Jennifer Thompson is the Operations Manager of the Cognitive Decline Partnership Centre (CDPC) at the University of Sydney, Australia where she oversees, for the Director, Professor Susan Kurrle, all operational, research, and reporting for the Centre and the thirty-two research projects and their teams supported through the Centre.
Jennifer holds a degree in Science (Human Biology); is completing a Master’s degree in Health Policy, and is passionate about the need for evidence-based research that can lead to real improvements in health and healthcare. Jennifer has experience working in and managing pharmaceutical clinical trials, collaborative group research, and academic research. She understands clinical research site and operations management from both a sponsor and site perspective.
Jennifer is also passionate about ensuring the voice of the consumer is heard at all stages of research. She sat on the Steering Committee for a young people’s research advisory group at The Children’s Hospital at Sydney, Kids Research Institute in Sydney Australia and accompanied that group’s inaugural youth representative to the 2015 International Children’s Advisory Network (iCAN) Launch and Research Summit in Washington, D.C.
In her position at the CDPC Jennifer continues to advocate for consumers and works very closely with the Dementia Australia Consumer Network Lead and others to ensure the consumer voice (people with dementia or their carers) informs all CDPC research Activities and outputs.
The Cognitive Decline Partnership Centre: a national research partnership model enabling improved care for people with dementia in Australia
Megan Corlis is the Director of Research & Development at Helping Hand Aged Care. She is a registered nurse who has worked extensively across the acute and aged care sectors in senior roles both as a clinician and in management. Megan’s current role focusses on creating innovative collaborations between industry and researchers. She worked as a ‘catalyst’ with the Thinker in Residence, Dr Kalache and is working to integrate his concepts of ‘age friendliness’ across a range of sectors and the broader community. She has been instrumental in setting up an MOU with UniSA which has resulted in a number of research activities.
She has held a number of roles across the aged-care industry including Board Member on the North East Division of General Practice and for TAFE. Currently she is on the Advisory Committee for the Centre for Culture and Languages at UniSA, the National Advisory Committee for the Advanced Care Planning Prevalence Study and a member of the Steering Group for SAHMRI Register for Older Australians (ROSA).
Megan’s strengths are in transference of research into the practice area. She has a strong consumer focus and passionately believes in co-design as an important principle for working with older people.
Gaynor Parfitt is an exercise and sport psychologist, who moved to the University of South Australia, from Exeter University (UK), in April 2011. After an early career that focussed on anxiety and performance in sport (working with amongst others England Women’s Hockey and the British Gymnastics teams), Gaynor’s research interests changed to focus upon the chronic and acute effects of exercise on psychological and physical well-being, motivational factors that may influence adoption and maintenance of exercise and physical activity, and methods of exercise intensity regulation to maximise psychological and physical benefits. Gaynor’s research has evaluated the effect of exercise on individuals across the lifespan, from childhood through to older adults and has included individuals with and without chronic conditions.
The Cognitive Decline Partnership Centre (CDPC) at the University of Sydney in Australia is a unique federal and industry supported research model with a vision to improve the lives of people with dementia. Presenters in this session represent the Centre, residential aged-care partners, consumers, and researchers. They will share their individual and group experiences and learnings from their participation in this vibrant national research centre that has supported, between 2014 and 2017, thirty-two (32) research activities across the eight Centre themes.
With cognitive and associated functional decline pathologies affecting not only the individual, but also their family and community, they cause significant personal, social and economic consequences for individuals, health systems, and global economies (WHO, 2015). The Cognitive Decline Partnership Centre model was developed at federal level and offers a new narrative for funding and implementing research outcomes across a wide-range of themes focused on improved care for people with dementia and associated functional decline. Academic and system-based researchers, government, peak consumer body, and residential aged-care providers work together under this model. The Centre’s collaborative processes first aided in identifying unmet needs and research priorities for improving care for people with cognitive and related functional decline in Australia, and then project grants were awarded to teams that must include implementation into policy or practice as part of their scope of work.
The CDPC works broadly across eight themes: service model options; pathways and navigation; planning for later life; attitude and culture; clinical guidelines development; functional decline; medication management; and workforce development and education. CDPC research activities are funded under a contributory partnership model, with another unique aspect of the CDPC being that research teams are expected to include consumers ie. people with dementia and/or their carers, across all stages of the research cycle; from Protocol development to final reporting. This enables the embedding of the consumer and end-user perspective into all outcomes and developed resources. CDPC researchers must ensure their research outcomes, outputs, and interventions; develop in collaboration with consumer, industry, policy leaders, and health professionals; to enable real implementation of research-informed systems and attitude change and to improve care for people with dementia in Australia.
DEMENTIA RESEARCH IN AUSTRALIA; HOW ONE COLLABORATIVE CENTRE IS MODELLING SUCCESSFUL GOVERNMENT, INDUSTRY, RESEARCHER, AND CONSUMER COLLABORATION
With dementia being a National Health Priority in Australia (Australian Institute of Health and Welfare, 2017), there is a growing need for evidence-based action in the areas of prevention, cure, and care. The Cognitive Decline Partnership Centre (CDPC) mission is to develop and communicate research to improve the care of people with dementia and related functional decline. Jennifer Thompson, CDPC Operations Manager, will give a historical and operational overview of this unique Australian partnership model, outlining why and how the Centre came into existence, and how its structure is enabling high quality research designed to maximise collaboration inclusive of industry and consumers. and potential for implementation of real change in practice.
During this presentation Jennifer Thompson will provide a good overview and individual examples for how the CDPC output development strategies facilitate creation of high quality academic and non-academic research outputs and resources. You will hear stories of impact that provide evidence of the success of the model in ensuring research leads to research informed change that is improving care for people dementia and associated functional decline in Australia.
ACTIVE CONSUMER INVOLVEMENT IN DEMENTIA RESEARCH IS ACHIEVABLE
CDPC consumers, researchers, and industry partners have developed implementable research evidence based resources across a wide-range of themes focused on improving care for people with dementia. Projects completed to date include development of Clinical Practice Guidelines and Principles of Care for People with Dementia, and accompanying Consumer Companion Guide; a model of care for Confused Hospitalised Older People (CHOPS) in acute care centres; and Improving Quality of Residential Dementia Care and Promoting change by Supporting and Caring for Staff.
Involvement of people with dementia and associated functional decline and/or their carers (consumers) at all stages of research development, conduct, reporting and implementation of research outcomes has been a key factor for success for the CDPC. Jennifer Henderson (consumer) will relate how the CDPC is helping improve care for people with dementia and provide evidence on how consumers can be major contributors in research. You will hear about representation at CDPC Centre Governance, Executive Committee level and Scientific Sub-Committee level. You will learn how consumer values and active participation has informed individual research projects right from Protocol development through to development of strategies for implementation of research outcomes into policy and practice.
TRANSLATING RESEARCH INTO PRACTICE – COLLABORATING FROM THE RESIDENTIAL-AGED CARE PERSPECTIVE
Translating research into practice is usually not as effective as it needs to be for sustainable improvements in practice and clinical outcomes, with evidence that a significant lag exists for research being put into practice. Is this lag due to practice areas not recognising evidence, or is the research flawed in its construct – being isolated from the reality of culture and real world constraints?
The CDPC attempts to address this issue by bringing together players (research, industry and consumer) within a structure that supports researchers to make better decisions about how they undertake research, and facilitates implementation of research outcomes into practices improving care for people with dementia.
During this presentation, industry-funding partners will describe their involvement and experience of collaborating directly in research processes. Specifically, the barriers, enablers, and challenges, which contribute to the success of research translation and the dynamics of partnerships from an industry perspective.
The presentation will challenge current research academic processes, to changing power constructs that ensure truly equal partnerships exist in the research process. This paradigm shift, whereby control is handed to consumers and practice arenas, requires effective change management and implementation processes.
RESEARCHER PERSPECTIVE ON COLLABORATIVE CENTRE INVOLVEMENT
A/Prof Gaynor Parfitt is an Australian researcher working to improve the lives of people with dementia. The Cognitive Decline Partnership Centre (CDPC) have supported her project, evaluating the effectiveness of exercise prescription for people with dementia residing in residential aged care facilities. Professor Parfitt will describe her own experience, as recipient of a CDPC grant, of how she and her research team have entered into a research process unlike any they have been involved in previously. With CDPC research Activity teams required to include aged care provider staff, people with dementia, and/or carers, at all stages of the research process, Professor Parfitt now has insights that she will share into the challenges and benefits of the model for those in residential aged care.
During this session Professor Parfitt will also give an overview of the attitudes of other CDPC researchers from survey data collected during the CDPC Evaluation Project. These will include researchers’ attitudes about the efficacy of a collaborative partnership model and the value of committing their time to the CDPC. It will also highlight the importance of involving end-users throughout the research process and how this has affected and impacted their research.