Optimising participation of persons with cognitive impairment in a national dementia registry: challenges and solutions

Xiaoping Lin; Kasey Wallis; Susannah Ahern; Henry Brodaty; Christopher Rowe; Barbara Kain; Sally Lambourne; John McNeil; Stephanie A. Ward

doi:10.1111/imj.15357

Optimising participation of persons with cognitive impairment in a national dementia registry: challenges and solutions

Xiaoping Lin, Kasey Wallis, Susannah Ahern, Henry Brodaty, Christopher Rowe, Barbara Kain, Sally Lambourne, John McNeil, Stephanie A. Ward

Research output: Contribution to journal › Article › Research › peer-review

3 Citations (Scopus)

Abstract

Clinical quality registries are increasingly utilised to monitor and improve healthcare quality. Opt-out consent is recommended to maximise participation and ensure validity of data, however, presents specific considerations when including persons with impaired decision-making abilities. This paper describes the innovative Australian Dementia Network Registry recruitment framework designed to optimise inclusion of people with dementia and mild cognitive impairment.

Original language	English
Pages (from-to)	988-992
Number of pages	5
Journal	Internal Medicine Journal
Volume	51
Issue number	6
DOIs	https://doi.org/10.1111/imj.15357
Publication status	Published - Jun 2021

Keywords

dementia
informed consent
neurodegenerative disorders
quality of health care
registries
research ethics

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10.1111/imj.15357

Cite this

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title = "Optimising participation of persons with cognitive impairment in a national dementia registry: challenges and solutions",

abstract = "Clinical quality registries are increasingly utilised to monitor and improve healthcare quality. Opt-out consent is recommended to maximise participation and ensure validity of data, however, presents specific considerations when including persons with impaired decision-making abilities. This paper describes the innovative Australian Dementia Network Registry recruitment framework designed to optimise inclusion of people with dementia and mild cognitive impairment.",

keywords = "dementia, informed consent, neurodegenerative disorders, quality of health care, registries, research ethics",

author = "Xiaoping Lin and Kasey Wallis and Susannah Ahern and Henry Brodaty and Christopher Rowe and Barbara Kain and Sally Lambourne and John McNeil and Ward, \{Stephanie A.\}",

note = "Funding Information: Funding: Funding for the ADNeT registry is from two projects: (i) The Australian Dementia Network (ADNeT): Bringing together Australia's dementia stakeholders, which is funded by the National Health and Medical Research Council (NHMRC)'s National Institute for Dementia Research (NNIDR) (Principal investigator: C. Rowe, NHMRC APP: 1152623); and (ii) A pilot dementia clinical Quality registry to improve dementia clinical care, which is funded by NNDIR (Principal investigator: J. McNeil, NHMRC APP 1140485). The funding body has no role in the design of the study, collection, analysis, and interpretation of the data, and in writing the manuscript. Publisher Copyright: {\textcopyright} 2021 Royal Australasian College of Physicians Copyright: Copyright 2021 Elsevier B.V., All rights reserved.",

year = "2021",

month = jun,

doi = "10.1111/imj.15357",

language = "English",

volume = "51",

pages = "988--992",

journal = "Internal Medicine Journal",

issn = "1444-0903",

publisher = "Wiley-Blackwell",

number = "6",

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T1 - Optimising participation of persons with cognitive impairment in a national dementia registry

T2 - challenges and solutions

AU - Lin, Xiaoping

AU - Wallis, Kasey

AU - Ahern, Susannah

AU - Brodaty, Henry

AU - Rowe, Christopher

AU - Kain, Barbara

AU - Lambourne, Sally

AU - McNeil, John

AU - Ward, Stephanie A.

N1 - Funding Information: Funding: Funding for the ADNeT registry is from two projects: (i) The Australian Dementia Network (ADNeT): Bringing together Australia's dementia stakeholders, which is funded by the National Health and Medical Research Council (NHMRC)'s National Institute for Dementia Research (NNIDR) (Principal investigator: C. Rowe, NHMRC APP: 1152623); and (ii) A pilot dementia clinical Quality registry to improve dementia clinical care, which is funded by NNDIR (Principal investigator: J. McNeil, NHMRC APP 1140485). The funding body has no role in the design of the study, collection, analysis, and interpretation of the data, and in writing the manuscript. Publisher Copyright: © 2021 Royal Australasian College of Physicians Copyright: Copyright 2021 Elsevier B.V., All rights reserved.

PY - 2021/6

Y1 - 2021/6

N2 - Clinical quality registries are increasingly utilised to monitor and improve healthcare quality. Opt-out consent is recommended to maximise participation and ensure validity of data, however, presents specific considerations when including persons with impaired decision-making abilities. This paper describes the innovative Australian Dementia Network Registry recruitment framework designed to optimise inclusion of people with dementia and mild cognitive impairment.

AB - Clinical quality registries are increasingly utilised to monitor and improve healthcare quality. Opt-out consent is recommended to maximise participation and ensure validity of data, however, presents specific considerations when including persons with impaired decision-making abilities. This paper describes the innovative Australian Dementia Network Registry recruitment framework designed to optimise inclusion of people with dementia and mild cognitive impairment.

KW - dementia

KW - informed consent

KW - neurodegenerative disorders

KW - quality of health care

KW - registries

KW - research ethics

UR - https://www.scopus.com/pages/publications/85108263162

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DO - 10.1111/imj.15357

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Optimising participation of persons with cognitive impairment in a national dementia registry: challenges and solutions

Abstract

Keywords

Access to Document

Other files and links

The Standardised Electronic Dementia Health Assessment for Improving and Monitoring the Quality of Clinical Care

A pilot dementia clinical quality registry to improve dementia clinical care

Cite this

Optimising participation of persons with cognitive impairment in a national dementia registry: challenges and solutions

Abstract

Keywords

Access to Document

Other files and links

Projects

The Standardised Electronic Dementia Health Assessment for Improving and Monitoring the Quality of Clinical Care

A pilot dementia clinical quality registry to improve dementia clinical care

Cite this