Initial experiences in developing e-health solutions across Scotland

The MRC funded Virtual Organisations for Trials and Epidemiological Studies (VOTES) project is a collaborative effort between e-Science, clinical and ethical research centres across the UK including the universities of Oxford, Glasgow, Imperial, Nottingham and Leicester. The project started in September 2005 and is due to run for 3 years. The primary goal of VOTES is to develop a reusable Grid framework through which a multitude of clinical trials and epidemiological studies can be supported. The National e-Science Centre (NeSC) at the University of Glasgow are looking at developing the Scottish components of this framework. This paper presents the initial experiences in developing this framework and in accessing and using existing data sets, services and software across the NHS in Scotland

Towards a virtual research environment for paediatric endocrinology across Europe

Paediatric endocrinology is a medical specialty dealing with variations of physical growth and sexual development in childhood. Genetic anomalies that can cause disorders of sexual development in children are rare. Given this, sharing and collaboration on the small number of cases that occur is needed by clinical experts in the field. The EU-funded EuroDSD project (www.eurodsd.eu) is one such collaboration involving clinical centres and clinical and genetic experts across Europe. Through the establishment of a virtual research environment (VRE) supporting sharing of data and a variety of clinical and bioinformatics analysis tools, EuroDSD aims to provide a research infrastructure for research into disorders of sex development. Security, ethics and information governance are at the heart of this infrastructure. This paper describes the infrastructure that is being built and the inherent challenges in security, availability and dependability that must be overcome for the enterprise to succeed

Timor leste collaborative project: a short report

This report discusses findings from a small-scale scoping study, which is part of a larger curriculum project—a collaborative venture between staff from the Universidade Nacional Timor Lorosa'e (UNTL) and a New Zealand university. The aim of the wider project is to develop a context-sensitive English language curriculum for students at UNTL who are undergoing pre-service training to be teachers of English as a foreign language in local secondary schools. (Details of the institutional and linguistic context are provided in the appendix.) According to Norton (2000), investment by learners is a key factor in the successful implementation of a new curriculum: "if learners invest in a second language, they do so with the understanding that they will acquire a wider range of symbolic and material resources, which will increase their value in the social world" (Norton, 2000, pp. 165-166). Thus, when designing the curriculum, it is important to ensure that the students will not only understand how to use the specific learning tasks but that it also expands their repertoire of skills and knowledge for application in their subsequent professional and social lives. The report begins by outlining the history and objectives of the project before explaining the specific research questions posed for the scoping study. The means of collecting data will be outlined and examples of the participants' attitudes will be presented based on open-ended questionnaire responses. These findings will be discussed in terms of how they might lead to the design of a curriculum which is internationally-framed and context-sensitive in terms both of its content and implementation. The report will conclude with the further steps that are being taken to move the project to its next phase

Bridging the Data Divide: Understanding State Agency and University Research Partnerships within SLDS

This report examines this question through an analysis of state agency-university researcher partnerships that exist in State Longitudinal Data Systems (SLDS). Building state agency-university researcher partnerships is an important value of SLDS. To examine state agency-university researcher partnerships within SLDS, our analysis is guided by the following set of questions based on 71 interviews conducted with individuals most directly involved with SLDS efforts in Virginia, Maryland, Texas and Washington. The findings from this analysis suggest that each state’s SLDS organization and governance structure includes university partners in differing ways. In general, stronger partnership efforts are driven by legislative action or executive-level leadership. Regardless of structure, the operation of these partnerships is shaped by the agency’s previous experience and cultural norms surrounding the value and inclusion of university researchers

Bridging the Data Divide: Understanding State Agency and University Research Partnerships within SLDS

This report examines this question through an analysis of state agency-university researcher partnerships that exist in State Longitudinal Data Systems (SLDS). Building state agency-university researcher partnerships is an important value of SLDS. To examine state agency-university researcher partnerships within SLDS, our analysis is guided by the following set of questions based on 71 interviews conducted with individuals most directly involved with SLDS efforts in Virginia, Maryland, Texas and Washington. The findings from this analysis suggest that each state’s SLDS organization and governance structure includes university partners in differing ways. In general, stronger partnership efforts are driven by legislative action or executive-level leadership. Regardless of structure, the operation of these partnerships is shaped by the agency’s previous experience and cultural norms surrounding the value and inclusion of university researchers

Development of grid frameworks for clinical trials and epidemiological studies

E-Health initiatives such as electronic clinical trials and epidemiological studies require access to and usage of a range of both clinical and other data sets. Such data sets are typically only available over many heterogeneous domains where a plethora of often legacy based or in-house/bespoke IT solutions exist. Considerable efforts and investments are being made across the UK to upgrade the IT infrastructures across the National Health Service (NHS) such as the National Program for IT in the NHS (NPFIT) [1]. However, it is the case that currently independent and largely non-interoperable IT solutions exist across hospitals, trusts, disease registries and GP practices – this includes security as well as more general compute and data infrastructures. Grid technology allows issues of distribution and heterogeneity to be overcome, however the clinical trials domain places special demands on security and data which hitherto the Grid community have not satisfactorily addressed. These challenges are often common across many studies and trials hence the development of a re-usable framework for creation and subsequent management of such infrastructures is highly desirable. In this paper we present the challenges in developing such a framework and outline initial scenarios and prototypes developed within the MRC funded Virtual Organisations for Trials and Epidemiological Studies (VOTES) project [2]

Native IYG: Improving Psychosocial Protective Factors for HIV/STI and Teen Pregnancy Prevention among Youth in American Indian/Alaska Native Communities

Background: Few HIV/STI and pregnancy prevention programs for youth in American Indian and Alaska Native (AI/AN) communities have been rigorously evaluated despite sexual health disparities in this population. This study reports the evaluation of a culturally adapted Internet-based HIV/STI and pregnancy prevention program for AI/AN youth, Native It’s Your Game (Native IYG). Methods: A randomized study was conducted with 523 youth (12 to 14 years old), recruited from 25 tribal sites in Alaska, Arizona, and the Pacific Northwest. Participants were surveyed at baseline and upon completion of treatment or comparison interventions. Multivariable linear regression models were used to assess impact on short term psychosocial determinants of sexual initiation. Results: A sample of 402 intervention (n=290) and comparison (n=112) youth completed the post-intervention survey (76.9% retention) from 1 to 462 days post-baseline (mean = 114, SD = ±96.67). Participants were 55.5% female, mean age of 13.0 (± 0.97) years with 86.1% self-reporting as AI/AN. Reasons not to have sex, STI knowledge, condom knowledge, condom availability self-efficacy, and condom use self-efficacy were significantly impacted (all P ≤ .01). Limitations included variability in intervention exposure and time between data collection time points. Conclusions: Native IYG demonstrated efficacy to impact short-term psychosocial determinants of sexual behavior in a sample of predominantly AI/AN middle school youth

Patients' experiences of seeking help for emotional concerns in primary care: doctor as drug, detective and collaborator

Background NICE guidelines for the management of emotional concerns in primary care emphasise the importance of communication and a trusting relationship, which is difficult to operationalise in practice. Current pressures in the NHS mean that it is important to understand care from a patient perspective. This study aimed to explore patients’ experiences of primary care consultations for emotional concerns and what patients valued when seeking care from their GP. Methods Eighteen adults with experience of consulting a GP for emotional concerns participated in 4 focus groups. Data were analysed thematically. Results (1) Doctor as Drug: Patients’ relationship with their GP was considered therapeutic with continuity particularly valued. (2) Doctor as Detective and Validator: Patients were often puzzled by their symptoms, not recognising their emotional concerns. GPs needed to play the role of detective by exploring not just symptoms, but the person and their life circumstances. GPs were crucial in helping patients understand and validate their emotional concerns. (3) Doctor as Collaborator: Patients prefer a collaborative partnership, but often need to relinquish involvement because they are too unwell, or take a more active role because they feel GPs are ill-equipped or under too much pressure to help. Patients valued: GPs booking their follow up appointments; acknowledgement of stressful life circumstances; not relying solely on medication. Conclusions Seeking help for emotional concerns is challenging due to stigma and unfamiliar symptoms. GPs can support disclosure and understanding of emotional concerns by fully exploring and validating patients’ concerns, taking into account patients’ life contexts. This process of exploration and validation forms the foundation of a curative, trusting GP-patient relationship. A trusting relationship, with an emphasis on empathy and understanding, can make patients more able to share involvement in their care with GPs. This process is cyclical, as patients feel that their GP is caring, interested, and treating them as a person, further strengthening their relationship. NICE guidance should acknowledge the importance of empathy and validation when building an effective GP-patient partnership, and the role this has in supporting patients’ involvement in their care