ORCID Profile
0000-0001-5800-4539
Current Organisation
Royal Perth Hospital
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Publisher: Wiley
Date: 18-04-2020
DOI: 10.1111/AJAG.12719
Publisher: BMJ
Date: 03-2021
Publisher: Journal of Orthopaedic & Sports Physical Therapy (JOSPT)
Date: 06-2022
Abstract: Involving patients as partners in research enables their concerns, perspectives, lived experiences, and priorities to be integrated into research. Involving patient partners improves research processes, outcomes, and translating findings into practice. Although musculoskeletal researchers consider that it is important to involve patient partners, few projects involve them. Researchers who involve patient partners report that the contributions of patient partners are very valuable, and researchers perceive the process to be less challenging than expected. Musculoskeletal research is staring at a significant unrealized opportunity to enhance the quality and impact of research and reduce research waste-think what the field could achieve if researchers and patients worked better together. A culture change is needed so that involving patient partners in musculoskeletal research becomes standard practice, expected and supported by funders, journals, research institutions, and researchers alike.
Publisher: BMJ
Date: 02-2022
DOI: 10.1136/BMJOPEN-2021-058826
Abstract: Preclinical, clinical and epidemiological studies support the hypothesis that aberrant systemic metabolism of amyloid beta (Aβ) in the peripheral circulation is causally related to the development of Alzheimer’s disease (AD). Specifically, recent studies suggest that increased plasma concentrations of lipoprotein-Aβ compromise the brain microvasculature, resulting in extravasation and retention of the lipoprotein-Aβ moiety. The latter results in an inflammatory response and neurodegeneration ensues. Probucol, a historic cholesterol-lowering drug, has been shown in murine models to suppress lipoprotein-Aβ secretion, concomitant with maintaining blood–brain-barrier function, suppressing neurovascular inflammation and supporting cognitive function. This protocol details the probucol in Alzheimer’s study, a drug intervention trial investigating if probucol has potential to attenuate cognitive decline, delay brain atrophy and reduce cerebral amyloid burden in patients with mild-to-moderate AD. The study is a phase II, randomised, placebo-controlled, double-blind single-site clinical trial held in Perth, Australia. The target s le is 314 participants with mild-to-moderate AD. Participants will be recruited and randomised (1:1) to a 104-week intervention consisting of placebo induction for 2 weeks followed by 102 weeks of probucol (Lorelco) or placebo. The primary outcome is changed in cognitive performance determined via the Alzheimer’s Disease Assessment Scales-Cognitive Subscale test between baseline and 104 weeks. Secondary outcomes measures will be the change in brain structure and function, cerebral amyloid load, quality of life, and the safety and tolerability of Lorelco, after a 104week intervention. The study has been approved by the Bellberry Limited Human Research Ethics Committee (approval number: HREC2019-11-1063 Version 4, 6 October 2021). Informed consent will be obtained from participants prior to any study procedures being performed. The investigator group will disseminate study findings through peer-reviewed publications, key conferences and local stakeholder events. Australian New Zealand Clinical Trials Registry (ACTRN12621000726853).
Publisher: Wiley
Date: 10-2022
DOI: 10.1111/IMJ.15816
Abstract: Biological and targeted synthetic disease‐modifying antirheumatic drugs (b/tsDMARD) have been an important advance in the management of inflammatory arthritis, but are expensive medications, carry a risk of infection and other adverse effects, and are often perceived as a burden by patients. We used GRADE methodology to develop recommendations for dose reduction and discontinuation of b/tsDMARD in people with rheumatoid arthritis (RA), axial spondyloarthritis (AxSpA) and psoriatic arthritis (PsA) who have achieved a low disease activity state or remission. The recommendations form part of the Australian Living Guideline for the Pharmacological Management of Inflammatory Arthritis, an NHMRC‐endorsed ‘living’ guideline, in which recommendations are updated in near real‐time as new evidence emerges. Conditional recommendations were made in favour of dose reduction in RA and AxSpA but not in PsA. Abrupt discontinuation of b/tsDMARD is not recommended in any of the three diseases.
Publisher: Ovid Technologies (Wolters Kluwer Health)
Date: 06-04-2022
DOI: 10.1097/J.PAIN.0000000000002647
Abstract: What are the care-seeking priorities of people living with chronic pain and carers and how can these shape interdisciplinary workforce training to improve high-value pain care? Phase 1: Australian people living with chronic pain (n = 206 90% female) and carers (n = 10 40% female) described their pain care priorities (eDelphi, round 1). A coding framework was inductively derived from 842 pain care priorities (9 categories, 52 priorities), including validation communication multidisciplinary approaches holistic care partnerships practitioner knowledge self-management medicines and diagnosis. Phase 2: In eDelphi round 2, panellists (n = 170 valid responses) rated the importance (1 = less important 9 = more important) of the represented framework. In parallel, cross-discipline health professionals (n = 267 75% female) rated the importance of these same priorities. Applying the RAND-UCLA method (panel medians: 1-3: “not important,” 4-6: “equivocal,” or 7-9: “important”), “important” items were retained where the panel median score was with panel agreement ≥70%, with 44 items (84.6%) retained. Specific workforce training targets included the following: empathic validation effective, respectful, safe communication and ensuring genuine partnerships in coplanning personalised care. Panellists and health professionals agreed or strongly agreed (95.7% and 95.2%, respectively) that this framework meaningfully reflected the importance in care seeking for pain. More than 74% of health professionals were fairly or extremely confident in their ability to support care priorities for 6 of 9 categories (66.7%). Phase 3: An interdisciplinary panel (n = 5) mapped an existing foundation-level workforce training program against the framework, identifying gaps and training targets. Recommendations were determined for framework adoption to genuinely shape, from a partnership perspective, Australian interdisciplinary pain training.
Publisher: The Journal of Rheumatology
Date: 15-02-2019
Abstract: The current Juvenile Idiopathic Arthritis (JIA) Core Set used in randomized controlled trials (RCT) and longitudinal observational studies (LOS) was developed without the input of patients arents. At the Outcome Measures in Rheumatology (OMERACT) 2016, a special interest group voted to reconsider the core set, incorporating broader input. We describe subsequent work culminating in an OMERACT 2018 plenary and consensus voting. Candidate domains were identified through literature review, qualitative surveys, and online discussion boards (ODB) held with patients with JIA and parents in Australia, Italy, and the United States. A Delphi process with parents, patients, healthcare providers, researchers, and regulators served to edit the domain list and prioritize candidate domains. After the presentation of results, OMERACT workshop participants voted, with consensus set at > 70%. Participants in ODB were 53 patients with JIA (ages 15-24 yrs) and 55 parents. Three rounds of Delphi considering 27 domains were completed by 190 (response rate 85%), 201 (84%), and 182 (77%) people, respectively, from 50 countries. There was discordance noted between domains prioritized by patients arents compared to others. OMERACT conference voting approved domains for JIA RCT and LOS with 83% endorsement. Mandatory domains are pain, joint inflammatory signs, activity limitation hysical function, patient's perception of disease activity (overall well-being), and adverse events. Mandatory in specific circumstances: inflammation/other features relevant to specific JIA categories. Following the OMERACT methodology, we developed an updated JIA Core Domain Set. Next steps are to identify and systematically evaluate best outcome measures for these domains.
Publisher: The Journal of Rheumatology
Date: 04-2019
Abstract: Establishing a research agenda on standardizing pain measurement in clinical trials in rheumatic and musculoskeletal diseases (RMD). Discussion during a meeting at the Outcome Measures in Rheumatology (OMERACT) 2018, prepared by a systematic review of existing core outcome sets and a patient online survey. Several key questions were debated: Is pain a symptom or a disease? Are pain core (sub)domains consistent across RMD? How to account for pain mechanistic descriptors (e.g., central sensitization) in pain measurement? Characterizing and assessing the spectrum of pain experience across RMD in a standardized fashion is the objective of the OMERACT Pain Working Group.
Publisher: SAGE Publications
Date: 18-09-2022
DOI: 10.1177/00048674221125597
Abstract: This study investigated research capacity and culture in people with lived experience of mental health challenges by developing a quantitative tool that measures capacity to engage in research. A cross-sectional, correlational methodology was employed, which comprised of three phases: lived experience consultations for item development ( n = 15), item refinement ( n = 20) and tool piloting. Items were adapted from, and extended, an existing research capacity and culture tool for healthcare workers. People ( N = 112) with lived experience as mental health consumers, carers, peer workers and/or advocates aged 18–75 years took part in the tool piloting survey. Overall, participants rated their in idual research capacity and culture skills as moderate (mean = 5.41, standard deviation = 2.04). The most commonly reported barriers to research engagement related to lack of knowledge, familiarity or experience with the research process. The most commonly reported enablers were altruistic, such as using their experiences to improve services and help others. Research capacity and culture significantly correlated with current research activities ( rs = 0.25–0.41 ps 0.05), but not with being a research participant ( r = 0.09 p 0.05), suggesting that building research capacity of people with lived experience requires them to be active members of research teams. The Lived Experience research capacity and culture tool developed in this study revealed that people with lived experience of mental health challenges are intrinsically motivated to engage in research to improve consumer outcomes. The tool may be useful to assess self, research team and organisational preparedness to conduct genuinely co-designed research, and to assess changes in lived experience research capacities and culture over time.
Publisher: BMJ
Date: 06-2021
DOI: 10.1136/BMJGH-2021-006045
Abstract: Despite the profound burden of disease, a strategic global response to optimise musculoskeletal (MSK) health and guide national-level health systems strengthening priorities remains absent. Auspiced by the Global Alliance for Musculoskeletal Health (G-MUSC), we aimed to empirically derive requisite priorities and components of a strategic response to guide global and national-level action on MSK health. Design: mixed-methods, three-phase design. Phase 1: qualitative study with international key informants (KIs), including patient representatives and people with lived experience. KIs characterised the contemporary landscape for MSK health and priorities for a global strategic response. Phase 2: scoping review of national health policies to identify contemporary MSK policy trends and foci. Phase 3: informed by phases 1–2, was a global eDelphi where multisectoral panellists rated and iterated a framework of priorities and detailed components/actions. Phase 1: 31 KIs representing 25 organisations were s led from 20 countries (40% low and middle income (LMIC)). Inductively derived themes were used to construct a logic model to underpin latter phases, consisting of five guiding principles, eight strategic priority areas and seven accelerators for action. Phase 2: of the 165 documents identified, 41 (24.8%) from 22 countries (88% high-income countries) and 2 regions met the inclusion criteria. Eight overarching policy themes, supported by 47 subthemes, were derived, aligning closely with the logic model. Phase 3: 674 panellists from 72 countries (46% LMICs) participated in round 1 and 439 (65%) in round 2 of the eDelphi. Fifty-nine components were retained with 10 (17%) identified as essential for health systems. 97.6% and 94.8% agreed or strongly agreed the framework was valuable and credible, respectively, for health systems strengthening. An empirically derived framework, co-designed and strongly supported by multisectoral stakeholders, can now be used as a blueprint for global and country-level responses to improve MSK health and prioritise system strengthening initiatives.
Publisher: The Journal of Rheumatology
Date: 08-1201
Abstract: This report summarizes the proceedings of the first Outcome Measures in Rheumatology Clinical Trials (OMERACT) Health Literacy Special Interest Group workshop at the OMERACT 10 conference. Health literacy refers to an in idual’s capacity to seek, understand, and use health information. Discussion centered on the relevance of health literacy to the rheumatology field whether measures of health literacy were important in the context of clinical trials and routine care and, if so, whether disease-specific measures were required. A nominal group process involving 27 workshop participants, comprising a patient group (n = 12) and a healthcare professional and researcher group (n = 15), confirmed that health literacy encompasses a broad range of concepts and skills that existing scales do not measure. It identified the importance and relevance of patient abilities and characteristics, but also health professional factors and broader contextual factors. Sixteen themes were identified: access to information cognitive capacity disease expression/communication finances health professionals health system information literacy/numeracy management skills medication patient approach dealing with problems psychological characteristics social supports and time. Each of these was ided further into subthemes of one or more of the following: knowledge, attitude, attribute, relationship, skill, action, or context. There were virtually no musculoskeletal-specific statements, suggesting that a generic health literacy tool in rheumatology is justified. The detailed concepts across themes provided new and systematic insight into what needs to be done to improve health literacy and consequently reduce health inequalities. These data will be used to derive a more comprehensive measure of health literacy.
No related grants have been discovered for Ben Horgan.