Genetic research in Aboriginal and Torres Strait Islander communities : continuing the conversation

Genetics is at the forefront of medical research, but it is rarely used in Indigenous health research projects. This discussion paper is the outcome of the first ever national discussion of the conduct of genetic research in Indigenous communities in Australia convened by the Lowitja Institute in 2010. It reviews the ethical issues relevant to genetic research in an Australian Indigenous context; existing guidelines for genetic research in indigenous communities internationally; and literature on genetic literacy in Indigenous contexts. Finally, the discussion paper presents a summary of the productive and challenging conversations at the round table.

Exploring Heideggerian hermeneutic phenomenology: a perfect fit for midwifery research

BACKGROUND: Heideggerian hermeneutic phenomenology has been used widely to understand the meaning of lived experiences in health research. For midwifery scholars this approach enables deep understanding of women's and midwives' lived experiences of specific phenomena. However, for beginning researchers this is not a methodology for the faint hearted. It requires a period of deep immersion to come to terms with at times impenetrable language and perplexing concepts. OBJECTIVES: This paper aims to assist midwives to untangle and examine some of the choices they face when they first come to terms with an understanding of this methodology and highlights the methodology's capacity to reveal midwifery authenticity and holistic practice. DISCUSSION: The illumination of a selection of various concepts underpinning hermeneutic phenomenology will inform midwives considering this methodology as suitable framework for exploring contemporary midwifery phenomena.

All in the blood: a review of Aboriginal Australians' cultural beliefs about blood and implications for biospecimen research

Public participation in medical research and biobanking is considered key to advances in scientific discovery and translation to improved health care. Cultural concerns relating to blood have been found to affect the participation of indigenous peoples and minorities in research, but such concerns are rarely specified in the literature. This article presents a review of the role of blood in Australian Aboriginal cultures. We discuss the range of meanings and uses of blood in traditional culture, including their use in ceremonies, healing, and sorcery. We draw on more recent literature on Aboriginal Australians and biomedicine to consider how traditional beliefs may be changing over time. These findings provide an empirical basis for researchers and bioethicists to develop culturally grounded strategies to boost the participation of Aboriginal Australians in biomedical research. They also serve as a model for integrating anthropological literature with bioethical concerns that could be applied to other indigenous and minority groups.

A different kettle of fish : mental health strategies for Australian fishers, and farmers

Despite being typically represented and managed under the same policy umbrella, fishers face different challenges than do their farming counterparts. This paper unpacks the findings of research depicting poor levels of mental health and well-being among Australian commercial wild-catch fishers. The research is considered in the context of widespread acceptance that farmers tend to exhibit worse than average mental health outcomes due, at least in part, to the environmental uncertainties of climate change. In particular it is stressed that the insecurity of fishing concessions (quota and licenses), is a key driver of chronic livelihood insecurity, resulting in reports of stress, depression and suicide. A call is made for the separation of health research in the fishing and farming industries. Importantly, the role that tenure insecurity plays in the perpetuation of poor mental health among fishers should be acknowledged and addressed so that the fishing industry can maximize the strength of its human capital.

Harnessing the potential of community-based participatory research approaches in bipolar disorder

BACKGROUND: Despite the rapid growth in the sophistication of research on bipolar disorder (BD), the field faces challenges in improving quality of life (QoL) and symptom outcomes, adapting treatments for marginalized communities, and disseminating research insights into real-world practice. Community-based participatory research (CBPR)-research that is conducted as a partnership between researchers and community members-has helped address similar gaps in other health conditions. This paper aims to improve awareness of the potential benefits of CBPR in BD research. METHODS: This paper is a product of the International Society for Bipolar Disorders (ISBD) Taskforce on Community Engagement which includes academic researchers, healthcare providers, people with lived experience of BD, and stakeholders from BD community agencies. Illustrative examples of CBPR in action are provided from two established centres that specialize in community engagement in BD research: the Collaborative RESearch Team to study psychosocial issues in BD (CREST.BD) in Canada, and the Spectrum Centre for Mental Health Research in the United Kingdom. RESULTS AND DISCUSSION: We describe the philosophy of CBPR and then introduce four core research areas the BD community has prioritized for research: new treatment approaches, more comprehensive outcome assessments, tackling stigma, and enhanced understanding of positive outcomes. We then describe ways in which CBPR is ideal for advancing each of these research areas and provide specific examples of ways that CBPR has already been successfully applied in these areas. We end by noting potential challenges and mitigation strategies in the application of CBPR in BD research. CONCLUSIONS: We believe that CBPR approaches have significant potential value for the BD research community. The observations and concerns of people with BD, their family members, and supports clearly represent a rich source of information. CBPR approaches provide a collaborative, equitable, empowering orientation to research that builds on the diversity of strengths amongst community stakeholders. Despite the potential merits of this approach, CBPR is as yet not widely used in the BD research field, representing a missed opportunity.

Changing the environment to improve population health: a framework for considering exposure in natural experimental studies

There is renewed optimism regarding the use of natural experimental studies to generate evidence as to the effectiveness of population health interventions. Natural experimental studies capitalise on environmental and policy events that alter exposure to certain social, economic or environmental factors that influence health. Natural experimental studies can be useful for examining the impact of changes to 'upstream' determinants, which may not be amenable to controlled experiments. However, while natural experiments provide opportunities to generate evidence, they often present certain conceptual and methodological obstacles. Population health interventions that alter the physical or social environment are usually administered broadly across populations and communities. The breadth of these interventions means that variation in exposure, uptake and impact may be complex. Yet many evaluations of natural experiments focus narrowly on identifying suitable 'exposed' and 'unexposed' populations for comparison. In this paper, we discuss conceptual and analytical issues relating to defining and measuring exposure to interventions in this context, including how recent advances in technology may enable researchers to better understand the nature of population exposure to changes in the built environment. We argue that when it is unclear whether populations are exposed to an intervention, it may be advantageous to supplement traditional impact assessments with observational approaches that investigate differing levels of exposure. We suggest that an improved understanding of changes in exposure will assist the investigation of the impact of complex natural experiments in population health.

The e-health literacy framework: A conceptual framework for characterizing e-health users and their interaction with e-health systems

In current e-health research and development there is a need for a broader understanding of the capabilities and resources required for individuals to use and benefit from e-health services, i.e. their e-health literacy. The aim of
this study was to develop a new conceptualisation of e-health literacy with consideration of the experiences of a wide range of stakeholders and in alignment with current technologies. Concept mapping was used to generate a comprehensive and grounded model of e-health literacy. Concept mapping workshop participants included patients, health professionals and medical informatics experts. Eight workshops, carried out in Denmark and United Kingdom, generated 450 statements, separated into 128 clusters. Through an inductive structured analysis, seven domains were identified: 1. Ability to process information, 2. Engagement in own health, 3. Ability to engage actively with digital services, 4. Feeling safe and in control, 5. Motivation to engage with digital services, 6. Having access to systems that work, and 7. Digital services that suit individual needs. These empirically derived domains form an e-health literacy framework (eHLF) and provide new insights into the user’s ability to understand, access and use e-health technologies. The eHLF offers a framework for evaluating an individual’s or a population’s capacity to understand, use and benefit from technology to promote and maintain their health. Such a framework also provides a potential checklist for the development and improvement of e-health services.

Turning tapes into text: issues surrounding the transcription of interviews

Transcription of interview data is a common practice in qualitative health research. However, there has been little discussion of the techniques of transcription and the issues inherent in the use of transcription as a strategy for managing qualitative data in nursing publications. The process of transcription may disclose or obscure certain information. Researchers need to question practices of transcription that have been taken for granted and make transparent the processes used to preserve the integrity of data. This paper first examines research reported in nursing and allied health journals employing interviews for data collection and the attention given to the transcription phase. It then deals with issues of concern regarding the transcription of interviews, and offers suggestions for promoting validity.

Objectively assessing "Walkability" of local communities: using GIS to identify the relevant environmental attributes.

Geographic Information Systems (GIS) may be used to measure objectively, those features of the built environment that may influence walking. Public health research on environmental determinants of physical activity in adults shows that different factors can influence walking for recreation, compared to walking for transport. Most studies have used perceived (self-report) rather than objective measures of potentially relevant environmental attributes. We describe how a previously-developed index of ‘walkability’ was operationalized in an Australian context, using available spatial data.               Attributes believed to be of relevance to walking for transport, that are measurable using GIS, are: Dwelling density (higher-density neighborhoods support greater retail and service variety, resulting in shorter, walkable distances between facilities; driving and parking are more difficult and time consuming). Connectivity (higher intersection densities provide people with a greater variety of potential routes, easier access to major roads where public transport is available and shorter times to get to destinations). Land use mix (the more varied the land use mix and built form, then the more conducive it is to walk to various destinations). Net retail area (there are more options for destinations where goods and services may be purchased and more local employment opportunities that can be reached by walking). The associations of these attributes with walking behaviors can be  examined separately, or in combination. Such GIS data are very helpful in fundamental studies of the environmental determinants of behavior, and also in applied policy research for cities, regions or local communities, to
address public health and environmental issues.

Unhealthy landscapes: policy recommendations on land use change and infectious disease emergence

Anthropogenic land use changes drive a range of infectious disease outbreaks and emergence events and modify the transmission of endemic infections. These drivers include agricultural encroachment, deforestation, road construction, dam building, irrigation, wetland modification, mining, the concentration or expansion of urban environments, coastal zone degradation, and other activities. These changes in turn cause a cascade of factors that exacerbate infectious disease emergence, such as forest fragmentation, disease introduction, pollution, poverty, and human migration. The Working Group on Land Use Change and Disease Emergence grew out of a special colloquium that convened international experts in infectious diseases, ecology, and environmental health to assess the current state of knowledge and to develop recommendations for addressing these environmental health challenges. The group established a systems model approach and priority lists of infectious diseases affected by ecologic degradation. Policy-relevant levels of the model include specific health risk factors, landscape or habitat change, and institutional (economic and behavioral) levels. The group recommended creating Centers of Excellence in Ecology and Health Research and Training, based at regional universities and/or research institutes with close links to the surrounding communities. The centers' objectives would be 3-fold: a) to provide information to local communities about the links between environmental change and public health ; b) to facilitate fully interdisciplinary research from a variety of natural, social, and health sciences and train professionals who can conduct interdisciplinary research ; and c) to engage in science-based communication and assessment for policy making toward sustainable health and ecosystems.