Towards a translational medical research ecosystem

In this paper we introduce a novel design for a translational medical research ecosystem. Translational medical research is an emerging field of work, which aims to bridge the gap between basic medical science research and clinical research/patient care. We analyze the key challenges of digital ecosystems for translational research, based on real world scenarios posed by the Lab for Translational Research at the Harvard Medical School and the Genomics Research Centre of the Griffith University, and show how traditional IT approaches fail to fulfill these challenges. We then introduce our design for a translational research ecosystem. Several key contributions are made: A novel approach to managing ad-hoc research ecosystems is introduced; a new security approach for translational research is proposed which allows each participating site to retain control over its data and define its own policies to ensure legal and ethical compliance; and a design for a novel interactive access control framework which allows users to easily share data, while adhering to their organization's policies is presented.

Knowledge translation in men’s health research: development and delivery of content for use online

Background: Men can be hard to reach with face-to-face health-related information, while increasingly, research shows that they are seeking health information from online sources. Recognizing this trend, there is merit in developing innovative online knowledge translation (KT) strategies capable of translating research on men’s health into engaging health promotion materials. While the concept of KT has become a new mantra for researchers wishing to bridge the gap between research evidence and improved health outcomes, little is written about the process, necessary skills, and best practices by which researchers can develop online knowledge translation.
Objective: Our aim was to illustrate some of the processes and challenges involved in, and potential value of, developing research knowledge online to promote men’s health.

Methods: We present experiences of KT across two case studies of men’s health. First, we describe a study that uses interactive Web apps to translate knowledge relating to Canadian men’s depression. Through a range of mechanisms, study findings were repackaged with the explicit aim of raising awareness and reducing the stigma associated with men’s depression and/or help-seeking. Second, we describe an educational resource for teenage men about unintended pregnancy, developed for delivery in the formal Relationship and Sexuality Education school curricula of Ireland, Northern Ireland (United Kingdom), and South Australia. The intervention is based around a Web-based interactive film drama entitled “If I Were Jack”.

Results: For each case study, we describe the KT process and strategies that aided development of credible and well-received online content focused on men’s health promotion. In both case studies, the original research generated the inspiration for the interactive online content and the core development strategy was working with a multidisciplinary team to develop this material through arts-based approaches. In both cases also, there is an acknowledgment of the need for gender and culturally sensitive information. Both aimed to engage men by disrupting stereotypes about men, while simultaneously addressing men through authentic voices and faces. Finally, in both case studies we draw attention to the need to think beyond placement of content online to delivery to target audiences from the outset.

Conclusions: The case studies highlight some of the new skills required by academics in the emerging paradigm of translational research and contribute to the nascent literature on KT. Our approach to online KT was to go beyond dissemination and diffusion to actively repackage research knowledge through arts-based approaches (videos and film scripts) as health promotion tools, with optimal appeal, to target male audiences. Our findings highlight the importance of developing a multidisciplinary team to inform the design of content, the importance of adaptation to context, both in terms of the national implementation context and consideration of gender-specific needs, and an integrated implementation and evaluation framework in all KT work.

Comparative study : health research on traffic noise pollution vs. Technical research on traffic noise mitigation

Community awareness and the perception on the traffic noise related health impacts have increased significantly over the last decade resulting in a large volume of public inquiries flowing to Road Authorities for planning advice. Traffic noise management in the urban environment is therefore becoming a “social obligation”, essentially due to noise related health concerns. Although various aspects of urban noise pollution and mitigation have been researched independently, an integrated approach by stakeholders has not been attempted. Although the current treatment and mitigation strategies are predominantly handled by the Road Agencies, a concerted effort by all stakeholders is becoming mandatory for effective and tangible outcomes in the future. A research project is underway a RMIT University, Australia, led by the second author to consider the use of “hedonic pricing” for alternative noise amelioration treatments within the road reserve and outside the road reserve. The project aims to foster a full range noise abatement strategy encompassing source, path and noise receiver. The benefit of such a study would be to mitigate the problem where it is most effective and would defuse traditional “authority” boundaries to produce the optimum outcome. The project is conducted in collaboration with the Department of Main Roads Queensland, Australia and funded by the CRC for Construction Innovation. As part of this study, a comprehensive literature search is currently underway to investigate the advancements in community health research, related to environmental noise pollution, and the advancements in technical and engineering research in mitigating the issue. This paper presents the outcomes of this work outlining state of the art, national and international good practices and gap analysis to identify major anomalies and developments.

Recruiting older adults to health research studies : a systematic review

Objective: To provide a systematic review of papers comparing the effectiveness of different strategies to recruit older adults (aged 50 years and over) to participate in health research studies, to guide successful recruitment in future research. Methods: Four major databases were searched for papers published between 1995 and 2008 with: target group aged 50 years or over; participants allocated to receive one of two or more recruitment strategies; and an outcome measure of response rate or enrolment in study. Results: Twelve papers were included in the review. Conclusion: For postal questionnaires, recruitment strategies used with older adults had comparable outcomes to those used to recruit from the general population. For other types of studies, strategies involving face-to-face contact may be more effective than indirect methods, but this needs to be balanced against feasibility. Overall, little evidence on the topic exists and more rigorous investigation is necessary.

Robustness in health research : do differences in health measures, techniques, and time frame matter?

Survey-based health research is in a boom phase following an increased amount of health spending in OECD countries and the interest in ageing. A general characteristic of survey-based health research is its diversity. Different studies are based on different health questions in different datasets; they use different statistical techniques; they differ in whether they approach health from an ordinal or cardinal perspective; and they differ in whether they measure short-term or long-term effects. The question in this paper is simple: do these differences matter for the findings? We investigate the effects of life-style choices (drinking, smoking, exercise) and income on six measures of health in the US Health and Retirement Study (HRS) between 1992 and 2002: (1) self-assessed general health status, (2) problems with undertaking daily tasks and chores, (3) mental health indicators, (4) BMI, (5) the presence of serious long-term health conditions, and (6) mortality. We compare ordinal models with cardinal models; we compare models with fixed effects to models without fixed-effects; and we compare short-term effects to long-term effects. We find considerable variation in the impact of different determinants on our chosen health outcome measures; we find that it matters whether ordinality or cardinality is assumed; we find substantial differences between estimates that account for fixed effects versus those that do not; and we find that short-run and long-run effects differ greatly. All this implies that health is an even more complicated notion than hitherto thought, defying generalizations from one measure to the others or one methodology to another.

Establishing Aboriginal health research priorities in Victoria

The Victorian Aboriginal Community Controlled Health Organisation (VACCHO) conducted a research project to find out the impact of social determinants such as education, employment, income, racism and housing on the health and wellbeing of Aboriginal peoples. Forums and workshops were conducted to establish future research outcomes and priorities. The project will help in developing localised and community-oriented solutions to Aboriginal health issues.

Establishing Aboriginal health research priorities in Victoria

Short overview of the VACCHO Social Determinants Research Forum (2010).

Exploiting SNOMED CT concepts and relationships for clinical information retrieval : Australian e-Health Research Centre and Queensland University of Technology at the TREC 2012 Medical Track

The Australian e-Health Research Centre and Queensland University of Technology recently participated in the TREC 2012 Medical Records Track. This paper reports on our methods, results and experience using an approach that exploits the concept and inter-concept relationships defined in the SNOMED CT medical ontology. Our concept-based approach is intended to overcome specific challenges in searching medical records, namely vocabulary mismatch and granularity mismatch. Queries and documents are transformed from their term-based originals into medical concepts as defined by the SNOMED CT ontology, this is done to tackle vocabulary mismatch. In addition, we make use of the SNOMED CT parent-child `is-a' relationships between concepts to weight documents that contained concept subsumed by the query concepts; this is done to tackle the problem of granularity mismatch. Finally, we experiment with other SNOMED CT relationships besides the is-a relationship to weight concepts related to query concepts. Results show our concept-based approach performed significantly above the median in all four performance metrics. Further improvements are achieved by the incorporation of weighting subsumed concepts, overall leading to improvement above the median of 28% infAP, 10% infNDCG, 12% R-prec and 7% Prec@10. The incorporation of other relations besides is-a demonstrated mixed results, more research is required to determined which SNOMED CT relationships are best employed when weighting related concepts.

Arts-health intersections : a model of practice for consistency in the arts-health sector

The field of Arts-Health practice and research has grown exponentially in the past 30 years. While researchers are using applied arts as the subject of investigation in research, the evaluation of practice and participant benefits has a limited general focus. In recent years, the field has witnessed a growing concentration on the evaluation of health outcomes, outputs and tangential benefits for participants engaging in Arts-Health practice. The wide range of methodological approaches applied arts practitioners implement make the field difficult to define. This article introduces the term Arts-Health intersections as a model of practice and framework to promote consistency in design, implementation and evaluative processes in applied arts programmes promoting health outcomes. The article challenges the current trend to solely evaluate health outcomes in the field, and promotes a concurrent and multidisciplinary methodological approach that can be adopted to promote evaluation, consistency and best practice in the field of Arts-Health intersections. The article provides a theoretical overview of Arts-Health intersections, and then takes this theoretical platform and details a best model of practice for developing Arts-Health intersections and presents this model as a guide.

Poststructuralism, qualitative methodology, and public health : research methods as a legitimization strategy for knowledge

The appearance of poststructuralism as a research methodology in public health literature raises questions about the history and purpose of this research. We examine (a) some aspects of the history of qualitative methods and their place within larger social and research domains, and (b) the purposes of a public health research that employs poststructuralist philosophy delineating the methodological issues that require consideration in positing a poststructural analysis. We argue against poststructuralism becoming a research methodology deployed to seize the pubic health debate, rather than being employed for its own particular critical strengths.

“Yarning” as a method for community-based health research with indigenous women : the indigenous women's wellness research program

This project explores yarning as a methodology for understanding health and wellness from an indigenous woman's perspective. Previous research exploring indigenous Australian women's perspectives have used traditional Western methodologies and have often been felt by the women themselves to be inappropriate and ineffective in gathering information and promoting discussion. This research arose from the indigenous women themselves, and resulted in the exploration of using yarning as a methodology. Yarning is a conversational process that involves the sharing of stories and the development of knowledge. It prioritizes indigenous ways of communicating, in that it is culturally prescribed, cooperative, and respectful. The authors identify different types of yarning that are relevant throughout their research, and explain two types of yarning—family yarning and cross-cultural yarning—which have not been previously identified in research literature. This project found that yarning as a research method is appropriate for community-based health research with indigenous Australian women. This may be an important finding for health professionals and researchers to consider when working and researching with indigenous women from other countries.

Using GPS technology to (re)-examine operational definitions of 'neighbourhood' in place-based health research

BACKGROUND Inconsistencies in research findings on the impact of the built environment on walking across the life course may be methodologically driven. Commonly used methods to define 'neighbourhood', from which built environment variables are measured, may not accurately represent the spatial extent to which the behaviour in question occurs. This paper aims to provide new methods for spatially defining 'neighbourhood' based on how people use their surrounding environment. RESULTS Informed by Global Positioning Systems (GPS) tracking data, several alternative neighbourhood delineation techniques were examined (i.e., variable width, convex hull and standard deviation buffers). Compared with traditionally used buffers (i.e., circular and polygon network), differences were found in built environment characteristics within the newly created 'neighbourhoods'. Model fit statistics indicated that exposure measures derived from alternative buffering techniques provided a better fit when examining the relationship between land-use and walking for transport or leisure. CONCLUSIONS This research identifies how changes in the spatial extent from which built environment measures are derived may influence walking behaviour. Buffer size and orientation influences the relationship between built environment measures and walking for leisure in older adults. The use of GPS data proved suitable for re-examining operational definitions of neighbourhood.

Gender inequities in health research : an Australian perspective

This chapter presents the current challenges facing legislators, regulators, researchers, and ethics committees in determining how and when to include women appropriately in research, and ensure that sex analysis of research results is routinely performed. It offers five issues that require attention to address these challenges: that national regulatory statements could provide researchers with definitions of the terms ‘sex’ , ‘gender’, and ‘gender equity’ in research; that sex and gender analysis should be built into health research protocols; the lack of internationally comparable data regarding the rates of inclusion of men and women presents a major hurdle for analysing the efficacy of different regulatory strategies; the accessibility of data would be facilitated by a requirement for publication of the results of health research to include descriptions of sex analysis performed on research data; and that institutional review boards, research ethics committees, and researchers themselves require better education about the scientific and ethical importance of including of women in clinical research.

Regulatory options for gender equity in health research

It is clear that where a disease affects men and women differently, research on potential therapies or cures should include both men and women and should examine whether the therapy is effective and safe for both sexes. In this paper we consider whether there is an appropriate role for law in regulating to ensure an examination of these sex- and gender-specific aspects in health research. We consider the relative advantages and disadvantages of pursuing a regulatory approach to achieving gender equity in the field of women's health by exploring first, the meaning of gender equity, and second, the regulatory mechanisms that might be best suited to promoting the goal of gender equity. Within our examination of different regulatory forms and mechanisms, we also interrogate the shift from gender-neutral provisions relating to sex in favor of generalized notions of fairness that remove any specific consideration of sex.

Portal-based support for mental health research

This paper describes experiences with the use of the Globus toolkit and related technologies for development of a secure portal that allows nationally-distributed Australian researchers to share data and application programs. The portal allows researchers to access infrastructure that will be used to enhance understanding of the causes of schizophrenia and advance its treatment, and aims to provide access to a resource that can expand into the world’s largest on-line collaborative mental health research facility. Since access to patient data is controlled by local ethics approvals, the portal must transparently both provide and deny access to patient data in accordance with the fine-grained access permissions afforded individual researchers. Interestingly, the access protocols are able to provide researchers with hints about currently inaccessible data that may be of interest to them, providing them the impetus to gain further access permissions.