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

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

Matching a community assessment tool to the requirements of practice

Over the last two decades, performance-based metrics have been applied in master planning as a means to estimate the impacts of large-scale development on the local and global environment. Community sustainability assessment has developed to provide a practical method for assessing the performance of a spatial master plan against an array of sustainability indicators. This paper considers the adequacy of such a tool to provide reliable information when and as required for decision-making in the planning process. It reviews Breeam (building research establishment environmental assessment method) Communities 2012 specifically examining whether this tool provides an analysis which is strategic, comprehensive and integrated. Breeam 2012 is found to be adequately comprehensive in the current operational context of the British planning system. The sustainability assessment model can usefully inform decision-making at the strategic ‘stage gates’ of master planning. However, the analytical methodology of the assessment model is inherently fractional. This complicates how a ‘balanced’ evaluation of the relative importance of sustainability issues is reached and agreed. It is suggested that a project culture of trans-disciplinary dialogue and explorative learning is required to promote the understanding and use of sustainability assessment practice in master planning

Can Whole Brain Radiotherapy be omitted from the treatment of Non-Small Cell Lung Cancer patients with brain metastases not amenable to stereotactic radiotherapy or surgery?:Results from the UK Medical Research Council QUARTZ randomised clinical trial

Background Whole brain radiotherapy (WBRT) and dexamethasone are widely used to treat brain metastases from non-small cell lung cancer (NSCLC), although there have been no randomised clinical trials (RCTs) demonstrating that WBRT improves either quality of life (QoL) or overall survival (OS). Methods QUARTZ (Quality of Life after Radiotherapy and Steroids) was a non-inferiority, phase III randomised clinical trial (ISRCTN: 3826061) with a primary outcome measure of quality adjusted life years (QALYs). NSCLC patients with brain metastases unsuitable for surgical resection or stereotactic radiotherapy were randomly allocated (1:1) to optimal supportive care including dexamethasone plus WBRT (20 Gy/5 daily fractions) (OSC+WBRT) or OSC alone (including dexamethasone.) QALYs were generated from OS and patients’ weekly completion of the EQ-5D questionnaire. OSC alone was considered non-inferior if no more than 7 QALY days worse, which required 534 patients (80% power, 5% (one-sided) significance level). Findings Between 2007 and 2014, 538 patients were recruited from 69 UK and 3 Australian centres. Baseline characteristics were balanced between arms: male 58%; median age 66 years (range 38 – 85); Karnofsky performance status &gt; 70 62%. There was no evidence of a difference in the rate of adverse events between the two groups. By October 2015, 536 patients had died. There was no evidence of a difference in OS (hazard ratio 1•06 (95% CI 0•90 – 1•26)), overall QoL, or steroid use between the 2 groups. The difference between the mean QALYs was 4•7 days (OSC+WBRT 46•4 QALY days vs OSC 41•7 QALY days), two-sided 90% CI of the difference -12•7 to +3•3 QALY days. Pre-specified subgroup analyses suggested a trend to benefit from WBRT in younger, better performance status patients. Interpretation Although the primary outcome measure result includes the pre-specified non-inferiority margin, the combination of the small difference in QALYs and the absence of a difference in survival and QoL between the 2 arms suggests that WBRT provides little additional clinically significant benefit for this patient group

Abstract LB-60: A Local Consumer Research Panel's Role in the work of the National Institute for Health Research (NIHR) in the U.K

Abstract The poster explains how patient advocacy fits into the world of health research, the relationship between research networks, and how research is planned at both the national and local levels in the United Kingdom. It describes the role of a local consumer research panel in helping to enhance research for maximum patient benefit. David Ardon has been a member and chair of a local panel for eight years and of the national consumer research group for seven years. The poster explains where in the research cycle patients and caregivers have been active, demonstrating the logos of local and national research organizations, and in diagrammatic form, showing the kind of activities that a consumer researcher tackles. The North Trent Cancer Research Network Consumer Research Panel was established in 2001 by the Academic Unit of Supportive Care at the University of Sheffield. North Trent is an area in the North East Midlands of England. The panel works alongside and is a constituent of the National Cancer Research Institute Consumer Liaison Group. The panel, composed of 40 past and current cancer patients and caregivers, is funded by the North Trent Cancer Network and the South Yorkshire CLRN to provide a consumer perspective at strategic meetings within North Trent and for individual research studies within the network. The panel has hosted and led ten conferences aimed at raising awareness of clinical research. The objective of the panel is to improve the quality of communication and information exchange between health care professionals, patients, and caregivers by providing a consumer perspective at all stages of cancer research and clinical trials. The governing body of health research in the U.K. is the National Institute for Health Research, which monitors eight research areas, one of which is cancer. Cancer research is governed and managed by the National Cancer Research Institute (NCRI), and the National Cancer Research Network (NCRN). Health research locally is delivered by a Comprehensive Local Research Network (CLRN). Mr. Ardon's local CLRN is the South Yorkshire CLRN, and this group includes the North Trent Cancer Research Network. Citation Format: {Authors}. {Abstract title} [abstract]. In: Proceedings of the 102nd Annual Meeting of the American Association for Cancer Research; 2011 Apr 2-6; Orlando, FL. Philadelphia (PA): AACR; Cancer Res 2011;71(8 Suppl):Abstract nr LB-60. doi:10.1158/1538-7445.AM2011-LB-60</jats:p

Spirocyclic peptides at the anomeric position of mannofuranose

The first syntheses of two diketopiperazine peptides containing an α-amino in which the α-carbon is also the anomeric carbon of a carbohydrate are described; studies on the kinetic and thermodynamic stability of the spirocyclic dipeptides are reported. © 1994

Tri- and tetra-peptides incorporating an α-amino acid at the anomeric position of mannofuranose

The first examples of peptides containing an α-amino acid residue in which the α-carbon is also the anomeric position of a carbohydrate are described. © 1994