Consumer engagement critical to success in an Australian research project: reflections from those involved.

This paper describes the people, activities and methods of consumer engagement in a complex research project, and reflects on the influence this had on the research and people involved, and enablers and challenges of engagement. The 2.5-year Integrating and Deriving Evidence Experiences and Preferences (IN-DEEP) study was conducted to develop online consumer summaries of multiple sclerosis (MS) treatment evidence in partnership with a three-member consumer advisory group. Engagement methods included 6-monthly face-to-face meetings and email contact. Advisory group members were active in planning, conduct and dissemination and translational phases of the research. Engaging consumers in this way improved the quality of the research process and outputs by: being more responsive to, and reflective of, the experiences of Australians with MS; expanding the research reach and depth; and improving the researchers' capacity to manage study challenges. Advisory group members found contributing their expertise to MS research satisfying and empowering, whereas researchers gained confidence in the research direction. Managing the unpredictability of MS was a substantive challenge; the key enabler was the 'brokering role' of the researcher based at an MS organisation. Meaningfully engaging consumers with a range of skills, experiences and networks can make important and unforeseen contributions to research success.

Producing an evidence-based treatment information website in partnership with people affected by multiple sclerosis.

BACKGROUND AND AIMS: In earlier work, we identified that people affected by multiple sclerosis (MS) can have difficulty finding online treatment information that is up to date, trustworthy, understandable, and applicable to personal circumstances, but does not provoke confusion or negative emotional consequences. The objective was to develop online consumer summaries of MS treatment evidence (derived from Cochrane Reviews) that respond to identified treatment information needs of people affected by MS. METHODS: A 2-phase mixed-methods project, conducted in partnership with consumers and an MS organisation. Phase 1 included review panels with consumers (Australians affected by MS) and health professionals to test paper-based treatment summaries before development, and pilot testing of the website. Phase 2 involved an online survey after website launch. RESULTS: Eighty-three participants (85% affected by MS) took part. Phase 1 participants strongly endorsed key review summary components, including layering information, and additional sections to aid personal applicability. Participants additionally suggested questions for health professionals. Participants across both phases were receptive to the idea of being provided with Cochrane Review summaries online but were seeking other types of evidence and information, such as personal experiences and the latest experimental treatments, which could not be provided. While the small survey sample size (n = 58) limits application of the results to a broader population, the website was viewed favourably, as a useful, understandable, and trustworthy information source. CONCLUSION: We describe a partnership approach to developing online evidence-based treatment information, underpinned by an in-depth understanding of consumers' information needs.

Assistive technology pricing in Australia: is it efficient and equitable?

Objective To examine available systematically collected evidence regarding prices for assistive technology (AT; e.g. disability aids and equipment) in Australia with other comparable countries. Issues of appropriate AT pricing are coming to the fore as a consequence of efforts to move to consumer-centric purchasing decisions with the National Disability Insurance Scheme (NDIS) and also in the recent aged care reforms. Methods We identified and present three sets of AT price comparisons. Two comparisons were based solely on the lowest prices advertised on the internet, and one comparison examined recommended retail prices. Variables essential to ensuring accurate comparisons, as well as significant supply-chain issues were also examined and considered in the analyses. Results The first internet-only price comparison found that overall AT prices were 38% higher in Australia compared to other countries, but did not factor in shipping and other related costs that are essential to include given that most AT is imported. The second internet-only price comparison found that overall Australian prices were 24% lower when shipping and related costs were included. The recommended retail price comparisons found that Australian prices were between 14% and 27% lower. Prices for internet-only retailers (those with no bricks-and-mortar presence) are consistently lower for all products than those sold by retailers with actual shop-fronts. Further, there is no evidence of suppliers earning supranormal profits in Australia. Conclusions The results indicate that AT prices in Australia are efficient and equitable, with no significant indicators of market failure which would require government intervention. Efforts to reduce prices through the excessive use of large-scale government procurement programs are likely to reduce diversity and innovation in AT and raise AT prices over time. Open markets and competition with centralised tracking of purchases and providers to minimise possible over-servicing/over-charging align well with the original intention of the NDIS, and are likely to yield the best outcomes for consumers at the lowest costs. What is known about the topic? Government-funded programs are used extensively to purchase AT because it is a primary enabler for people of all ages with disabilities. Perceptions of unreasonably high prices for AT in Australia are resulting in the widespread adoption of bulk purchasing and related strategies by governments. What does this paper add? Carefully undertaken systematic price comparisons between Australia and comparable Organization For Economic Cooperation and Development countries indicate that, on average, Australian prices are lower than elsewhere when delivery to Australia is taken into account. It was also found that prices at brick-and-mortar shops, with all the services they provide to ensure the appropriateness of the products provided to meet the consumers' needs and goals, are substantially higher than Internet purchases in which the consumer bears all the risks and responsibilities for outcomes. What are the implications? Overuse of government bulk purchasing and similar arrangements will lead to less diversity in the available AT products, related services and retail outlets, resulting in less choice for consumers and higher risks of poor outcomes through less focus on matching consumers with the 'right' products for their needs and goals, and ultimately higher AT prices over time as competition is reduced to a few major suppliers.

Online health information seeking: how people with multiple sclerosis find, assess and integrate treatment information to manage their health.

BACKGROUND AND OBJECTIVE: The Internet is increasingly prominent as a source of health information for people with multiple sclerosis (MS). But there has been little exploration of the needs, experiences and preferences of people with MS for integrating treatment information into decision making, in the context of searching on the Internet. This was the aim of our study. DESIGN: Sixty participants (51 people with MS; nine family members) took part in a focus group or online forum. They were asked to describe how they find and assess reliable treatment information (particularly online) and how this changes over time. Thematic analysis was underpinned by a coding frame. RESULTS: Participants described that there was both too much information online and too little that applied to them. They spoke of wariness and scepticism but also empowerment. The availability of up-to-date and unbiased treatment information, including practical and lifestyle-related information, was important to many. Many participants were keen to engage in a 'research partnership' with health professionals and developed a range of strategies to enhance the trustworthiness of online information. We use the term 'self-regulation' to capture the variations in information seeking behaviour that participants described over time, as they responded to their changing information needs, their emotional state and growing expertise about MS. CONCLUSIONS: People with MS have developed a number of strategies to both find and integrate treatment information from a range of sources. Their reflections informed the development of an evidence-based consumer web site based on summaries of MS Cochrane reviews.

A water soluble additive to suppress respirable dust from concrete-cutting chainsaws: a case study.

Respirable dust is of particular concern in the construction industry because it contains crystalline silica. Respirable forms of silica are a severe health threat because they heighten the risk of numerous respirable diseases. Concrete cutting, a common work practice in the construction industry, is a major contributor to dust generation. No studies have been found that focus on the dust suppression of concrete-cutting chainsaws, presumably because, during normal operation water is supplied continuously and copiously to the dust generation points. However, there is a desire to better understand dust creation at low water flow rates. In this case study, a water-soluble surfactant additive was used in the chainsaw's water supply. Cutting was performed on a free-standing concrete wall in a covered outdoor lab with a hand-held, gas-powered, concrete-cutting chainsaw. Air was sampled at the operator's lapel, and around the concrete wall to simulate nearby personnel. Two additive concentrations were tested (2.0% and 0.2%), across a range of fluid flow rates (0.38-3.8 Lpm [0.1-1.0 gpm] at 0.38 Lpm [0.1 gpm] increments). Results indicate that when a lower concentration of additive is used exposure levels increase. However, all exposure levels, once adjusted for 3 hours of continuous cutting in an 8-hour work shift, are below the Occupational Safety and Health Administration (OSHA) permissible exposure limit (PEL) of 5 mg/m(3). Estimates were made using trend lines to predict the fluid flow rates that would cause respirable dust exposure to exceed both the OSHA PEL and the American Conference of Governmental Industrial Hygienists (ACGIH®) threshold limit value (TLV).

The dynamic shear moduli of whale blubber.

BACKGROUND: Blubber is a thick adipose tissue located beneath the dermas. Its viscoelastic properties affect whale tracking tag design, hydrodynamics, and acoustical properties that can be used to study animal behavior and avoid ship strikes. OBJECTIVE: Measure the dynamic shear storage and loss moduli for whale blubber at distances below the dermas for several species. Also, measure the non-collagen and collagen protein content to explore a correlation to viscoelastic properties. METHODS: Blubber samples were obtained from whale strandings (humpback, sperm, and two gray) in the Pacific Northwest. Shear moduli were measured at oscillation frequencies of 0.31 Hz to 25 Hz using a rotational rheometer. Protein content was measured using a staining protocol. RESULTS: Storage modulus and loss modulus variation with frequency was very consistent across all samples tested. Log-linear and extended polynomials respectively had R-squared values of at least 0.96. Variation of both moduli with depth was fit reasonably well by fourth-order polynomials. Protein content trends varied with species. CONCLUSIONS: The samples used in this study were necrotic tissue, however the variation with frequency and to a lesser extent depth was very consistent and may have a broader applicability. Protein content was not found to correlate to moduli values.

Keeping cool: use of air conditioning by australians with multiple sclerosis.

Despite the known difficulties many people with MS have with high ambient temperatures, there are no reported studies of air conditioning use and MS. This study systematically examined air conditioner use by Australians with MS. A short survey was sent to all participants in the Australian MS Longitudinal Study cohort with a response rate of 76% (n = 2,385). Questions included hours of air-conditioner use, areas cooled, type and age of equipment, and the personal effects of overheating. Air conditioners were used by 81.9% of respondents, with an additional 9.6% who could not afford an air conditioner. Regional and seasonal variation in air conditioning use was reported, with a national annual mean of 1,557 hours running time. 90.7% reported negative effects from overheating including increased fatigue, an increase in other MS symptoms, reduced household and social activities, and reduced work capacity. Households that include people with MS spend between 4 and 12 times more on keeping cool than average Australian households.