27 research outputs found

    Making patient and public involvement in cancer and palliative care research a reality : academic support is vital for success

    Get PDF
    Objective: Patient and public involvement (PPI)has become an established theme within the UK health research policy and is recognised as an essential force in the drive to improve the quality of services and research. These developments have been particularly rapid in the cancer field. Methods: This paper outlines a model of PPI in research (known as the North Trent Cancer Research Network Consumer Research Panel, NTCRN CRP; comprising 38 cancer and palliative care patients/carers) and the key benefits and challenges to effective PPI in cancer research. Results: The PPI model has become a sustainable, inclusive and effective way of implementing PPI within the cancer context. Challenges include (1) a lack of time and funding available to support the PPI model; (2) tensions between different stakeholder groups when developing and conducting health research; (3) panel members finding it difficult to effectively integrate into research meetings when their role and contribution is not made clear at the outset or when unfamiliar language and jargon are used and not explained; (4) some professionals remain unclear about the role and practical implications of PPI in research. However, notwithstanding its financial and organisational challenges, the way that the NTCRN CRP is supported has provided a solid base for it to flourish. Conclusions: PPI provides considerable opportunities for patients and the public to work collaboratively with professionals to influence the cancer research agenda, with the contribution of PPI to the research process being integral to the entire process from the outset, rather than appended to it.</p

    The convention on biological diversity's ecologically or biologically significant areas: Origins, development, and current status

    No full text
    In 2008, the Convention on Biological Diversity (CBD) adopted seven criteria to identify Ecologically or Biologically Significant Areas (EBSAs) “…in need of protection, in open ocean waters and deep sea habitats”. This paper reviews the history of the development of the “EBSA process”, which was originally driven by the commitment to establish marine protected areas in areas beyond national jurisdiction, but which has since broadened to encompass the possibility of informing marine spatial planning and other activities, both within and beyond national jurisdiction. Additionally, the paper summarizes ongoing efforts through CBD regional workshops to describe EBSAs and the development of the EBSA Repository, where information on these areas is to be stored. The overlap between the EBSA criteria and biodiversity criteria suites used by various authorities in areas beyond national jurisdiction is illustrated. The EBSA process has reached a critical juncture, whereby a large percentage of the global ocean has been considered by the regional workshops, but the procedure by which these areas can be incorporated into formal management structures has not yet been fully developed. Emerging difficulties regarding the mandate to describe, identify, endorse, or adopt EBSAs, are discussed
    corecore