Research priorities in advanced heart failure: James Lind alliance priority setting partnership

Clare J Taylor; Alyson L Huntley; John Burden; Amy Gadoud; Toto Gronlund; Nicholas Robert Jones; Eleanor Wicks; Sara McKelvie; Kit Byatt; Richard Lehman; Anna King; Bev Mumford; Gene Feder; Jonathan Mant; Richard Hobbs; Rachel Johnson

doi:10.1136/openhrt-2020-001258

Research priorities in advanced heart failure: James Lind alliance priority setting partnership

Clare J Taylor, Alyson L Huntley, John Burden, Amy Gadoud, Toto Gronlund, Nicholas Robert Jones, Eleanor Wicks, Sara McKelvie, Kit Byatt, Richard Lehman, Anna King, Bev Mumford, Gene Feder, Jonathan Mant, Richard Hobbs, Rachel Johnson^*

^*Corresponding author for this work

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Abstract

OBJECTIVE: To determine research priorities in advanced heart failure (HF) for patients, carers and healthcare professionals.

METHODS: Priority setting partnership using the systematic James Lind Alliance method for ranking and setting research priorities. An initial open survey of patients, carers and healthcare professionals identified respondents' questions, which were categorised to produce a list of summary research questions; questions already answered in existing literature were removed. In a second survey of patients, carers and healthcare professionals, respondents ranked the summary research questions in order of priority. The top 25 unanswered research priorities were then considered at a face-to-face workshop using nominal group technique to agree on a 'top 10'.

RESULTS: 192 respondents submitted 489 responses each containing one or more research uncertainty. Out-of-scope questions (35) were removed, and collating the responses produced 80 summary questions. Questions already answered in the literature (15) were removed. In the second survey, 65 questions were ranked by 128 respondents. The top 10 priorities were developed at a consensus meeting of stakeholders and included a focus on quality of life, psychological support, the impact on carers, role of the charity sector and managing prognostic uncertainty. Ranked priorities by physicians and patients were remarkably divergent.

CONCLUSIONS: Engaging stakeholders in setting research priorities led to a novel set of research questions that might not have otherwise been considered. These priorities can be used by researchers and funders to direct future research towards the areas which matter most to people living with advanced HF.

Original language	English
Article number	e001258
Number of pages	9
Journal	Open Heart
Volume	7
Issue number	1
DOIs	https://doi.org/10.1136/openhrt-2020-001258
Publication status	Published - 30 Jun 2020

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Taylor, C. J., Huntley, A. L., Burden, J., Gadoud, A., Gronlund, T., Jones, N. R., Wicks, E., McKelvie, S., Byatt, K., Lehman, R., King, A., Mumford, B., Feder, G., Mant, J., Hobbs, R., & Johnson, R. (2020). Research priorities in advanced heart failure: James Lind alliance priority setting partnership. Open Heart, 7(1), Article e001258. https://doi.org/10.1136/openhrt-2020-001258

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title = "Research priorities in advanced heart failure: James Lind alliance priority setting partnership",

abstract = "OBJECTIVE: To determine research priorities in advanced heart failure (HF) for patients, carers and healthcare professionals.METHODS: Priority setting partnership using the systematic James Lind Alliance method for ranking and setting research priorities. An initial open survey of patients, carers and healthcare professionals identified respondents' questions, which were categorised to produce a list of summary research questions; questions already answered in existing literature were removed. In a second survey of patients, carers and healthcare professionals, respondents ranked the summary research questions in order of priority. The top 25 unanswered research priorities were then considered at a face-to-face workshop using nominal group technique to agree on a 'top 10'.RESULTS: 192 respondents submitted 489 responses each containing one or more research uncertainty. Out-of-scope questions (35) were removed, and collating the responses produced 80 summary questions. Questions already answered in the literature (15) were removed. In the second survey, 65 questions were ranked by 128 respondents. The top 10 priorities were developed at a consensus meeting of stakeholders and included a focus on quality of life, psychological support, the impact on carers, role of the charity sector and managing prognostic uncertainty. Ranked priorities by physicians and patients were remarkably divergent.CONCLUSIONS: Engaging stakeholders in setting research priorities led to a novel set of research questions that might not have otherwise been considered. These priorities can be used by researchers and funders to direct future research towards the areas which matter most to people living with advanced HF.",

author = "Taylor, {Clare J} and Huntley, {Alyson L} and John Burden and Amy Gadoud and Toto Gronlund and Jones, {Nicholas Robert} and Eleanor Wicks and Sara McKelvie and Kit Byatt and Richard Lehman and Anna King and Bev Mumford and Gene Feder and Jonathan Mant and Richard Hobbs and Rachel Johnson",

note = "{\textcopyright} Author(s) (or their employer(s)) 2020. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.",

year = "2020",

month = jun,

day = "30",

doi = "10.1136/openhrt-2020-001258",

language = "English",

volume = "7",

journal = "Open Heart",

issn = "2053-3624",

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AU - Huntley, Alyson L

AU - Burden, John

AU - Gadoud, Amy

AU - Gronlund, Toto

AU - Jones, Nicholas Robert

AU - Wicks, Eleanor

AU - McKelvie, Sara

AU - Byatt, Kit

AU - Lehman, Richard

AU - King, Anna

AU - Mumford, Bev

AU - Feder, Gene

AU - Mant, Jonathan

AU - Hobbs, Richard

AU - Johnson, Rachel

PY - 2020/6/30

Y1 - 2020/6/30

N2 - OBJECTIVE: To determine research priorities in advanced heart failure (HF) for patients, carers and healthcare professionals.METHODS: Priority setting partnership using the systematic James Lind Alliance method for ranking and setting research priorities. An initial open survey of patients, carers and healthcare professionals identified respondents' questions, which were categorised to produce a list of summary research questions; questions already answered in existing literature were removed. In a second survey of patients, carers and healthcare professionals, respondents ranked the summary research questions in order of priority. The top 25 unanswered research priorities were then considered at a face-to-face workshop using nominal group technique to agree on a 'top 10'.RESULTS: 192 respondents submitted 489 responses each containing one or more research uncertainty. Out-of-scope questions (35) were removed, and collating the responses produced 80 summary questions. Questions already answered in the literature (15) were removed. In the second survey, 65 questions were ranked by 128 respondents. The top 10 priorities were developed at a consensus meeting of stakeholders and included a focus on quality of life, psychological support, the impact on carers, role of the charity sector and managing prognostic uncertainty. Ranked priorities by physicians and patients were remarkably divergent.CONCLUSIONS: Engaging stakeholders in setting research priorities led to a novel set of research questions that might not have otherwise been considered. These priorities can be used by researchers and funders to direct future research towards the areas which matter most to people living with advanced HF.

AB - OBJECTIVE: To determine research priorities in advanced heart failure (HF) for patients, carers and healthcare professionals.METHODS: Priority setting partnership using the systematic James Lind Alliance method for ranking and setting research priorities. An initial open survey of patients, carers and healthcare professionals identified respondents' questions, which were categorised to produce a list of summary research questions; questions already answered in existing literature were removed. In a second survey of patients, carers and healthcare professionals, respondents ranked the summary research questions in order of priority. The top 25 unanswered research priorities were then considered at a face-to-face workshop using nominal group technique to agree on a 'top 10'.RESULTS: 192 respondents submitted 489 responses each containing one or more research uncertainty. Out-of-scope questions (35) were removed, and collating the responses produced 80 summary questions. Questions already answered in the literature (15) were removed. In the second survey, 65 questions were ranked by 128 respondents. The top 10 priorities were developed at a consensus meeting of stakeholders and included a focus on quality of life, psychological support, the impact on carers, role of the charity sector and managing prognostic uncertainty. Ranked priorities by physicians and patients were remarkably divergent.CONCLUSIONS: Engaging stakeholders in setting research priorities led to a novel set of research questions that might not have otherwise been considered. These priorities can be used by researchers and funders to direct future research towards the areas which matter most to people living with advanced HF.

U2 - 10.1136/openhrt-2020-001258

DO - 10.1136/openhrt-2020-001258

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SN - 2053-3624

VL - 7

JO - Open Heart

JF - Open Heart

IS - 1

M1 - e001258

ER -

Research priorities in advanced heart failure: James Lind alliance priority setting partnership

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