Close to the bench as well as at the bedside: involving service users in all phases of translational research

Callard, Felicity; Rose, Diana; Wykes, Til

doi:10.1111/j.1369-7625.2011.00681.x

Cited by 104 publications

(104 citation statements)

References 48 publications

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“…39 Callard et al 172 argue that failing to have PPI in the early stages of translational research may result in failing to capitalise on the potential contributions lay representatives could make, including ensuring that the end product of bench research must be appropriately designed for the end-user, and that ethical issues arising between any DOI: 10.3310/hsdr03380 HEALTH SERVICES AND DELIVERY RESEARCH 2015 VOL. 3 NO.…”

Section: Patient and Public Involvement: Is It Always Needed?mentioning

confidence: 99%

“…Not everyone believed that PPI was essential to each stage of a study or was persuaded that benefits far outweighed potential risks, particularly for studies nearer the laboratory end of the 'bench to bedside continuum'. 172 Arguments for seeing PPI as less essential or more risky included there being a lack of evidence of PPI effectiveness in this type of research. However, our analysis suggested that underpinning this assertion were several researcher beliefs, including that lay representatives would not be comfortable with the more basic science and that they lack the knowledge to understand it.…”

Section: Patient and Public Involvement: Is It Always Needed?mentioning

confidence: 99%

See 1 more Smart Citation

ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

Wilson

Mathie

Keenan

et al. 2015

Health Serv Deliv Res

228

281

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BackgroundPatient and public involvement (PPI) is a prerequisite for many funding bodies and NHS research ethics approval. PPI in research is defined as research carried out with or by the public rather than to, about or for them. While the benefits of PPI have been widely discussed, there is a lack of evidence on the impact and outcomes of PPI in research.ObjectivesTo determine the types of PPI in funded research, describe key processes, analyse the contextual and temporal dynamics of PPI and explore the experience of PPI in research for all those involved. Mechanisms contributing to the routine incorporation of PPI in the research process were assessed, the impact of PPI on research processes and outcomes evaluated, and barriers and enablers to effective PPI identified.DesignA three-staged realist evaluation drawing on Normalisation Process Theory to understand how far PPI was embedded within health-care research in six areas: diabetes mellitus, arthritis, cystic fibrosis, dementia, public health and learning disabilities. The first two stages comprised a scoping exercise and online survey to chief investigators to assess current PPI activity. The third stage consisted of case studies tracked over 18 months through interviews and document analysis. The research was conducted in four regions of England.ParticipantsNon-commercial studies currently running or completed within the previous 2 years eligible for adoption on the UK Clinical Research Network portfolio. A total of 129 case study participants included researchers and PPI representatives from 22 research studies, and representatives from funding bodies and PPI networks.ResultsIn the scoping 51% (n = 92) of studies had evidence of PPI and in the survey 79% (n = 80), with funder requirements and study design the strongest influence on the extent of PPI. There was little transparency about PPI in publicly accessible information. In case studies, context–mechanism–outcome configurations suggested that six salient actions were required for effective PPI. These were a clear purpose, role and structure for PPI; ensuring diversity; whole research team engagement with PPI; mutual understanding and trust between the researchers and lay representatives; ensuring opportunities for PPI throughout the research process; and reflecting on, appraising and evaluating PPI within a research study. PPI models included a ‘one-off’ model with limited PPI, a fully intertwined model in which PPI was fully embedded and an outreach model with lay representatives linking to broader communities. Enabling contexts included funder, topic/design, resources, research host, organisation of PPI and, most importantly, relationships. In some case studies, lack of coherence in defining PPI persisted, with evidence of a dual role of PPI representative/study participant. Evidence of PPI outcomes included changes to study design, improvements to recruitment materials and rates, and dissemination.ConclusionsSix salient actions were required for effective PPI and were characterised by a shared understanding of moral and methodological purposes of PPI, a key individual co-ordinating PPI, ensuring diversity, a research team positive about PPI input and fully engaged with it, based on relationships that were established and maintained over time, and PPI being evaluated in a proactive and systematic approach. Future work recommendations include exploring the impact of virtual PPI, cost analysis and economic evaluation of the different models of PPI, and a longer-term follow-up study of the outcomes of PPI on research findings and impact on services and clinical practice.FundingThe National Institute for Health Research Health Services and Delivery Research programme.

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Section: Patient and Public Involvement: Is It Always Needed?mentioning

confidence: 99%

Section: Patient and Public Involvement: Is It Always Needed?mentioning

confidence: 99%

ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

Wilson

Mathie

Keenan

et al. 2015

Health Serv Deliv Res

228

281

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“…Longerterm outcomes typically have complex causes that are difficult to trace back to one research study, let alone the engagement of patients or other stakeholders in the research enterprise [27]. Beyond clarifying the goals for Research quality and research process [28,43,44] Improved quality and validity from engaging patients [45] Enhanced credibility and improved the research [46] 85% of patients and researchers (n = 59) agreed that the quality of research improved [41] New funding and funding opportunities [41,47] Patients' contributions on research proposal, lay language summary and encouragement for reapplying [48] None reportedResearch topic, priorities and/or resource allocation become more appropriate/relevant to patients [38,[49][50][51][52] Patients suggested research ideas and provided feedback on usefulness of research to the benefit of the research process [48] Improved relevance of research ideas and topics [45] Identification of study topics by patients was an impetus for research [53] None reportedResearch questions, hypotheses, interventions and medical technologies become more relevant/usable for patients [1,54,55] Patients' experiential knowledge helped shape research question [23] None reportedResearch design, methods and study procedures become more appropriate, sensitive and ethically acceptable [9,17,21,34,38,41,51,[55][56][57] Patient research partners provided insight/access into social networks, patient organizations and the healthcare field [23] Patients helped translate scientific jargon into plain language materials [23] Patients provided feedback on intervention design and data collection instrument [48] None reported Recruitment, accrual rates and retention improves [9,…”

mentioning

confidence: 99%

Evaluating patient and stakeholder engagement in research: moving from theory to practice

2015

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Despite the growing demand for research that engages stakeholders, there is limited evidence in the literature to demonstrate its value -or return on investment. This gap indicates a general lack of evaluation of engagement activities. To adequately inform engagement activities, we need to further investigate the dividends of engaged research, and how to evaluate these effects. This paper synthesizes the literature on hypothesized impacts of engagement, shares what has been evaluated and identifies steps needed to reduce the gap between engagement's promises and the underlying evidence supporting its practice. This assessment provides explicit guidance for better alignment of engagement's promised benefits with evaluation efforts and identifies specific areas for development of evaluative measures and better reporting processes. Keywords: comparative effectiveness research • evaluation • patient engagement • patient-centered outcomes research • PCOR • review • stakeholder engagement BackgroundEngagement of patients and other healthcare stakeholders (herein, stakeholder partners) is increasingly recognized as essential to patient-centered comparative effectiveness research (CER), which is intended to answer questions of importance to patients and their caregivers [1]. Often described as researchers doing research with patients, rather than for, at or to them [2][3][4], patient-engaged research implies a level of involvement that extends beyond the role of research subject [5]. This shift has been fueled in part by the 2010 creation of the Patient-Centered Outcomes Research Institute (PCORI) by Congress with the passage of the Patient Protection and Affordable Care Act. PCORI is committed to producing and promoting high-integrity CER that is 'guided by patients, caregivers, and the broader healthcare community.' [6].The PCORI Methodology Report states that patient engagement can include: defining topics and formulating study questions, identifying a study population and choosing interventions, comparators and outcomes, developing optimal strategies for recruitment and retention of study participants, conducting a study and analyzing results and disseminating research findings into clinical practice [7]. Generally, the value of engaging stakeholder partners in research is that it can help reorient and improve the research enterprise, reduce clinical uncertainty and speed adoption of meaningful findings that hold great promise with the ultimate goal of improving patients' care experience, decision-making and health outcomes [6].Despite the growing interest in and demand for research that engages stakeholder partners -or, 'research done differently,' [8] there is limited evidence in the published literature to demonstrate the value -or return on investment -of this engagement. This evidence gap is reflective of a general lack of evaluation of research engagement activities. In fact, the majority of published research with a stakeholder partner engagement dimension does not include an evaluation component [9][10][11]...

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“…As advisors, they provide enhanced understanding of barriers and facilitators of participation and the environmental and social contexts in which the research will take place. Their knowledge favorably influences the agenda, setting, validity, and feasibility of the research design from the informed consent process to data collection and outcome measures (26). From a pragmatic perspective, participatory research is essential.…”

Section: Stakeholder Engagementmentioning

confidence: 99%

Type 2 Translational Research for CKD

Tuot

Corbett

Setter

et al. 2013

Clinical Journal of the American Society of Nephrology

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SummaryStrategies to effectively treat people with CKD have been identified by conventional clinical research. Despite this evidence, awareness, screening, detection, diagnosis, risk factor control, treatment, and outcomes remain substandard. Translating clinical evidence into actionable measures that reduce the burden of CKD is a pressing need. Expansion from a "bench-to-bedside" paradigm (conventional type 1 translation) to research that encompasses "clinic and community" is the core concept of type 2 translation. Specifically, this is the discipline of identifying factors and using strategies that lead to adoption, maintenance, and sustainability of science-based interventions in practice. This review identifies key elements of type 2 translational research and highlights the current scope of this type of research for CKD. For type 2 translation to achieve the goals of providing high-quality care and better health outcomes, key facilitators (e.g., theory-based frameworks, adaptable interventions, and inclusion of sustainability and evaluation metrics) and essential elements (e.g., multidisciplinary team care, health information technology, and stakeholder engagement) must be integrated. The National Institute of Diabetes and Digestive and Kidney Diseases recently funded five proposals that aim to improve outcomes for people with CKD, focusing on diverse components of the healthcare continuum: patient safety and transitions; delivery of highquality, evidence-based CKD care; and elimination of disparities. The need for type 2 translational research in CKD is urgent because of preventable human suffering and unsustainable costs of providing care. Focus on the theory, framework, and approaches we have suggested may help us meet that challenge.

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Close to the bench as well as at the bedside: involving service users in all phases of translational research

Cited by 104 publications

References 48 publications

ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

ReseArch with Patient and Public invOlvement: a RealisT evaluation – the RAPPORT study

Evaluating patient and stakeholder engagement in research: moving from theory to practice

Type 2 Translational Research for CKD

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