Integrating consumer perspectives into a large-scale health literacy audit of health information materials: learnings and next steps.

BACKGROUND: Health information is less effective when it does not meet the health literacy needs of its consumers. For health organisations, assessing the appropriateness of their existing health information resources is a key step to addressing this issue. This study describes novel methods for a consumer-centred large-scale health literacy audit of existing resources and reflects on opportunities to further refine the method. METHODS: This audit focused on resources developed by NPS MedicineWise, an Australian not-for-profit that promotes safe and informed use of medicines. The audit comprised 4 stages, with consumers engaged at each stage: 1) Select a sample of resources for assessment; 2) Assess the sample using subjective (Patient Education Materials Assessment Tool) and objective (Sydney Health Literacy Lab Health Literacy Editor) assessment tools; 3) Review audit findings through workshops and identify priority areas for future work; 4) Reflect and gather feedback on the audit process via interviews. RESULTS: Of 147 resources, consumers selected 49 for detailed assessment that covered a range of health topics, health literacy skills, and formats, and which had varied web usage. Overall, 42 resources (85.7%) were assessed as easy to understand, but only 26 (53.1%) as easy to act on. A typical text was written at a grade 12 reading level and used the passive voice 6 times. About one in five words in a typical text were considered complex (19%). Workshops identified three key areas for action: make resources easier to understand and act on; consider the readers' context, needs, and skills; and improve inclusiveness and representation. Interviews with workshop attendees highlighted that audit methods could be further improved by setting clear expectations about the project rationale, objectives, and consumer roles; providing consumers with a simpler subjective health literacy assessment tool, and addressing issues related to diverse representation. CONCLUSIONS: This audit yielded valuable consumer-centred priorities for improving organisational health literacy with regards to updating a large existing database of health information resources. We also identified important opportunities to further refine the process. Study findings provide valuable practical insights that can inform organisational health actions for the upcoming Australian National Health Literacy Strategy.

Integrating consumer engagement in health and medical research - an Australian framework.

BACKGROUND: Quality practice of consumer engagement is still in its infancy in many sectors of medical research. The South Australian Health and Medical Research Institute (SAHMRI) identified, early in its development, the opportunity to integrate evidence-driven consumer and community engagement into its operations. PROCESS: SAHMRI partnered with Health Consumers Alliance and consumers in evidence generation. A Partnership Steering Committee of researchers and consumers was formed for the project. An iterative mixed-method qualitative process was used to generate a framework for consumer engagement. This process included a literature review followed by semi-structured interviews with experts in consumer engagement and lead medical researchers, group discussions and a consensus workshop with the Partnership Steering Committee, facilitated by Health Consumer Alliance. OUTCOMES: The literature revealed a dearth of evidence about effective consumer engagement methodologies. Four organisational dimensions are reported to contribute to success, namely governance, infrastructure, capacity and advocacy. Key themes identified through the stakeholder interviews included sustained leadership, tangible benefits, engagement strategies should be varied, resourcing, a moral dimension, and challenges. The consensus workshop produced a framework and tangible strategies. CONCLUSION: Comprehensive examples of consumer participation in health and medical research are limited. There are few documented studies of what techniques are effective. This evidence-driven framework, developed in collaboration with consumers, is being integrated in a health and medical research institute with diverse programs of research. This framework is offered as a contribution to the evidence base around meaningful consumer engagement and as a template for other research institutions to utilise.

Polyanalgesic Consensus Conference--2012: consensus on diagnosis, detection, and treatment of catheter-tip granulomas (inflammatory masses).

INTRODUCTION: Continuous intrathecal infusion of drugs to treat chronic pain and spasticity has become a standard part of the algorithm of care. The use of opioids has been associated with noninfectious inflammatory masses at the tip of the intrathecal catheter, which can result in neurologic complications. METHODS: The Polyanalgesic Consensus Conference is a meeting of a group of well-published and experienced practitioners; the purpose of the meeting is to update the standard of care for intrathecal therapies to reflect current knowledge gleaned from literature and clinical experience. An exhaustive literature search was performed, and information from this search was provided to panel members. Analysis of the published literature was coupled with the clinical experience of panel participants to form recommendations regarding intrathecal inflammatory masses or granulomas. RESULTS: The panel has made recommendations for the prevention, diagnosis, and management of intrathecal granulomas. CONCLUSION: The use of chronic infusions of intrathecal opioids is associated with the formation of inflammatory masses at the intrathecal catheter tip in a small minority of treated patients. Nonetheless, the appearance of these space-occupying lesions can lead to devastating neurologic sequelae. The prevention, early detection, and successful treatment of intraspinal granulomas are important considerations when offering intrathecal drug therapy to patients with chronic intractable pain.

Consumer engagement in health care policy, research and services: A systematic review and meta-analysis of methods and effects.

To assess the effects of consumer engagement in health care policy, research and services. We updated a review published in 2006 and 2009 and revised the previous search strategies for key databases (The Cochrane Central Register of Controlled Trials; MEDLINE; EMBASE; PsycINFO; CINAHL; Web of Science) up to February 2020. Selection criteria included randomised controlled trials assessing consumer engagement in developing health care policy, research, or health services. The International Association for Public Participation, Spectrum of Public Participation was used to identify, describe, compare and analyse consumer engagement. Outcome measures were effects on people; effects on the policy/research/health care services; or process outcomes. We included 23 randomised controlled trials with a moderate or high risk of bias, involving 136,265 participants. Most consumer engagement strategies adopted a consultative approach during the development phase of interventions, targeted to health services. Based on four large cluster-randomised controlled trials, there is evidence that consumer engagement in the development and delivery of health services to enhance the care of pregnant women results in a reduction in neonatal, but not maternal, mortality. From other trials, there is evidence that involving consumers in developing patient information material results in material that is more relevant, readable and understandable for patients, and can improve knowledge. Mixed effects are reported of consumer-engagement on the development and/or implementation of health professional training. There is some evidence that using consumer interviewers instead of staff in satisfaction surveys can have a small influence on the results. There is some evidence that consumers may have a role in identifying a broader range of health care priorities that are complementary to those from professionals. There is some evidence that consumer engagement in monitoring and evaluating health services may impact perceptions of patient safety or quality of life. There is growing evidence from randomised controlled trials of the effects of consumer engagement on the relevance and positive outcomes of health policy, research and services. Health care consumers, providers, researchers and funders should continue to employ evidence-informed consumer engagement in their jurisdictions, with embedded evaluation. Systematic review registration: PROSPERO CRD42018102595.

Intrathecal catheter granuloma associated with isolated baclofen infusion.

Intrathecal (IT) baclofen is an effective management strategy for controlling spasticity in patients unresponsive to maximal oral therapy. We present the case of a 57-yr-old woman who was rendered quadriplegic after a complete spinal cord transection at the C6 level. Her course was complicated by severe spasms, which were uncontrolled despite titrating orally administered baclofen to 80 mg/d. IT baclofen testing was performed with good response, and administration was commenced via an implanted intrathecal pump 6 mo after the injury at an initial dose of 200 microg/d. Catheter revision was required 2 wk later as a result of catheter displacement. The initial IT baclofen dose was gradually increased to achieve good control at a level of 400 microg/d. After a period of stability lasting 38 mo, her lower limb spasms dramatically increased in severity and remained poorly controlled despite repeated dose increases. Contrast pumpogram and computed tomography myelogram were performed to exclude a mechanical cause for this apparent increase in baclofen requirement. These investigations revealed neither catheter displacement nor fracture as suspected but, rather, displayed the presence of a catheter tip-associated mass. Catheter tip granuloma has not previously been described in a patient receiving IT baclofen alone. This suggests that although uncommon, the possibility of catheter-associated granuloma must be considered in all patients receiving IT baclofen presenting with altered neurological function or significant increase in drug requirement.

Helping medical specialists working in rural and remote Australia deal with professional isolation: the Support Scheme for Rural Specialists.

There are well documented geographical, financial, social and professional barriers to continuing professional development (CPD) and peer support for rural medical practitioners, which significantly influence the recruitment and retention of health care professionals in rural areas. The Support Scheme for Rural Specialists (SSRS) provides a coordinated and collaborative framework to support the CPD and peer-support needs of medical specialists practising in rural and remote Australia. Since 2002, more than 80 CPD projects have been implemented by specialist medical colleges under the auspices of the SSRS. Projects have provided educational up-skilling or support for rural-specific clinical practice improvement initiatives aimed at strengthening clinician competence and capability, and workforce retention.