Clinical audit research and evaluation of motor neuron disease (CARE-MND): a national electronic platform for prospective, longitudinal monitoring of MND in Scotland

Danielle Leighton, Judith Newton, Shuna Colville, Andrew Bethell, Gillian Craig, Laura Cunningham, Moira Flett, Dianne Fraser, Janice Hatrick, Helen Lennox, Laura Marshall, Dympna McAleer, Alison McEleney, Kitty Millar, Ann Silver, Laura Stephenson, Susan Stewart, Dorothy Storey, Gill Stott, Carol ThorntonCarolyn Webber, Harry Gordon, Giulia Melchiorre, Laura Sherlock, Emily Beswick, David Buchanan, Sharon Abrahams, Anthony Bateman, Jenny Preston, Callum Duncan, Richard Davenport, George Gorrie, Ian Morrison, Robert Swingler, Siddharthan Chandran, Suvankar Pal

    Research output: Contribution to journalArticle

    Abstract

    Objectives: Launched in 1989, the Scottish Motor Neuron Disease Register (SMNDR) has provided a resource for prospective clinical data collection. However, in 2015 we aimed to evolve a system to allow: i) A patient-centered approach to care based on recognized standards, ii) Harmonized data sharing between Scottish health professionals in "real-time", iii) Regular audit of care to facilitate timely improvements in service delivery, and iv) Patient participation in a diverse range of observational and interventional research studies including clinical trials. Methods: We developed a standardized national electronic data platform-Clinical Audit Research and Evaluation of MND (CARE-MND) which integrates clinical audit and research data fields. Data completion pre- and post-CARE-MND were compared, guided by recently published National Institute for Clinical Excellence (NICE) recommendations. Statistical difference in data capture between time periods was assessed using Z-test of proportions. Results: Data field completion for the historical 2011-2014 period ranged from 4 to 95%; median 50%. CARE-MND capture ranged from 32 to 98%; median 87%. 15/17 fields were significantly more complete post-CARE-MND ( p  < 0.001). All MND nurse/allied health specialists in Scotland use the CARE-MND platform. Management of MND in Scotland is now coordinated through a standardized template. Conclusions: Through CARE-MND, national audits of MND care and interventions have been possible, leading to protocols for harmonized service provision. Stratification of the MND population is facilitating participation in observational and interventional studies. CARE-MND can act as a template for other neurological disorders.

    Original languageEnglish
    Pages (from-to)242-250
    Number of pages9
    JournalAmyotrophic Lateral Sclerosis and Frontotemporal Degeneration
    Volume20
    Issue number3-4
    Early online date20 Mar 2019
    DOIs
    Publication statusPublished - 20 Mar 2019

    Fingerprint

    Clinical Audit
    Motor Neuron Disease
    Scotland
    Patient Participation
    Information Dissemination
    Health
    Nervous System Diseases
    Research
    Observational Studies
    Nurses
    Clinical Trials

    Keywords

    • Care
    • epidemiology
    • motor neuron disease
    • patient-centered
    • technology

    Cite this

    Leighton, Danielle ; Newton, Judith ; Colville, Shuna ; Bethell, Andrew ; Craig, Gillian ; Cunningham, Laura ; Flett, Moira ; Fraser, Dianne ; Hatrick, Janice ; Lennox, Helen ; Marshall, Laura ; McAleer, Dympna ; McEleney, Alison ; Millar, Kitty ; Silver, Ann ; Stephenson, Laura ; Stewart, Susan ; Storey, Dorothy ; Stott, Gill ; Thornton, Carol ; Webber, Carolyn ; Gordon, Harry ; Melchiorre, Giulia ; Sherlock, Laura ; Beswick, Emily ; Buchanan, David ; Abrahams, Sharon ; Bateman, Anthony ; Preston, Jenny ; Duncan, Callum ; Davenport, Richard ; Gorrie, George ; Morrison, Ian ; Swingler, Robert ; Chandran, Siddharthan ; Pal, Suvankar. / Clinical audit research and evaluation of motor neuron disease (CARE-MND) : a national electronic platform for prospective, longitudinal monitoring of MND in Scotland. In: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration. 2019 ; Vol. 20, No. 3-4. pp. 242-250.
    @article{a2c932f68fb447deaf3356713df4cbad,
    title = "Clinical audit research and evaluation of motor neuron disease (CARE-MND): a national electronic platform for prospective, longitudinal monitoring of MND in Scotland",
    abstract = "Objectives: Launched in 1989, the Scottish Motor Neuron Disease Register (SMNDR) has provided a resource for prospective clinical data collection. However, in 2015 we aimed to evolve a system to allow: i) A patient-centered approach to care based on recognized standards, ii) Harmonized data sharing between Scottish health professionals in {"}real-time{"}, iii) Regular audit of care to facilitate timely improvements in service delivery, and iv) Patient participation in a diverse range of observational and interventional research studies including clinical trials. Methods: We developed a standardized national electronic data platform-Clinical Audit Research and Evaluation of MND (CARE-MND) which integrates clinical audit and research data fields. Data completion pre- and post-CARE-MND were compared, guided by recently published National Institute for Clinical Excellence (NICE) recommendations. Statistical difference in data capture between time periods was assessed using Z-test of proportions. Results: Data field completion for the historical 2011-2014 period ranged from 4 to 95{\%}; median 50{\%}. CARE-MND capture ranged from 32 to 98{\%}; median 87{\%}. 15/17 fields were significantly more complete post-CARE-MND ( p  < 0.001). All MND nurse/allied health specialists in Scotland use the CARE-MND platform. Management of MND in Scotland is now coordinated through a standardized template. Conclusions: Through CARE-MND, national audits of MND care and interventions have been possible, leading to protocols for harmonized service provision. Stratification of the MND population is facilitating participation in observational and interventional studies. CARE-MND can act as a template for other neurological disorders.",
    keywords = "Care, epidemiology, motor neuron disease, patient-centered, technology",
    author = "Danielle Leighton and Judith Newton and Shuna Colville and Andrew Bethell and Gillian Craig and Laura Cunningham and Moira Flett and Dianne Fraser and Janice Hatrick and Helen Lennox and Laura Marshall and Dympna McAleer and Alison McEleney and Kitty Millar and Ann Silver and Laura Stephenson and Susan Stewart and Dorothy Storey and Gill Stott and Carol Thornton and Carolyn Webber and Harry Gordon and Giulia Melchiorre and Laura Sherlock and Emily Beswick and David Buchanan and Sharon Abrahams and Anthony Bateman and Jenny Preston and Callum Duncan and Richard Davenport and George Gorrie and Ian Morrison and Robert Swingler and Siddharthan Chandran and Suvankar Pal",
    note = "This work was supported by grant CAF/MND/15/01, jointly funded by the Chief Scientist Office for Scotland, MND Scotland and the MND Association. MND Scotland also contributed additionally to the overall funding of CARE-MND development.",
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    Leighton, D, Newton, J, Colville, S, Bethell, A, Craig, G, Cunningham, L, Flett, M, Fraser, D, Hatrick, J, Lennox, H, Marshall, L, McAleer, D, McEleney, A, Millar, K, Silver, A, Stephenson, L, Stewart, S, Storey, D, Stott, G, Thornton, C, Webber, C, Gordon, H, Melchiorre, G, Sherlock, L, Beswick, E, Buchanan, D, Abrahams, S, Bateman, A, Preston, J, Duncan, C, Davenport, R, Gorrie, G, Morrison, I, Swingler, R, Chandran, S & Pal, S 2019, 'Clinical audit research and evaluation of motor neuron disease (CARE-MND): a national electronic platform for prospective, longitudinal monitoring of MND in Scotland', Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, vol. 20, no. 3-4, pp. 242-250. https://doi.org/10.1080/21678421.2019.1582673

    Clinical audit research and evaluation of motor neuron disease (CARE-MND) : a national electronic platform for prospective, longitudinal monitoring of MND in Scotland. / Leighton, Danielle; Newton, Judith; Colville, Shuna; Bethell, Andrew; Craig, Gillian; Cunningham, Laura; Flett, Moira; Fraser, Dianne; Hatrick, Janice; Lennox, Helen; Marshall, Laura; McAleer, Dympna; McEleney, Alison; Millar, Kitty; Silver, Ann; Stephenson, Laura; Stewart, Susan; Storey, Dorothy; Stott, Gill; Thornton, Carol; Webber, Carolyn; Gordon, Harry; Melchiorre, Giulia; Sherlock, Laura; Beswick, Emily; Buchanan, David; Abrahams, Sharon; Bateman, Anthony; Preston, Jenny; Duncan, Callum; Davenport, Richard; Gorrie, George; Morrison, Ian; Swingler, Robert; Chandran, Siddharthan; Pal, Suvankar.

    In: Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration, Vol. 20, No. 3-4, 20.03.2019, p. 242-250.

    Research output: Contribution to journalArticle

    TY - JOUR

    T1 - Clinical audit research and evaluation of motor neuron disease (CARE-MND)

    T2 - a national electronic platform for prospective, longitudinal monitoring of MND in Scotland

    AU - Leighton, Danielle

    AU - Newton, Judith

    AU - Colville, Shuna

    AU - Bethell, Andrew

    AU - Craig, Gillian

    AU - Cunningham, Laura

    AU - Flett, Moira

    AU - Fraser, Dianne

    AU - Hatrick, Janice

    AU - Lennox, Helen

    AU - Marshall, Laura

    AU - McAleer, Dympna

    AU - McEleney, Alison

    AU - Millar, Kitty

    AU - Silver, Ann

    AU - Stephenson, Laura

    AU - Stewart, Susan

    AU - Storey, Dorothy

    AU - Stott, Gill

    AU - Thornton, Carol

    AU - Webber, Carolyn

    AU - Gordon, Harry

    AU - Melchiorre, Giulia

    AU - Sherlock, Laura

    AU - Beswick, Emily

    AU - Buchanan, David

    AU - Abrahams, Sharon

    AU - Bateman, Anthony

    AU - Preston, Jenny

    AU - Duncan, Callum

    AU - Davenport, Richard

    AU - Gorrie, George

    AU - Morrison, Ian

    AU - Swingler, Robert

    AU - Chandran, Siddharthan

    AU - Pal, Suvankar

    N1 - This work was supported by grant CAF/MND/15/01, jointly funded by the Chief Scientist Office for Scotland, MND Scotland and the MND Association. MND Scotland also contributed additionally to the overall funding of CARE-MND development.

    PY - 2019/3/20

    Y1 - 2019/3/20

    N2 - Objectives: Launched in 1989, the Scottish Motor Neuron Disease Register (SMNDR) has provided a resource for prospective clinical data collection. However, in 2015 we aimed to evolve a system to allow: i) A patient-centered approach to care based on recognized standards, ii) Harmonized data sharing between Scottish health professionals in "real-time", iii) Regular audit of care to facilitate timely improvements in service delivery, and iv) Patient participation in a diverse range of observational and interventional research studies including clinical trials. Methods: We developed a standardized national electronic data platform-Clinical Audit Research and Evaluation of MND (CARE-MND) which integrates clinical audit and research data fields. Data completion pre- and post-CARE-MND were compared, guided by recently published National Institute for Clinical Excellence (NICE) recommendations. Statistical difference in data capture between time periods was assessed using Z-test of proportions. Results: Data field completion for the historical 2011-2014 period ranged from 4 to 95%; median 50%. CARE-MND capture ranged from 32 to 98%; median 87%. 15/17 fields were significantly more complete post-CARE-MND ( p  < 0.001). All MND nurse/allied health specialists in Scotland use the CARE-MND platform. Management of MND in Scotland is now coordinated through a standardized template. Conclusions: Through CARE-MND, national audits of MND care and interventions have been possible, leading to protocols for harmonized service provision. Stratification of the MND population is facilitating participation in observational and interventional studies. CARE-MND can act as a template for other neurological disorders.

    AB - Objectives: Launched in 1989, the Scottish Motor Neuron Disease Register (SMNDR) has provided a resource for prospective clinical data collection. However, in 2015 we aimed to evolve a system to allow: i) A patient-centered approach to care based on recognized standards, ii) Harmonized data sharing between Scottish health professionals in "real-time", iii) Regular audit of care to facilitate timely improvements in service delivery, and iv) Patient participation in a diverse range of observational and interventional research studies including clinical trials. Methods: We developed a standardized national electronic data platform-Clinical Audit Research and Evaluation of MND (CARE-MND) which integrates clinical audit and research data fields. Data completion pre- and post-CARE-MND were compared, guided by recently published National Institute for Clinical Excellence (NICE) recommendations. Statistical difference in data capture between time periods was assessed using Z-test of proportions. Results: Data field completion for the historical 2011-2014 period ranged from 4 to 95%; median 50%. CARE-MND capture ranged from 32 to 98%; median 87%. 15/17 fields were significantly more complete post-CARE-MND ( p  < 0.001). All MND nurse/allied health specialists in Scotland use the CARE-MND platform. Management of MND in Scotland is now coordinated through a standardized template. Conclusions: Through CARE-MND, national audits of MND care and interventions have been possible, leading to protocols for harmonized service provision. Stratification of the MND population is facilitating participation in observational and interventional studies. CARE-MND can act as a template for other neurological disorders.

    KW - Care

    KW - epidemiology

    KW - motor neuron disease

    KW - patient-centered

    KW - technology

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    DO - 10.1080/21678421.2019.1582673

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    JO - Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

    JF - Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration

    SN - 2167-8421

    IS - 3-4

    ER -