When the moon rises and you want to sing

Poetry by Frances Boyle

Training and Curriculum Development Session

The Training and Curriculum Development Session at iPRES 2008 will bring together a range of experts actively involved in the international digital preservation training arena. Through a series of presentations and modulated discussion it is hoped that the session will be of interest and value to both practitioners and managers who are seeking to find a path through this sometimes fragmented area. Aims of the Session The session will be as interactive and participative as possible in what is hoped will be a stimulating and timely topic. The session is a mix of case studies from the panel, followed by an interactive discussion between the audience and the speakers. Our hope is that we can move away from simple reportage of the contributors ’ projects to a sessio

Incorporating patient preferences in the management of multiple long-term conditions: is this a role for clinical practice guidelines?

Background: Clinical practice guidelines provide an evidence-based approach to managing single chronic conditions, but their applicability to multiple conditions has been actively debated. Incorporating patient-preference recommendations and involving consumers in guideline development may enhance their applicability, but further understanding is needed. Objectives: To assess guidelines that include recommendations for comorbid conditions to determine the extent to which they incorporate patient-preference recommendations; use consumer-engagement processes during development, and, if so, whether these processes produce more patient-preference recommendations; and meet standard quality criteria, particularly in relation to stakeholder involvement. Design: A review of Australian guidelines published from 2006 to 2014 that incorporated recommendations for managing comorbid conditions in primary care. Document analysis of guidelines examined the presence of patient-preference recommendations and the consumer-engagement processes used. The Appraisal of Guidelines for Research and Evaluation instrument was used to assess guideline quality. Results: Thirteen guidelines were reviewed. Twelve included at least one core patient-preference recommendation. Ten used consumer-engagement processes, including participation in development groups (seven guidelines) and reviewing drafts (ten guidelines). More extensive consumer engagement was generally linked to greater incorporation of patient-preference recommendations. Overall quality of guidelines was mixed, particularly in relation to stakeholder involvement. Conclusions: Guidelines do incorporate some patient-preference recommendations, but more explicit acknowledgement is required. Consumer-engagement processes used during guideline development have the potential to assist in identifying patient preferences, but further research is needed. Clarification of the consumer role and investment in consumer training may strengthen these processes.Journal of Comorbidity 2015;5(1):122–13

To the point - diabetes information for people with intellectual disability and their carers

Objective: To describe the perceptions and experiences of living with diabetes as told by people with intellectual disability and their carers and support staff. Design: Qualitative semi-structured interview study. Setting: Southeast Queensland, Australia. Subjects: 67 people - adults with intellectual disability (9), paid carers and support staff of adults with intellectual disability (31), family carers and support staff of adults with intellectual disability (8), service co-ordinators (12), health professionals (6) and other workers in the sector. Methods: Focus group discussions were held with the participants. Their perceptions and experiences of living with and managing intellectual disability and diabetes were recorded and the themes of the discussions studied. Results: The findings revealed a number of shortcomings in relation to diabetes care in a population of people with intellectual disability and their carers and support staff. There are higher than average support needs when diabetes is present. There is resentment at intrusion in their lives by diabetes from people with disability. There are feelings of fear and insecurity about diabetes in carers and support staff. Carers and support staff feel that generally they lack knowledge and also lack support from their organizations to manage both the intellectual disability and the diabetes. Conclusion: The general lack of confidence and knowledge about diabetes makes it difficult for people with intellectual disability and their carers and support staff to function in a effective and satisfying way. There is a need for guidelines

Are care plans suitable for the management of multiple conditions?

Care plans have been part of the primary care landscape in Australia for almost two decades. With an increasing number of patients presenting with multiple chronic conditions, it is timely to consider whether care plans meet the needs of patients and clinicians.To review and benchmark existing care plan templates that include recommendations for comorbid conditions, against four key criteria: (i) patient preferences, (ii) setting priorities, (iii) identifying conflicts and synergies between conditions, and (iv) setting dates for reviewing the care plan.Document analysis of Australian care plan templates published from 2006 to 2014 that incorporated recommendations for managing comorbid conditions in primary care.Sixteen templates were reviewed. All of the care plan templates addressed patient preference, but this was not done comprehensively. Only three templates included setting priorities. None assisted in identifying conflicts and synergies between conditions. Fifteen templates included setting a date for reviewing the care plan.Care plans are a well-used tool in primary care practice, but their current format perpetuates a single-disease approach to care, which works contrary to their intended purpose. Restructuring care plans to incorporate shared decision-making and attention to patient preferences may assist in shifting the focus back to the patient and their care needs

The Contribution of consumer health organisations to chronic disease self management in the context of primary care.

This project aims to answer the question, what are the current and potential contributions of chronic illness-focused self-help organisations in the integrated delivery of primary health care?The research reported in this paper is a project of the Australian Primary Health Care Research Institute which is supported by a grant from the Australian Government Department of Health and Ageing under the Primary Health Care Research Evaluation and Development Strategy

Modulation of interleukin 2 high affinity binding to human T cells by a pyrimidodiazepine insect metabolite

AbstractAn insect metabolite containing the little known pyrimido[4,5-b][l,4]diazepine ring system has been found to act as an effective mimic of tetrahydrobiopterin in its ability to modulate the affinity of interleukin 2 (IL-2) for its receptors on human T cells. Semi-empirical molecular orbital calculations reveal that while tetrahydrobiopterin has considerable flexibility, the pyrimidodiazepine has rather few conformational options and offers a useful model for exploring the nature of the pterin binding site

Ask For It: Development of a Health Advocacy Intervention for Adults with Intellectual Disability and Their General Practitioners

Two per cent of people in Australia have intellectual disability and the adults in this population often have poor health status. This poor health can be partly attributed to communication difficulties encountered by people with intellectual disability and also health professionals in consultation settings. The design and development processes of an educational intervention to improve communication between patients, general practitioners (GPs) and also advocates in a population of adults with intellectual disability are described. The design process was collaborative and involved adults with intellectual disability, GPs, parents, support workers and other professionals. It was a nine-step development process and led to the final communication tool package, the ask (advocacy skills kit) 5-year health diary and educational session. As a result of the collaborative design and development processes, this diary included qualities not found in most other medical record keeping systems: visual appeal, advice on how to be a health advocate, utility for a range of users, privacy, portability and sufficient capacity to record personal patient information which enhanced communication between doctor, patient and advocate. It is proving to be very popular. Clear implications were found for applying established criteria and incorporating the needs of users in the design of educational interventions in the intellectually disabled population. Health promotion tools aiming to improve the current poor health status of adults with intellectual disability should be developed further

Clinical consultations and investigations before and after discontinuation of endocrine therapy in women with primary breast cancer

Objective: Although clinical trials recommend that women with hormone-dependent primary breast cancer remain on endocrine therapy for at least 5 years, up to 60% discontinue treatment early. We determined whether these women had consulted with clinicians or had investigations for cancer recurrence or metastasis around the time they discontinued endocrine therapy, and whether clinical contact continued after discontinuation. Methods: We performed case-control and cohort studies of women from the 45 and Up Study who were diagnosed with invasive primary breast cancer between January 2003 and December 2008, and who had ≥12 months of anastrozole, exemestane, letrozole or tamoxifen subsequently dispensed. Results: Women who consulted general practitioners and surgeons/oncologists, and women who had breast ultrasound/mammogram were just as likely to discontinue endocrine therapy within 30 days as those who did not consult these clinicians or have this investigation. In the 6 months after early discontinuation, women who discontinued endocrine therapy were less likely to consult general practitioners (adjusted risk ratio [RRadj] 0.80; 95% confidence interval [CI] 0.75, 0.86) and surgeons/oncologists (RRadj 0.62; 95% CI 0.54, 0.72) than those who remained on therapy. Conclusions: For most women, endocrine therapy discontinuation did not appear to follow consultation with doctors managing their breast cancer treatment or investigations for recurrence or metastasis. However, women who discontinued endocrine therapy were less likely to consult their general practitioner or surgeon/oncologist in the 6 months following discontinuation than those who remained on therapy. Of the clinician groups studied, general practitioners are best placed to engage and support women to continue pharmacotherapy. However, mechanisms are needed to prompt clinicians to do this at every visit