Involving patients and the public in healthcare operational research—The challenges and opportunities

Pearson, Mark; Monks, Thomas; Gibson, Andy; Allen, Michael; Komashie, Alexander; Fordyce, Andrew; Harris-Golesworthy, Faith; Pitt, Martin; Brailsford, Sally C.; Stein, Ken

doi:10.1016/j.orhc.2013.09.001

Cited by 29 publications

(31 citation statements)

References 18 publications

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“…For EcLiPSE, we felt that a qualitative study was necessary in addition to PPI to ensure that the trial was informed by systematic exploration and analysis of the perspectives of a diverse group of parents, whose experiences were pertinent to the trial. This provided insight into how parents may view EcLiPSE when they are approached about it and helped us to identify strategies to enhance recruitment and parent understanding 28 61. We anticipate that this insight could not have been achieved through the involvement of PPI representatives alone.…”

Section: Discussionmentioning

confidence: 99%

Doing challenging research studies in a patient-centred way: a qualitative study to inform a randomised controlled trial in the paediatric emergency care setting

et al. 2014

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ObjectiveTo inform the design of a randomised controlled trial (called EcLiPSE) to improve the treatment of children with convulsive status epilepticus (CSE). EcLiPSE requires the use of a controversial deferred consent process.DesignQualitative interview and focus group study.Setting8 UK support groups for parents of children who have chronic or acute health conditions and experience of paediatric emergency care.Participants17 parents, of whom 11 participated in telephone interviews (10 mothers, 1 father) and 6 in a focus group (5 mothers, 1 father). 6 parents (35%) were bereaved and 7 (41%) had children who had experienced seizures, including CSE.ResultsMost parents had not heard of deferred consent, yet they supported its use to enable the progress of emergency care research providing a child's safety was not compromised by the research. Parents were reassured by tailored explanation, which focused their attention on aspects of EcLiPSE that addressed their priorities and concerns. These aspects included the safety of the interventions under investigation and how both EcLiPSE interventions are used in routine clinical practice. Parents made recommendations about the appropriate timing of a recruitment discussion, the need to individualise approaches to recruiting bereaved parents and the use of clear written information.ConclusionsOur study provided information to help ensure that a challenging trial was patient centred in its design. We will use our findings to help EcLiPSE practitioners to: discuss potentially threatening trial safety information with parents, use open-ended questions and prompts to identify their priorities and concerns and clarify related aspects of written trial information to assist understanding and decision-making.

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Section: Discussionmentioning

confidence: 99%

Doing challenging research studies in a patient-centred way: a qualitative study to inform a randomised controlled trial in the paediatric emergency care setting

et al. 2014

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“…Health services research and development are intrinsically linked, and PPI has the potential to (1) create more democratic research processes and (2) be a transformative experience for participants (Dewar, 2005). Service users are in a unique position to co-design services, improve quality and safety, minimise costs on inappropriate design, and highlight issues of accessibility and acceptability (Pearson et al, 2013). However, people with aphasia (PWA) are often excluded from such research and service design initiatives because of their communication disability.…”

Section: Introductionmentioning

confidence: 99%

“Who decides what criteria are important to consider in exploring the outcomes of conversation approaches? A participatory health research study”

2015

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BackgroundOne of the most devastating consequences of aphasia is the disruption to normal conversation. The Conversation Partner Programme emphasises communicative competence and life participation. Currently there is no recognised system for evaluating this intervention. Following policy imperatives for patient and public involvement, it is important to include service users in the development of evaluation criteria. However, people with aphasia are often excluded from such research and service development initiatives because of their communication disability. This study was designed to include people with aphasia and other key stakeholders as co-researchers in the development of evaluation criteria for a Conversation Partner Programme. AimsTo describe the multi-perspectival co-generation of Conversation Partner Programme evaluation criteria using a participatory research approach. Methods & ProceduresFollowing a pilot study, the generation and analysis of qualitative data involved a Participatory Learning and Action (PLA) approach based on the interpretive paradigm. Using purposeful sampling participants (n = 20) included: people with aphasia (n = 5); speech and language therapists (n = 5); speech and language therapy graduates and undergraduates (n = 9) and university coordinator (n = 1). Through (n = 18) individual and interstakeholder data generation episodes (PLA focus groups and interviews) using participatory techniques (Flexible Brainstorming, Card Sort, Direct Ranking, Seasonal Calendar), evaluation criteria were identified. The R. Mc Menamin et al. 2015principles of thematic analysis guided the co-analysis of data with participants. Data generated in Ireland were presented to an international inter-stakeholder group at Connect, UK, for preliminary exploration of transferability of findings. Outcomes & ResultsConversation Partner Programme evaluation criteria agreed and prioritised by co-researchers in order of importance included: (1) shared understanding of structure, (2) clarity about the programme, (3) agreed evaluation mechanism, (4) linking with other organisations, and (5) feedback. "Shared Understanding of Structure" was ranked the most important criterion and related to the nature and number of participants, opportunities for group meetings, socialising, and stakeholder interaction."Feedback", the criterion ranked least important, detailed responsibilities about summarising programme experiences and sharing this information between stakeholders. ConclusionsPeople with aphasia and other key stakeholders were meaningfully involved in the identification of evaluation criteria for a Conversation Partner Programme. The outcomes of this collaborative work bridge the gap between policy imperatives around involvement and actual practice and will impact the design, delivery, and evaluation of the programme for all stakeholders. Findings will be of interest to professionals in this clinical area and to those exploring innovative methodologies to include marginalised service users, especially pe...

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“…The rarity of effective patient and public involvement in modelling and simulation is also disappointing and an important area for further development 55. Strengthening partnerships with health organisations and service users is a priority for increasing the relevance and application of academic systems modelling.…”

Section: Discussionmentioning

confidence: 99%

Systems modelling and simulation in health service design, delivery and decision making

et al. 2015

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The ever increasing pressures to ensure the most efficient and effective use of limited health service resources will, over time, encourage policy makers to turn to system modelling solutions. Such techniques have been available for decades, but despite ample research which demonstrates potential, their application in health services to date is limited. This article surveys the breadth of approaches available to support delivery and design across many areas and levels of healthcare planning. A case study in emergency stroke care is presented as an exemplar of an impactful application of health system modelling. This is followed by a discussion of the key issues surrounding the application of these methods in health, what barriers need to be overcome to ensure more effective implementation, as well as likely developments in the future.

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Involving patients and the public in healthcare operational research—The challenges and opportunities

Cited by 29 publications

References 18 publications

Doing challenging research studies in a patient-centred way: a qualitative study to inform a randomised controlled trial in the paediatric emergency care setting

Doing challenging research studies in a patient-centred way: a qualitative study to inform a randomised controlled trial in the paediatric emergency care setting

“Who decides what criteria are important to consider in exploring the outcomes of conversation approaches? A participatory health research study”

Systems modelling and simulation in health service design, delivery and decision making

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