Future of Health: Findings from a survey of stakeholders on the future of health and healthcare in England

Corbett, Jennie; d'Angelo, Camilla; Gangitano, Lorenzo; Freeman, Jon

doi:10.7249/rr2147

Cited by 21 publications

(20 citation statements)

References 5 publications

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“…This study design and the Delphi method are increasingly being recognised as a robust approach to forming COSs [ 20 ]. This study will capture the views of people living with dementia, who, along with the other stakeholders, will come to a consensus around what outcomes should be measured in relation to non-pharmacological and community-based programmes.…”

Section: Discussionmentioning

confidence: 99%

“…Furthermore, existing measures may not detect, or include, outcomes that are important and meaningful to people with dementia, whose perspectives are often not represented [ 19 , 20 ]. More generally, although recent evidence suggests patient or public involvement in identifying priorities and outcomes of importance is still an emerging area [ 20 ], it is often not done [ 7 , 15 ] or implemented poorly [ 21 ]. Yet, studies that have done so have identified outcomes that were not previously identified by clinicians [ 22 ].…”

Section: Introductionmentioning

confidence: 99%

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Developing a core outcome set for people living with dementia at home in their neighbourhoods and communities: study protocol for use in the evaluation of non-pharmacological community-based health and social care interventions

Harding

Morbey

Ahmed

et al. 2018

Trials

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BackgroundThe key aim of the study is to establish an agreed standardised core outcome set (COS) for use when evaluating non-pharmacological health and social care interventions for people living at home with dementia.Methods/designDrawing on the guidance and approaches of the Core Outcome Measures in Effectiveness Trials (COMET), this study uses a four-phase mixed-methods design:Focus groups and interviews with key stakeholder groups (people living with dementia, care partners, relevant health and social care professionals, researchers and policymakers) and a review of the literature will be undertaken to build a long list of outcomes.Two rounds of Delphi surveys will be used with key stakeholder groups. Statements for the Delphi surveys and participation processes will be developed and informed through substantial member involvement with people living with dementia and care partners. A consensus meeting will be convened with key participant groups to discuss the key findings and finalise the COS.A systematic literature review will be undertaken to assess the properties of tools and instruments to assess components of the COS. Measurement properties, validity and reliability will be assessed using the Consensus-based Standards for the Selection of Health Measurement (COSMIN) and COMET guidance.A stated preference survey will elicit the preferences of key stakeholders for the outcomes identified as important to measure in the COS.DiscussionTo the best of our knowledge, this study is the first to use a modified Delphi process to involve people living with dementia as a participant group. Though the study is confined to collecting data in the United Kingdom, use of the COS by researchers will enhance the comparability of studies evaluating non-pharmacological and community-based interventions.Trial registrationThe study is registered on the COMET initiative, registered in 2014 at comet-initiative.org.Electronic supplementary materialThe online version of this article (10.1186/s13063-018-2584-9) contains supplementary material, which is available to authorized users.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Developing a core outcome set for people living with dementia at home in their neighbourhoods and communities: study protocol for use in the evaluation of non-pharmacological community-based health and social care interventions

Harding

Morbey

Ahmed

et al. 2018

Trials

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“…207 In more recent years, patient demand (due to patient empowerment) has also been an important driver of product and service innovation, with healthcare services increasingly becoming more person-and patient-centred. 208 On the supply-side, pharmaceutical firms' desire to find ways to increase their productivity and reduce the rising costs of drug development contribute to organisational innovation. 209 For example, firms are experimenting with process innovation in new clinical trial designs to reduce the costs of clinical trials, but also to adapt to the rising trend of personalised medicines and advanced therapeutics, 210 and provide healthcare providers 'real-world' evidence about the value of medicines.…”

Section: There Are Both Demand-side and Supply-side Drivers Of Pharmamentioning

confidence: 99%

Evidence synthesis on the conditions needed to translate research and drive innovation

d'Angelo¹,

Knack²,

MacLure³

et al. 2018

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“…The Core Outcome Measures in Effectiveness Trials (COMET) Initiative website describes a COS as a set of outcomes that should be measured and reported, as a minimum, in all clinical trials, and, where appropriate, clinical audit or research on interventions other than randomised trials, of a specific condition. However, existing measures may not include outcomes that are of importance to people living with dementia, whose perspectives are often not represented [12–15] or are represented poorly [16, 17]. With approximately two thirds of people with dementia living at home, existing studies may not meaningfully reflect outcome measures of importance to people with dementia living at home.…”

Section: Introductionmentioning

confidence: 99%

Involving people living with dementia in research: an accessible modified Delphi survey for core outcome set development

Morbey

Harding

Swarbrick

et al. 2019

Trials

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BackgroundRecent recommendations promote the inclusion of people living with dementia beyond the role of ‘participant’ to involvement in all areas of the research process. This reflects shifts in dementia studies from ‘research on’ to ‘research with’ people living with the condition. In this paper, we describe the design process and features of a modified Delphi survey devised through consultation with people living with dementia.MethodsThis article focusses on consultation with people living with dementia and care partners to design an accessible Delphi survey to facilitate participation in core outcome set development. We used the COINED model of co-research developed through the ESRC/NIHR Neighbourhoods and Dementia Study to structure consultation on three features of modified Delphi design. Consultation was achieved through 1:1 and group sessions with a total of 28 individuals (18 people living with dementia and seven care partners).ResultsA flexible, responsive and adaptive approach to ongoing consultation with people living with dementia and care partners through 1:1 face-to-face sessions facilitated: (1) the development of a 3-point non-categorical importance scale; (2) the translation of 54 outcome areas into ‘accessible statements’ for a two-round Delphi survey administered to five stakeholder groups (people living with dementia, care partners, health and social care professionals, policy-makers and researchers); and (3) the delivery of a Delphi survey. These features of core outcome set development facilitated the involvement of people living with dementia in study design and as research participants in the data collection phase.ConclusionsInvolvement of people living with dementia as a key stakeholder group is not reflected in studies using Delphi survey methods for core outcome set development. Time, resources, researcher expertise and support, underpinned through targeted funding facilitate meaningful and productive inclusive approaches, now an expectation of dementia research.Trial registrationThe study is registered on the COMET Initiative.

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Future of Health: Findings from a survey of stakeholders on the future of health and healthcare in England

Cited by 21 publications

References 5 publications

Developing a core outcome set for people living with dementia at home in their neighbourhoods and communities: study protocol for use in the evaluation of non-pharmacological community-based health and social care interventions

Developing a core outcome set for people living with dementia at home in their neighbourhoods and communities: study protocol for use in the evaluation of non-pharmacological community-based health and social care interventions

Evidence synthesis on the conditions needed to translate research and drive innovation

Involving people living with dementia in research: an accessible modified Delphi survey for core outcome set development

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