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"Macklin, Heather"
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Equity of access in rural and metropolitan dementia diagnosis, management, and care experiences: an exploratory qualitative study
2025
Background
The limited allocation of resources to rural and regional communities is a major contributor to healthcare inequities in Australia. Distribution of health service resources between metropolitan and rural communities commonly sees highly populated areas prioritised over more sparsely populated and geographically vast areas. As such, challenges impacting dementia diagnosis, management, and care in metropolitan areas are experienced more acutely in rural areas. This study aimed to examine equity of access to dementia diagnosis, management, and care services amongst people who experienced the process of dementia diagnosis as a patient or significant other (partner/spouse, adult children, siblings, and friends) throughout rural and metropolitan Australia.
Methods
This exploratory qualitative study consisted of thirty-three online semi-structured interviews with thirty-seven people with experience of the dementia diagnosis process as a patient and/or significant other. Interviews explored symptoms of dementia, health professionals consulted, tests conducted, and challenges faced throughout the diagnosis and post-diagnosis process. Rurality was defined by the Australian Statistical Geography Standard Remoteness Areas (ASGS-RA) and the Modified Monash Model (MMM). Thematic analysis was conducted, with Russell’s (2013) Dimensions of Access framework (geography, affordability, availability, acceptability, accommodation, awareness, and timeliness) guiding data analysis.
Results
Participants were distributed across various regions of Australia: seven interviews from inner regional Australia, five interviews from outer regional Australia, and twenty-one interviews from metropolitan areas. Disparities in access between metropolitan and rural areas emerged in five key dimensions: 1) geography impeding ability to access services; 2) affordability of travel expenses; 3) availability of healthcare and support services; 4) acceptability of available health professionals and services; and 5) awareness of local services and resources. The dimensions of accommodation and timeliness of care were experienced as challenges irrespective of location, with lengthy appointment wait times and difficulty navigating complex systems. However, rurality often compounded the challenges in dementia diagnosis, management, and care.
Conclusions
Significant health inequities persist between rural and metropolitan communities that must be prioritised in endeavours to promote equitable dementia diagnosis, management, and care. Targeted action to address disparities is vital to mitigate the impact of rurality, particularly as clinical practice evolves with research advancements.
Journal Article
Voters' choices
2002
Perhaps the results of this latest round of statewide elections will finally force the Illinois Republican Party to take a long, hard, honest look at what it has become.
Newspaper Article
Multiparameter persistent homology landscapes identify immune cell spatial patterns in tumors
by
Bull, Joshua A.
,
Tillmann, Ulrike
,
Pugh, Christopher W.
in
Applied Mathematics
,
Biological Sciences
,
Biophysics and Computational Biology
2021
Highly resolved spatial data of complex systems encode rich and nonlinear information. Quantification of heterogeneous and noisy data—often with outliers, artifacts, and mislabeled points—such as those from tissues, remains a challenge. The mathematical field that extracts information from the shape of data, topological data analysis (TDA), has expanded its capability for analyzing real-world datasets in recent years by extending theory, statistics, and computation. An extension to the standard theory to handle heterogeneous data is multiparameter persistent homology (MPH). Here we provide an application of MPH landscapes, a statistical tool with theoretical underpinnings. MPH landscapes, computed for (noisy) data from agent-based model simulations of immune cells infiltrating into a spheroid, are shown to surpass existing spatial statistics and one-parameter persistent homology. We then apply MPH landscapes to study immune cell location in digital histology images from head and neck cancer. We quantify intratumoral immune cells and find that infiltrating regulatory T cells have more prominent voids in their spatial patterns than macrophages. Finally, we consider how TDA can integrate and interrogate data of different types and scales, e.g., immune cell locations and regions with differing levels of oxygenation. This work highlights the power of MPH landscapes for quantifying, characterizing, and comparing features within the tumor microenvironment in synthetic and real datasets.
Journal Article
Cardiovascular disease management and healthcare delivery for people experiencing homelessness: a scoping review
by
Samson, Bethel
,
Pinto, Andrew
,
Gibson, Jennifer L.
in
Affordable housing
,
Canada
,
Cardiovascular disease
2024
Background
People experiencing homelessness have increased prevalence, morbidity, and mortality of cardiovascular disease (CVD), attributable to several traditional and non-traditional risk factors. While this burden is well-known, mainstream CVD management plans and healthcare delivery have not been developed with people experiencing homelessness in mind nor tailored to their unique context. The overall objective of this work was to explore and synthesize what is known about CVD management experiences, programs, interventions, and/or recommendations specifically for people experiencing homelessness.
Methods
We conducted a scoping review to combine qualitative and quantitative studies in a single review using the Arksey and O’Malley framework and lived experience participation. We performed a comprehensive search of OVID Medline, Embase, PsychINFO, CINAHL, Web of Science, Social Sciences Index, Cochrane, and the grey literature with key search terms for
homelessness
,
cardiovascular disease
, and
programs
. All dates, geographic locations, and study designs were included. Articles were analyzed using conventional content analysis.
Results
We included 37 articles in this review. Most of the work was done in the USA. We synthesized articles’ findings into 1) barriers/challenges faced by people experiencing homelessness and their providers with CVD management and care delivery (competing priorities, lifestyle challenges, medication adherence, access to care, and discrimination), 2) seven international programs/interventions that have been developed for people experiencing homelessness and CVD management with learnings, and 3) practical recommendations and possible solutions at the patient encounter level (relationships, appointment priorities, lifestyle, medication), clinic organization level (scheduling, location, equipment, and multi-disciplinary partnership), and systems level (root cause of homelessness, and cultural safety).
Conclusions
There is no ‘one-size-fits all’ approach to CVD management for people experiencing homelessness, and it is met with complexity, diversity, and intersectionality based on various contexts. It is clear, however, we need to move to more practically-implemented, community-driven solutions with lived experience and community partnership at the core. Future work includes tackling the root cause of homelessness with affordable housing, exploring ways to bring cardiac specialist care to the community, and investigating the role of digital technology as an avenue for CVD management in the homeless community. We hope this review is valuable in providing knowledge gaps and future direction for health care providers, health services research teams, and community organizations.
Journal Article
A Prospective Study of the Concordance of DSM-IV and DSM-5 Diagnostic Criteria for Autism Spectrum Disorder
by
Macklin, Eric A.
,
Poulsen, Marie
,
Mazurek, Micah O.
in
Age Differences
,
Asperger Syndrome
,
Asperger's syndrome
2017
The transition from DSM-IV to DSM-5 criteria for autism spectrum disorder (ASD) sparked considerable concern about the potential implications of these changes. This study was designed to address limitations of prior studies by prospectively examining the concordance of DSM-IV and final DSM-5 criteria on a consecutive sample of 439 children referred for autism diagnostic evaluations. Concordance and discordance were assessed using a consistent diagnostic battery. DSM-5 criteria demonstrated excellent overall specificity and good sensitivity relative to DSM-IV criteria. Sensitivity and specificity were strongest for children meeting DSM-IV criteria for autistic disorder, but poor for those meeting criteria for Asperger’s disorder and pervasive developmental disorder. Higher IQ, older age, female sex, and less pronounced ASD symptoms were associated with greater discordance.
Journal Article
OTO: Ontology Term Organizer
by
Cui, Hong
,
Macklin, James A
,
Cole, Heather A
in
Algorithms
,
Bioinformatics
,
Biomedical and Life Sciences
2015
Background
The need to create controlled vocabularies such as ontologies for knowledge organization and access has been widely recognized in various domains. Despite the indispensable need of thorough domain knowledge in ontology construction, most software tools for ontology construction are designed for knowledge engineers and not for domain experts to use. The differences in the opinions of different domain experts and in the terminology usages in source literature are rarely addressed by existing software.
Methods
OTO software was developed based on the Agile principles. Through iterations of software release and user feedback, new features are added and existing features modified to make the tool more intuitive and efficient to use for small and large data sets. The software is open source and built in Java.
Results
Ontology Term Organizer (OTO;
http://biosemantics.arizona.edu/OTO/
) is a user-friendly, web-based, consensus-promoting, open source application for organizing domain terms by dragging and dropping terms to appropriate locations. The application is designed for users with specific domain knowledge such as biology but not in-depth ontology construction skills. Specifically OTO can be used to establish is_a, part_of, synonym, and order relationships among terms in any domain that reflects the terminology usage in source literature and based on multiple experts’ opinions. The organized terms may be fed into formal ontologies to boost their coverage. All datasets organized on OTO are publicly available.
Conclusion
OTO has been used to organize the terms extracted from thirty volumes of Flora of North America and Flora of China combined, in addition to some smaller datasets of different taxon groups. User feedback indicates that the tool is efficient and user friendly. Being open source software, the application can be modified to fit varied term organization needs for different domains.
Journal Article
Building the \Plant Glossary\—A controlled botanical vocabulary using terms extracted from the Floras of North America and China
2017
Taxonomic descriptions contain valuable phenotypic data that is often not directly accessible for modern evolutionary, ecological, or biodiversity analyses. We describe a process for building a consensus-based controlled vocabulary from taxonomic descriptions for plants, which also can be applied for building controlled vocabularies for other taxon groups. Controlled vocabularies are useful as lexicons for text mining algorithms, as source of candidate terms for ontologies, and as guides to help future authors use domain vocabulary more appropriately and consistently. We extracted phenotypedescribing phrases terms from descriptions of 30 volumes of the Flora of North America and Flora of China and merged these with terms from the Categorical Glossary of the Flora of North America. Seven contributors placed the terms into a set of categories until there was an agreement among two or more categorizations per term. Term categorization makes the meaning of a term more explicit for the subsequent users of the glossary. The resulting \"Plant Glossary\" (terms and categorization of terms) contains 9228 terms grouped in 53 categories. Differences in term categorization represented 49% of the categorization effort, and the many differences among individual classifications can be attributed to individual interpretation of terms and to the fluid nature of descriptive language used in Floras. The difficulties experienced while classifying the terms allowed us to explore cases where the use of language can hinder the accurate and detailed annotation of taxonomic descriptions. The Plant Glossary represents a significant step towards creating and enriching formal ontologies for plant phenotypes as the semantic phenomena found through this exercise is useful background information for building ontologies. The glossary has been used by new software to parse and annotate plant taxonomic descriptions, and over 6000 new terms are available for creating ontologies.
Journal Article
Overview of The Canadian Clinician Investigator Trainees’ Research Presented at The 2020 CSCI-CITAC Joint Meeting
by
Saint-Georges, Zacharie
,
Jomaa, Danny
,
Bogie, Bryce J. M.
in
Biomedical Research
,
Canada
,
Congresses as Topic
2021
The 2020 Annual General Meeting (AGM) and Young Investigators’ Forum of the Canadian Society for Clinical Investigation / Société Canadienne de Recherches Clinique (CSCI/SCRC) and Clinician Investigator Trainee Association of Canada/Association des Cliniciens-Chercheurs en Formation du Canada (CITAC/ACCFC) was the first meeting to be hosted virtually. The theme was “Navigating Uncertainty, Embracing Change and Empowering the Next Generation of Clinician-Scientists”, and the meeting featured lectures and workshops that were designed to provide knowledge and skills for professional development of clinician investigator trainees. The opening remarks were given by Jason Berman (President of CSCI/SCRC), Tina Marvasti (President of CITAC/ACCFC) and Nicola Jones (University of Toronto Clinician Investigator Program Symposium Chair). Dr. Michael Strong, President of the Canadian Institutes of Health Research, delivered the keynote presentation titled “CIHR’s COVID-19 Response and Strategic Planning”. Dr. John Bell (University of Ottawa) received the CSCI Distinguished Scientist Award, Dr. Stanley Nattel (Université de Montréal) received the CSCI-RCPSC Henry Friesen Award (RCPSC; Royal College of Physicians and Surgeons of Canada) and Dr. Meghan Azad (University of Manitoba) received the CSCI Joe Doupe Young Investigator Award. Each scientist delivered talks on their award-winning research. The interactive workshops were “Developing Strategies to Maintain Wellness”, “Understanding the Hidden Curriculum: Power and Privilege in Science and Medicine”, “Hiring a Clinician Scientist Trainee: What Leaders Are Looking For” and “COVID-19: A Case Study for Pivoting Your Research”. The AGM included presentations from clinician investigator trainees nationwide. Over 70 abstracts were showcased, most are summarized in this review, and six were selected for oral presentations.
Journal Article
Overview of the Canadian Clinician Investigator Trainees’ research presented at the 2019 CSCI-CITAC Joint Meeting
by
Lefebvre, Cory
,
Ware, Matthaeus A.
,
Balestrini, Christopher S.
in
Apoptosis
,
Autophagy
,
Biology
2020
The 2019 Annual General Meeting and Young Investigators’ Forum of the Canadian Society for Clinical Investigation / Société Canadienne de Recherche Clinique (CSCI/SCRC) and Clinician Investigator Trainee Association of Canada / Association des Cliniciens-Chercheurs en Formation du Canada (CITAC/ACCFC) was held in Banff, Alberta on November 8–10th, 2019. The theme was “Positioning Early Career Investigators for Success: Strategy and Resilience”. Lectures and workshops provided knowledge and tools to facilitate the attendees’ development as clinician investigators. Dr. Jason Berman (President of CSCI/SCRC), Elina Cook (President of CITAC/ACCFC) and Drs. Doreen Rabi and Zelma Kiss (University of Calgary Organizing Co-Chairs) gave opening presentations. The keynote speakers were Dr. William Foulkes (McGill University) (Distinguished Scientist Award winner) and Dr. Andrés Finzi (Université de Montréal) (Joe Doupe Young Investigator Award winner). Dr. Robert Bortolussi (Dalhousie University) received the Distinguished Service Award for his work as the Editor-in-Chief of Clinical and Investigative Medicine and for being instrumental in the development of the Canadian Child Health Clinician Scientist Program. This meeting was the first to host a panel discussion with Drs. Stephen Robbins and Marcello Tonelli from the Canadian Institutes of Health Research. Workshops on communication, career planning and work-life balance were hosted by André Picard and Drs. Todd Anderson, Karen Tang, William Ghali, May Lynn Quan, Alicia Polachek and Shannon Ruzycki. The AGM showcased 90 presentations from clinician investigator trainees from across Canada. Most of the abstracts are summarized in this review. Eight outstanding abstracts were selected for oral presentation at the President’s Forum.
Journal Article
OVERVIEW OF THE CANADIAN CLINICIAN INVESTIGATOR TRAINEES' RESEARCH PRESENTED AT THE 2020 CSCI-CITAC JOINT MEETING
by
Phuong, Melissa S
,
Saint-Georges, Zacharie
,
Jomaa, Danny
in
Breast cancer
,
Coronaviruses
,
COVID-19
2021
The 2020 Annual General Meeting (AGM) and Young Investigators' Forum of the Canadian Society for Clinical Investigation / Société Canadienne de Recherches Clinique (CSCI/SCRC) and Clinician Investigator Trainee Association of Canada/Association des Cliniciens-Chercheurs en Formation du Canada (CITAC/ACCFC) was the first meeting to be hosted virtually. The theme was Navigating Uncertainty, Embracing Change and Empowering the Next Generation of Clinician-Scientists, and the meeting featured lectures and workshops that were designed to provide knowledge and skills for professional development of clinician investigator trainees. The opening remarks were given by Jason Berman (President of CSCI/SCRC), Tina Marvasti (President of CITAC/ ACCFC) and Nicola Jones (University of Toronto Clinician Investigator Program Symposium Chair). Dr. Michael Strong, President of the Canadian Institutes of Health Research, delivered the keynote presentation titled CIHR's COVID-19 Response and Strategic Planning. Dr. John Bell (University of Ottawa) received the CSCI Distinguished Scientist Award, Dr. Stanley Nattel (Université de Montréal) received the CSCI-RCPSC Henry Friesen Award (RCPSC; Royal College of Physicians and Surgeons of Canada) and Dr. Meghan Azad (University of Manitoba) received the CSCI Joe Doupe Young Investigator Award. Each scientist delivered talks on their award-winning research. The interactive workshops were Developing Strategies to Maintain Wellness, Understanding the Hidden Curriculum: Power and Privilege in Science and Medicine, Hiring a Clinician Scientist Trainee: What Leaders Are Looking For and COVID-19: A Case Study for Pivoting Your Research. The AGM included presentations from clinician investigator trainees nationwide. Over 70 abstracts were showcased, most are summarized in this review, and six were selected for oral presentations.
Journal Article