Medical Research Future Fund. Aboriginal and Torres Strait Islander Ear Health Research Roadmap Proposal

Transcription

1 Medical Research Future Fund Aboriginal and Torres Strait Islander Ear Health Research Roadmap Proposal

2 Contents Background 3 Objectives 4 Rationale 6 Key principles 8 Roadmap 8 Governance and implementation 10 2 Medical Research Future Fund

3 Background Hearing loss contributes to disadvantage across the lifespan. Middle ear disease, specifically otitis media (OM), is the largest cause of preventable hearing loss. In Australia, Aboriginal and Torres Strait Islander children have the highest rates of OM in the world. 1 Nine out of 10 young Indigenous children who live in remote communities have some form of ear disease, and many have perforated eardrum(s). 2,3 In urban settings severe disease is less common but the prevalence of middle ear disease is still significant. Hearing loss has a detrimental influence on quality of life, employment, cultural connectedness and overall economic output. While Aboriginal and Torres Strait Islanders are known to have higher rates of ear disease and hearing loss, a lack of quality data makes it difficult to accurately estimate prevalence at a population level, not to mention the flow on effects in life trajectories. In , hearing loss was present in 49 per cent of young Indigenous people in the Northern Territory who received audiology services. 4 In 2018, a consortium of Aboriginal and Torres Strait Islander community leaders, surgeons, researchers, paediatricians, physicians, immunologists, infectious disease experts, audiologists, and policy developers gathered to determine what was required to measure the incidence and prevalence of OM and hearing loss in children, and change the negative influence of hearing loss on Aboriginal and Torres Strait Islander communities and life opportunities. Hearing health must be treated as a national health priority and we must do so much more to respond to Indigenous hearing health. It is no exaggeration to describe Indigenous hearing health as at a crisis. (p.iv) The evidence is clear, regardless of the age or background of the people they affect, hearing impairment and balance disorders have significant social and economic impacts. These impacts can be lessened, however, if they are diagnosed and treated as early as possible. (p.v) Inquiry into the Hearing Health and Wellbeing of Australia Still Waiting to be Heard Aboriginal and Torres Strait Islander Ear Health proposal 3

4 Objectives Mission: Halt the burden of hearing loss by 2025 and reduce the burden by 20% by The three objectives for attaining this mission: Halve the annual incidence of OM in Aboriginal and Torres Strait Islander children. > Halt the prevalence of hearing loss and therefore improve life opportunities for Aboriginal and Torres Strait Islander people. > Reduce the negative influence of hearing loss on Aboriginal and Torres Strait Islander people through family and community health care delivery and technology integration. 4 Medical Research Future Fund

5 Meeting these objectives will close the gap in developmental, educational, social, economic and cultural disadvantage associated with the high prevalence of OM in children and preventable/ treatable hearing loss in Aboriginal and Torres Strait Islander populations. Aboriginal and Torres Strait Islander Ear Health proposal 5

6 Rationale There is a clear rationale for addressing hearing loss in Aboriginal and Torres Strait Islanders: The burden of OM is disproportionately borne by Aboriginal and Torres Strait Islander communities, despite Australia having world class health services available OM in children can have a cascading negative developmental and economic influence Research needs to be coordinated and directed for a step change to occur OM is highest in Aboriginal and Torres Strait Islander communities Higher rates of OM among Aboriginal and Torres Strait Islander children is attributed to early nasopharyngeal bacterial colonisation, chronic upper respiratory tract infections and social factors such as poverty, overcrowding, poor house maintenance, and exposure to cigarette smoke. 5 Furthermore, the disease is the result of a mix of biological, environmental and host risk factors that interact in complex, non-linear ways along a dynamic continuum. 6 Social disparity also becomes a determinant of ear health acting both independently and through its influence on behavioural determinants of health. It is imperative to ensure any roadmap designed is underpinned by addressing the social determinants of health. Thus, increasing awareness of ear health issues in schools is a key rationale for investing in research to determine the best way of assisting teachers and health care workers to understand associated consequences. 7 Finally, epidemiological studies that have sought to identify risk factors for middle ear disease in Aboriginal and Torres Strait Islander communities have yielded varied findings. 8 9 Most of this research has been confined to populations residing in rural or remote communities; however, Australian Aboriginal and Torres Strait Islander peoples now predominantly live in urban areas, with 53% living in major cities or regional centres. 10 An ongoing study investigating prevalence and risk factors of OM in Aboriginal infants living in Perth, Western Australia has found that ~50% have middle ear effusion at six months of age (Pers comm D Lehmann, Telethon Kids Institute 10 October 2018). Hearing loss in children has a significant developmental and economic impact Hearing loss not only has negative social and physical influences on Aboriginal and Torres Strait Islander children and their communities but has profound economic and social effects on all Australians. Persistent hearing loss can negatively influence the child s development of speech, language, cognitive and social skills, and subsequently their confidence. This, in turn, can diminish educational outcomes and increase behavioural problems. Children with early onset, persistent, bilateral OM with effusion and hearing loss (or speech delay) are most likely to benefit from the earliest possible interventions. 11 If there are delays in hearing support the children may be at a life-long social and economic disadvantage, 12 which in turn will perpetuate other societal issues that take a toll on families, local communities and governments. Contact with the criminal justice system provides a valuable opportunity to detect and address health conditions experienced by detainees/prisoners. Limited data available from a 2011 Northern Territory study found that 94 per cent of the Aboriginal inmates tested were found to have significant hearing loss. 13 Clinical features of OM in children include concurrent or preceding upper respiratory tract infection, hearing loss and aural fullness. Severe behavioural consequences include inattentive, noncompliant, 6 Medical Research Future Fund

7 challenging behaviour, nocturnal wakefulness and clumsiness. 13 The economic burden of OM in Aboriginal or Torres Strait Islander people is typically included in total population statistics. However, one report states, the net cost of lost wellbeing due to middle ear disease in 2008 was estimated to be $1.05 billion for the minimum estimate of cases and $2.6 billion for the high estimate of cases. 14 Therefore, research into the cascading influences of hearing loss on education, health, employment and general wellbeing, and baselining incidence and prevalence will be key parts of a future research road map. Research needs to be coordinated and directed for a step change to occur There is significant evidence for greater research outcomes to come from coordinated and directed research. The Medical Research Future Fund was established with this clearly in mind and takes the NH&MRC Program Grant scheme to the next level. Furthermore, it builds on successful approaches to other wicked health problems and diseases from communicable diseases through to brain cancer with the Cure Brain Cancer Foundation and Huntington s Disease through the CHDI Foundation. 15 These approaches are known to deliver more significantly and have more rapid impact on their research targets than investigator led research projects alone. Aboriginal and Torres Strait Islander Ear Health proposal 7

8 Key principles Roadmap A number of key principles are proposed to guide the research and its operationalisation: Research will be prioritised if it is for the improvement of Aboriginal and Torres Strait Islander hearing health, with particular reference to outcomes. Research must build the capacity for Aboriginal and Torres Strait Islander active participation in and leadership of research and health projects. Family and community involvement from the outset within the research and health care. Research will be prioritised if it facilitates or assists with the professional development of the education and health workforce. Innovation and research focused on access to health care and intervention, and the economic benefits of intervention and prevention will be prioritised. Research that seeks to connect families and schools in the education of Aboriginal and Torres Strait Islander ear and hearing health will be funded. Research must focus not only on ear and hearing health but also issues perpetuated by poor ear and hearing health. Equity of care and research access regardless of social, economic or geographic circumstance is vital. Investment must focus on the best ideas and talent, and opportunities for impact in significantly reducing the burden of severe disease and its consequences. The consortium proposes a research framework that responds to the complex problem of Aboriginal and Torres Strait Islander hearing loss with systems thinking approaches to research prevention, screening, surveillance, diagnosis, treatment, care and support. Importantly, research conducted must be culturally appropriate and evidence-based. The frame is presented as a lifecycle where research investment in the earliest life stages, if implemented, would have the greatest and longest-term impact on the individual and their community. These include: Healthy start (0-3 years) Healthy development (4-5 years) School readiness (5-12 years) School success (13-25 years) Thriving adults (25-49 years) Active and connected (50 years and over) Similarly, research should align with: Detection Early detection, screening and surveillance of ear and hearing health and language and communication development through best practice data collection, reporting and predictive analysis. Intervention Education Workforce Interventions targeting individual hearing loss prevention or treatment (including vaccines) and interventions targeting hearing loss management and language development with broader supportive impact through family, community and our health system. Education and health promotion research to promote ear and hearing health, communication and social participation, and reduce risk. Workforce capability, capacity and its organisation in urban, rural and remote communities to achieve the best hearing health, communication and social outcomes. Initiatives that would kick-start this coordinated research program are presented opposite. 8 Medical Research Future Fund

9 Establish a National Ear Health dataset and framework in partnership with leading health bodies and Detection Early detection, screening and surveillance of of ear and hearing health through best practice data collection, reporting and predictive analysis. Establish a National Ear Health dataset and framework in partnership with leading health bodies and leverage the My Health Record and National Children s Digital Health Collaborative initiatives. The existence of of a robust dataset enables further research and insight into systematic effects of of hearing loss and intervention return on on investment. Systematic review of of smart device applications that enable remote and mobile screening and surveillance. In In partnership with industry, research and develop smart applications that integrate with existing technology where gaps exist, enhancing health pathways.. Evaluation of of health, education, and justice systems effectiveness and efficiency at at addressing hearing health and communication abilities in in Aboriginal and Torres Strait Islander people. Healthy start start Healthy School development readiness School success Thriving adults adults Healthy ageing (0-3 (0-3 years) (4-5 (4-5 years) (5-12 (5-12 years) (13-25 (13-25 years) years) (25-49 (25-49 years) years) (25-49 (50+ years) 4 Develop an investment framework for new technologies and artificial intelligence solutions for for screening, image analysis, telehealth and potential treatments in in urban and remote settings. 5 Investigate the effectiveness and cost-effectiveness of of early detection and intervention. Intervention 1 Commission a longitudinal health economics study to to track the outcomes of of poor hearing health and effective interventions. 2 Commission a longitudinal study to to determine the effectiveness and cost-effectiveness of of early intervention for improving hearing, speech and language outcomes for Aboriginal & Torres Strait Islander children with hearing and/or communication problems. 3 Establish a clinical trials network and framework for the testing of: of: nutritional supplements, antibiotics, vaccines, novel therapies including dornase alfa and other biofilm disruptors, public health interventions, speech therapy, and personal hearing devices. 4 Establish a surgical trials network and conduct research into surgical interventions for for conductive hearing loss, their appropriateness, impact on on daily life, development and outcomes. 5 Research clinical care guidelines, management and culturally sensitive communication of of OM, including the benefits of of innovative models of of care utilising Indigenous community champions and home-based care. 6 Research the effectiveness of of different models of of care, including the the use of of Indigenous community champions and home-based care. 7 Conduct an an intervention study of of the impact of of improving hearing in in children in in the the juvenile justice system. Education Education and health promotion research promotes hearing health, interventions, use use of of technology and and reduces risk. Research school-based interventions including training, equipment, room set set up up etc etc that that best address for learning for people with hearing loss. 1 2 Research and develop guidelines and methods for for the the communication and and engagement of of people in in ear ear and hearing health, including the the use use of of story, songlines and and other culturally appropriate approaches. 3 Investigate the the best professional development opportunities for for the the education of of the the health care care workforce about ear ear and hearing health, research, and and data data collection. 4 Investigate practices for for embedding ear ear and and hearing health professionals physically or or virtually in in communities. For For example, embedding audiologists in in ACCHOs, and and use use of of telehealth for for AHWs. 5 Research the the usefulness of of various health promotion campaigns for for changing behaviours to to understand what works best best in in the the current mixed media landscape of of TV, TV, social, web, web, etc. etc. 6 Develop and and test test the the useability of of a a mobile phone phone application for for the the OM OM Guidelines with with target target user user groups. Workforce Conduct research through through surveys surveys and and needs needs analyses analyses to to understand capability, capability, competency, training training needs, and capacity of the and hearing health workforce, with particular reference to Aboriginal needs, and capacity of the education and hearing health workforce, with particular reference to Aboriginal 1 and and Torres Torres Strait Strait Islanders.. Aboriginal and Torres Strait Islander Ear Health proposal 9 Conduct Conduct research research that that addresses addresses identified identified needs needs of of the the education education and and hearing hearing health health workforce. workforce. 2

10 Governance and implementation There are four components to the governance of the Aboriginal and Torres Strait Islander Ear Health Consortium: 1 Governance Board Governance Board chaired by an Aboriginal or Torres Strait Islander person, with membership including the Lowitja Institute and NACCHO, and composed of a majority of Indigenous health leaders to set the direction, principles and priorities for addressing Aboriginal and Torres Strait Islander ear and hearing health. This Board will also be responsible for the collection and reporting of metrics and KPIs to Government. 2 Community Consultation Forum 3 Scientific Advisory Committee 4 Project Manager (Technical) Community Consultation Forum will meet regularly to discuss Aboriginal and Torres Strait Islander ear health and inform the strategic direction of the Consortium. Scientific Advisory Committee established to provide advice on the scientific merit and technical elements of allocating the funding to research projects and initiatives. This committee will include highly knowledgeable individuals that have engaged with Aboriginal and Torres Strait Islander ear health from a research and healthcare perspective and understand the intricacies of the impact of the research. Project Manager who will provide management, including support to the governance structure as well as receive and administer the funds as the granting body. 10 Medical Research Future Fund

11 Project development As part of the consortium s development of this research roadmap, a number of existing and potential projects have been identified that could be considered by the Scientific Advisory Committee following establishment. Some examples include: 1. A prospective longitudinal study of outcomes for children with significant hearing loss in a selection of remote communities, in partnership with ACCHOs, to investigate factors that improve outcomes. 2. Investigation of services available and rates of access eg access to early intervention speech language services under the National Disability Insurance Scheme. 3. Real time evaluation of the effectiveness of the $30 million investment in hearing health assessments from to Work already underway to develop national Key Performance Indicators for hearing health and the Hearing for Learning initiative will provide important insights for the program of work. Footnotes 1 Couzos, S., Metcalf, S., & Murray, R. B. (2001). Systematic review of existing evidence and primary care guidelines on the management of OMin Aboriginal and Torres Strait Islander populations: Report. Commonwealth Department of Health and Aged Care, Canberra, ACT, Australia. 2 Menzies School of Health Research. (2018). Ears. Retrieved from: development/ears/ 3 Leach, A.J., Wigger, C., Beissbarth, J., Woltring, D., Andrews, R., Chatfield, M.D., Smith-Vaughan, H., & Morris, P.S. (2016). General health, otitis media, nasopharyngeal carriage and middle ear microbiology in Northern Territory Aboriginal children vaccinated during consecutive periods of 10-valent or 13-valent pneumococcal conjugate vaccines. International Journal of Pediatric Otorhinolaryngology, 86, Still waiting to be heard... A report to the Parliament of the Commonwealth of Australia. Health_Aged_Care_and_Sport/HearingHealth/Report_1 5 Kong K., & Coates HL (2009) Natural history, definitions, risk factors and burden of otitis media. The Medical Journal of Australia 191, S39 S43. 6 Durham, J., Schubert, L., & Willis, C. (2018). Using systems thinking and the Intervention Level Framework to analyse public health planning for complex problems: OMin Aboriginal and Torres Strait Islander children. Plos One. Retrieved from: pone Gupta, D., Gulati, A., & Gupta, U. (2015). Impact of socio-economic status on ear health and behaviour in children: A cross-sectional study in the capital of India. International Journal of Paediatric Otorhinolaryngology, doi: /j.ijporl Jacoby, P., K. S. Carville, G. Hall, T. V. Riley, J. Bowman, A. J. Leach and D. Lehmann (2011). Crowding and other strong predictors of upper respiratory tract carriage of otitis media-related bacteria in Australian Aboriginal and non-aboriginal children. Pediatr Infect Dis J 30(6): Jacoby et al., 2008; Bailie et al., Australian Bureau of Statistics, Kong, K., Lannigan, F.J., Morris, P.S., Leach, A.J., O Leary, S.J. (2017). Ear, nose and throat surgery: All you need to know about the surgical approach to the management of middle-ear effusions in Australian Indigenous and non-indigenous children. Journal of Paediatrics and Child Health, 53, Ibid, p Vanderpoll T & Howard D (2012) Massive prevalence of hearing loss among Aboriginal inmates in the Northern Territory. Indigenous Law Bulletin January/ February 2012, Volume 7, Issue 28, p3 14 Ibid, p Deadly Ears Program, Children s Health Queensland Hospital. (No date.) Submission 62: Inquiry into the Hearing Health and Wellbeing of Australia. Retrieved from: 16 CHDI s goal is to increase the understanding of Huntington s disease (HD) and to hasten the development of therapies. Consultation Draft Version 2.1

12 For more information please contact