Collaborative Research - Quality Outcomes
Collaborative Research - Quality Outcomes

Terminology for Persons with IDD

With growing interest in and use of administrative data to study populations of interest, there is a need to ensure that those populations are easily identified in such data. Our new study reveals that modern terminology is not consistently used in health records to identify presence of an IDD. Just under 1% of the home care population had a diagnostic entry related to IDD. Ambiguous terms were most commonly used (61%), and this group tended to be older and less impaired than the group with more acceptable terms used to describe their IDD. See the full study here: https://bit.ly/2DiLIEV

Social Enterprise Workshop

On August 24th Dr. Rosemary Lysaght gave a presentation to staff from multiple Ontario ministries as part of a workshop on social enterprise sponsored by the Ministry of Economic Development & Growth. Goals of the workshop were to Illustrate the benefits of social enterprise versus more traditional service delivery organizations, highlight new research on social enterprise and social finance, and explore opportunities for Ontario Public Service staff to support social enterprises. Rosemary’s presentation focused on best practices and emerging needs identified in her past and current research, much of which was collected during a Ministry of Community and Social Services sponsored study on social enterprise in the IDD sector. Participants discussed challenges to social enterprise development and growth, and government actions that could help  move this form of employment generation forward.

 

Ethical Factors With New Technologies

Dr. Virginie Cobigo and her team are working on an innovative transdisciplinary research and development project (WP8.3 PRIV-SENSE). The aim is to study ethical factors that arise during the development, commercialization, diffusion and adoption of a technology, which assists aging persons with intellectual and developmental disabilities (IDD) and their caregivers in the safe use of medications. In addition to interviews with relevant stakeholder groups (i.e., healthcare professionals and policy makers) and monitoring data via meeting notes and the researcher’s diaries, this inclusive project engages 6 aging persons with IDD who attended 5 focus groups. During the focus groups, the participants helped the technology developers identify the required features and functionalities of the proposed technology application, and tested the prototype. Currently, data are being analyzed and important insights on the ethical issues related to technology adoption and development for/by aging persons with IDD are expected. A first article was accepted and is to be published in the fall of 2017 in the journal of “Ethics and Behaviour”. It explores privacy protection behaviours and attitudes of aging persons with IDD when using information technologies. This 5-year project is funded by AGE-WELL NCE- a national research network in technology and aging, with a span of 25 universities and research centres across Canada, and more than 80 industry, government, and not-for-profit partners.

Clarabelle Lee – New Trainee

Clarabelle Lee, an undergraduate student in Life Sciences at Queen’s University, has joined the Aging Project team. Her thesis project entitled “Assessing frailty in adults with IDD to improve care planning” will be conducted at Ongwanada.

New HSO Members

We are pleased to announce that Dr. Hélène Ouellette-Kuntz and Dr. Lynn Martin have officially joined Health Standards Organization (HSO) as members of the Developmental Disabilities Technical Committee.

They will help drive the standards development process and ensure that all points of view relating to a standard revision are represented. This HSO Technical Committees includes an individual with a disability, families, service providers, and researchers. For more information: www.hso.world

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