internet to access health information is related to a lack of perceived utility and pertinence of such information for managing their healthcare. The optimal and equitable use of the Internet as a means of complimenting health‐service utilisation will not emerge merely from increasing access to e‐information. The potential for narrowing or increasing inequality between the information rich and poor needs to be viewed in a broader psychosocial context. The latter includes the nature of existing relationships which people have with the health service and the value that people place on their own capacity to make use of information in managing their healthcare.     

The Healthy People 2010 outcomes for the care of children with special health care needs: an effective national policy for meeting mental health care needs?

Objectives To assess the effectiveness of the Maternal and Child Health Bureau’s (MCHB) Six Core Outcomes for children with special health care needs (CSHCN) as indicators in measuring the degree to which mental health care needs are met. Methods This study analyzes data from the 2001 National Survey of Children with Special Health Care Needs for 9,748 CSHCN who needed mental health care. Bivariate and logistic analyses were employed to investigate the impact of the MCHB’s Six Core Outcomes on the probability of having an unmet need for mental health services. Results Of the 2.3 million CSHCN in the U.S. who needed mental health care in 2001, almost one-fifth did not receive all of the mental health services that they needed. Ultimately, eight Outcomes and sub-categories of Outcomes were considered. Sixty-one percent of CSHCN with a need for mental health care had care that fulfills six of the eight considered Outcomes. Logistic analysis indicates that individual fulfillment of each of the Core Outcomes and fulfillment of additional Outcomes have a significant association with reducing the probability of having an unmet mental health care need for CSHCN. Conclusions This study is the first attempt to apply the Six Core Outcomes to meeting the needs for mental health care among CSHCN. Estimates of unmet need for mental health care suggest that efforts can be made to improve access for CSHCN. The initial estimates generated by this study indicate that the MCHB Outcomes are important in meeting children’s mental health needs and are important indicators for informing MCHB policy.     

Falling through the cracks: the gap between evidence and policy in responding to depression in gay, lesbian and other homosexually active people in Australia

Objective: To examine the evidence for a national policy response to depression among gay, lesbian and other homosexually active people in Australia. Methods: A literature review using database searches on depression among non‐heterosexual people then a web‐based search of national policy investigating how mental health needs in this population are addressed in Australia. Results: The literature review found that non‐heterosexual people experience depression at higher rates, but the literature on interventions was sparse. The policy analysis found no mention of depression or the broader mental health needs of non‐heterosexual people in key national mental health policy documents. These documents outline a policy approach for population groups with a higher prevalence of mental health problems, and stigma and discrimination are relevant associated factors, but only the National Suicide Strategy considers non‐heterosexual people an ‘at‐risk group’. Conclusions: The results suggest that the evidence on higher rates of depression in non‐heterosexual people is strong, but that this is not recognised in current national policy. Implications: Defining non‐heterosexual people as an ‘at‐risk’ group is appropriate, as is prioritising access to mental health services that are socially and culturally appropriate. Addressing homophobia as an associated factor would require a strategic policy approach across a range of sectors.