MedInfo - program

SESSION 104: <br/>Global health informatics

MedInfo 4

Saturday, July 8, 2023

9:00 AM - 10:30 AM

C4.5

Overview

C4.5
Workshop

Details

This session contains two 40 minute workshops.

Workshop: Making accessible futures: Bringing function and disability into the informatics conversation

Over one sixth of the world’s population is disabled, and the number of people experiencing disability is rapidly increasing. Global aging and the growing prevalence of multi-morbidity mean that disability is becoming a near-universal experience, whether through personal experience or the experience of family and friends. Providing effective care and social support for people with disabilities requires understanding their holistic experience which goes beyond pathologies and impairments, including capturing people’s lived function and priorities for their well-being. For patient-centered care, optimizing an individual’s functional experience outside the clinic (e.g., mobility in the workplace, getting together with friends in the community) is just as important as diagnosis and treatment inside the clinic. However, information on functional status and disability experience has proven difficult to capture and utilize within existing information systems and informatics paradigms, leaving a space ripe for ontological exploration and technological innovation.

The collection of information on functional status and disability across health and social care is limited. Moreover, definitions of disability—and therefore of what data about disability experience are relevant—may vary between patients, practitioners, policymakers, and other parties. These differences of understanding and prioritization contribute to the current lack of reliable information on disability experience, and can lead to harmful differences and counterproductive design in technology development.

This workshop aims to exchange knowledge around needs, opportunities, and strategies for growing informatics efforts focused on function and disability. The activities of the workshop will help build community connection and engagement in this vital area and map strategies for enabling principles of disability equity and inclusion to be foundational in global informatics efforts, versus an afterthought.

Speaker

Dr Michael Bainbridge FAIDH CHIA

CIO & Adjunct Prof Clinical Informatics

University of Victoria

Session chair

Biography

Mike is a leader in Health and Clinical Informatics having contributed for over 35 years. He's skilled in Consulting, Performance Improvement, Medical Devices, Enterprise Architecture, UI / UX, Safety and Policy. He's also a strong business development professional with academic credentials

Dr Denis Newman-Griffis

Assistant Professor in Data Science

University of Sheffield

Workshop: Making accessible futures: Bringing function and disability into the informatics conversation

9:00 AM - 9:40 AM

Presentation

Biography

Dr Denis Newman-Griffis (they/them), PhD, is a Lecturer in Data Science at the University of Sheffield, a Visiting Fellow of the National Institutes of Health Clinical Center, and a member of the UK Young Academy. Dr Newman-Griffis’s work investigates practices and methods at the intersection of disability and data science. They co-founded the workshop series on Artificial Intelligence for Function, Disability, and Health (AI4Function).

Gillian Mason

Consumer and Community Involvement Lead

Hunter Medical Research Institute

Workshop: Making accessible futures: Bringing function and disability into the informatics conversation

9:00 AM - 9:40 AM

Presentation

Biography

Gillian Mason is a proudly disabled physiotherapist researcher, patient representative, disability inclusion advocate and science communicator. She brings a dual patient-clinician perspective to the design and implementation of research. She explores how technologies can contribute to more efficient and intuitive healthcare, rehabilitation and living, as it intersects with healthcare when there's chronic illness to manage. At Hunter Medical Research Institute, as Consumer and Community Involvement Lead, she provides strategic advice, training and mentorship around patient and public involvement in healthcare research, and manages the Research Register. She is a member of the Australian Department of Health's Health Technology Assessment Consumer Consultative Committee, and a Consumer Representative member of the Medical Services Advisory Committee. Gillian is honoured to serve as a Board member of the Australasian Institute of Digital Health and, in that capacity, thrilled to be able to welcome you to MedInfo in Sydney!