Tackling treatment uncertainties together: the evolution of the James Lind Initiative, 2003–2013

Chalmers, Iain; Atkinson, Patricia; Fenton, Mark; Firkins, Lester; Crowe, Sally; Cowan, Katherine

doi:10.1177/0141076813493063

Cited by 91 publications

(86 citation statements)

References 57 publications

(57 reference statements)

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“…Topics suggested were remarkably similar between the two surveys, using different terms as one might expect between a professional and young person population, and comparison of the two groups identifies a shared priority list that places fertility preservation in the top six, research about cancer in the top three, and timely diagnosis in the top seven. For both groups communication, clinical trial entry, long-term follow up care, education and vocation also featured, but only the young people mentioned the effect on family and friends, and financial worries: further evidence of the need to include both 'professional' and 'patient' expert views in research setting exercises to ensure a complete and comprehensive list is obtained (Chalmers et al, 2013;Galán et al, 2016).…”

Section: Discussionmentioning

confidence: 99%

Multi-Professional Perspectives on Adolescent and Young Adult Oncology Across Europe: An e-Delphi Survey

Pini

Fern

Morgan

et al. 2017

Journal of Adolescent and Young Adult Oncology

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Abstract:The aims of this paper are to describe the ongoing development of teenage and young adult cancer (TYA) services within the European Union, and develop consensus on key areas within the field. This survey used an e-Delphi design. An initial survey was distributed via email to professionals working in Europe. A snowball sampling technique was used to promote distribution. Consensus was sought over three rounds from October 2012 -April 2015. Consensus was defined as > 80% agreement ("agree" or "strongly agree"). Sixty professionals participated in round one, 106 in round two and 61 in round three. Twenty-six countries were represented across all rounds. Consensus was achieved for; the need for national policy guidance, the importance of patient choice, the validity of the International Charter of Rights for Young People and some aspects of multi-disciplinary working. There was 75% agreement on a single definition of the patient age range within TYA cancer care.European professionals with expertise in TYA cancer care reached consensus upon key elements of care for this group. The optimal TYA age-range remained an elusive topic on which to agree. The broad engagement and interest in TYA cancer across the EU through the ENCCA network was also demonstrated.4

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Section: Discussionmentioning

confidence: 99%

Multi-Professional Perspectives on Adolescent and Young Adult Oncology Across Europe: An e-Delphi Survey

Pini

Fern

Morgan

et al. 2017

Journal of Adolescent and Young Adult Oncology

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“…The National Institutes of Neurological Disorders and Stroke (NINDS) are leading an effort to make trial selection more explicit and rationale in its Immediate Practice-Altering Clinical Trials (ImPACT) pilot program (22), and metrics for the public health impact of clinical trials have been developed (23). The James Lind Alliance (24) seeks to establish priority setting partnerships for a wide range of health problems, by bringing together stakeholders to identify the most important uncertainties. Of relevance to neurology, such partnerships have been established to set research priorities for cavernous malformations, dementia, multiple sclerosis, neuro-oncology, Parkinson's disease, spinal cord injury, and stroke (25).…”

Section: Research Prioritisationmentioning

confidence: 99%

Increasing value and reducing waste in stroke research

Berge

Salman

Worp

et al. 2017

The Lancet Neurology

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SummaryStroke represents a major burden to patients and society, and resources spent on stroke research must be used efficiently and produce good value in terms of improvements in human health.However, there are many examples of poor value from stroke research funding, which result from the way in which stroke research has been chosen, designed, conducted, analysed, regulated, managed, disseminated, or reported. In a project including a survey and a symposium and involving stroke researchers in the European Stroke Organisation we have sought to identify sources of inefficiency and waste, recommended approaches to increase value, and highlighted examples of best practice in stroke research. Recent evidence suggests that progress has been made, but there is room for much improvement, and stroke researchers, funders and other stakeholders might consider our recommendations when planning new research. Policy View 3

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“…Quizá la RIA, y no sólo en el campo cardiovascular, debería abordar mejor el estudio de los mecanismos por los que las investigaciones financiadas privadamente se transfieren a la práctica clínica y a la sociedad en general, no necesariamente superponibles a los usados por la investigación financiada públicamente. La elección y priorización de temas de investigación según la fuente financiadora puede entrar también en el campo de estudio de la RIA (se ha visto que la investigación sobre fármacos y dispositivos es más favorecida como prioritaria por organismos académicos e industrias privadas, mientras que los consumidores reclaman más estudios o profundización de cuestiones como la educación, los servicios sanitarios, la dieta, el ejercicio y las intervenciones psicológicas y conductuales) 14 . Y finalmente, los estudios sobre el rendimiento económico de la investigación (ya hemos visto que fueron pioneros en la RIA aplicada a la cardiopatía coronaria) deberían probablemente diversificarse para ofrecer un auténtico panorama de los beneficios generados y su distribución social.…”

Section: Perspectivas De La Ria En Investigación Cardiovascularunclassified