Moreover, insufficient researcher time, lack of funding, inadequate storage infrastructure and the fact that funders do not fully mandate open access to data 9 further hamper routine data sharing and global access to science. Simultaneously, a lack of international standards, regulations and incentives can also hinder the ability to share materials and data. Improving access to science, data and materialsĪccess to scientific knowledge, data and materials is limited in many parts of the world, with international restrictions interfering with the ability to share biosamples.
Funding agencies should strive to achieve a better balance by including underresearched aspects of dementia, such as conditions other than Alzheimer’s disease or dementia in highly vulnerable or marginalized populations. This can be facilitated by increased advocacy for resource allocation to dementia research, as well as the establishment of collaborations between funders to jointly develop funding calls. Given the chronic and often slowly progressive nature of dementia, continuous funding must be provided for comprehensive longitudinal research, which is often costly. The duration and continuity of funding are also crucial. The extent to which funders implement such recommendations can be monitored by measuring the proportion of awards being allocated to collaborations between HICs and LMICs in the design and execution of studies, as well as to researchers with geographical, gender and background underrepresentation. To address this imbalance, funding agencies can strategically allocate resources to LMICs towards building research capacity and infrastructure, and support the perennial development and training of a research workforce.
This discrepancy also results in research collaborations being predominantly established with other HIC institutions 8. Of the 50 organizations and institutions that received the most grants for dementia research in 2019, 41 were in the USA, 6 in the UK and 3 in Canada 8. Sustainable, adequate and equitable fundingĭementia research has been chronically underfunded and unevenly distributed. To promote diversity and inclusion of populations and communities who are traditionally less likely to participate in dementia research or are rarely covered by scientific studies (for example, epidemiological research), funders and research institutions can develop equity monitoring systems to ensure better representativeness and a fair distribution of resources. Funding bodies, for example, can increase the diversity of funding streams to reflect all priority areas and actively seek submissions that address inequities and promote equal partnerships between HICs and LMICs. The blueprint therefore outlines equity principles to be applied by funding bodies, regulatory authorities and the scientific community (such as fairness and equal participation in resource allocation and in representation in studies) that foster real, transparent research collaborations, decrease the power imbalance and dependence on HIC institutions, as well as increase research output and the representation of LMICs in global dementia research. Inequities also exist in terms of funding allocation, which negatively affects mostly women and researchers from LMICs 1. For instance, genetic data are mainly representative of populations of European origin 7. Traditionally, dementia research has been driven by and conducted in HICs. Concretely, the research community in partnership with civil society should develop, for example, programs that provide training in research and science so that people can contribute in a meaningful way and create processes that account for different levels of cognitive, sensory and physical impairment or disability. The blueprint therefore calls for the mandatory inclusion and active involvement of people with dementia and their carers. Data from WHO’s Global Dementia Observatory show that in almost 50% of countries, people with dementia are not at all involved in research 1. Globally, people with dementia are insufficiently involved in all stages of research, ranging from priority setting, planning and development of research proposals to knowledge translation and integration in policy. Including and empowering people with lived experience to achieve impact
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