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Strengthening clinical cancer research in the United Kingdom.

ABSTRACT: In 1999, 270,000 cases of cancer were registered in the United Kingdom, placing a large burden on the NHS. Cancer outcome data in 1999 suggested that UK survival rates were poorer than most other European countries. In the same year, a Department of Health review noted that clinical trials accrual was poor (<3.5% of incident cases) and hypothesised that increasing research activity might improve outcomes and reduce the variability of outcomes across England. Thus, the National Cancer Research Network (NCRN) was established to increase participation in cancer clinical research.The NCRN was established in 2001 to provide a robust infrastructure for cancer clinical research and improvements in patient care. Remit of NCRN is to coordinate, support and deliver cancer clinical research through the provision of research support staff across England. The NCRN works closely with similar networks in Scotland, Wales and the Northern Ireland. A key aim of NCRN is to improve the speed of research and this was also assessed by comparing the speed of study delivery of a subset of cancer studies opening before and after NCRN was established.Patient recruitment increased through NCRN, with almost 32,000 (12% of annual incident cases) cancer patients being recruited each year. Study delivery has improved, with more studies meeting the recruitment target - 74% compared with 39% before NCRN was established.The coordinated approach to cancer clinical research has demonstrated increased accrual, wide participation and successful trial delivery, which should lead to improved outcomes and care.

SUBMITTER: Stead M

PROVIDER: S-EPMC3101916 | biostudies-other | 2011 May

REPOSITORIES: biostudies-other

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Project description:Biomedical Research Centres (BRCs) are partnerships between healthcare organisations and universities in England. Their mission is to generate novel treatments, technologies, diagnostics and other interventions that increase the country's international competitiveness, to rapidly translate these innovations into benefits for patients, and to improve efficiency and reduce waste in healthcare. As NIHR Oxford BRC (Oxford BRC) enters its third 5-year funding period, we seek to (1) apply the evidence base on how best to support the various partnerships in this large, multi-stakeholder research system and (2) research how these partnerships play out in a new, ambitious programme of translational research.Organisational case study, informed by the principles of action research. A cross-cutting theme, 'Partnerships for Health, Wealth and Innovation' has been established with multiple sub-themes (drug development, device development, business support and commercialisation, research methodology and statistics, health economics, bioethics, patient and public involvement and engagement, knowledge translation, and education and training) to support individual BRC research themes and generate cross-theme learning. The 'Partnerships' theme will support the BRC's goals by facilitating six types of partnership (with patients and citizens, clinical services, industry, across the NIHR infrastructure, across academic disciplines, and with policymakers and payers) through a range of engagement platforms and activities. We will develop a longitudinal progress narrative centred around exemplar case studies, and apply theoretical models from innovation studies (Triple Helix), sociology of science (Mode 2 knowledge production) and business studies (Value Co-creation). Data sources will be the empirical research studies within individual BRC research themes (who will apply separately for NHS ethics approval), plus documentary analysis and interviews and ethnography with research stakeholders. This study has received ethics clearance through the University of Oxford Central University Research Ethics Committee.We anticipate that this work will add significant value to Oxford BRC. We predict accelerated knowledge translation; closer alignment of the innovation process with patient priorities and the principles of responsible, ethical research; reduction in research waste; new knowledge about the governance and activities of multi-stakeholder research partnerships and the contexts in which they operate; and capacity-building that reflects the future needs of a rapidly-evolving health research system.

Project description:Clinical Research Networks (CRNs) are means to improve healthcare delivery, quality of care and patient outcomes. The Oswaldo Cruz Foundation (Fiocruz), Latin America's leading health research organization, has established a CRN to promote interaction and collaboration among its clinical research experts. After a decade of operation, a revitalization process was undertaken out of the need to improve its functionality. This study aimed to describe the evaluation process of the Fiocruz Clinical Research Network (RFPC) by gathering the opinions and perspectives of its members and identifying the network structure. The goal was to improve scientific collaboration and member engagement, thereby increasing the integration, effectiveness, and impact of clinical research conducted at the institution. Clinical research professionals at Fiocruz were invited to participate in an online questionnaire to collect information about their professional experience, the benefits and constraints of participating in research networks, relevant discussion topics, and the challenges of complying with Good Clinical Practices (GCP). With the help of social network analysis, a deeper understanding of the dynamics and structure of professional communication networks was obtained. The questionnaire was completed by 122 professionals (response rate 50.4%), with most respondents being principal investigators (PIs) with more than 10 years of professional experience (24.6%). Participation in research networks was considered beneficial, particularly in working groups (48.4%), and as an opportunity to exchange experiences with other professionals (44.3%). Almost half of the participants (48.4%) did not identify any barriers to participating in a network. Topics that required further discussion included data management, biorepositories and biobanks, and ethical and regulatory issues. Challenges to conducting clinical research with GCP standards included strategic support and funding, staffing and training, data management, infrastructure, quality management, and collaboration. Communication within the research network was loosely structured, with the most experienced professionals holding central positions. This analysis provided valuable insights to support the management of the RFPC. It highlighted the internal community's interests and expectations, identified key areas for improvement in GCP implementation, and influential professionals who could improve information sharing and national integration. The findings have far-reaching implications that can be applied in different contexts. They contribute to the ongoing discussion on the establishment and management of research networks.

Project description:BACKGROUND:The National Neonatal Research Database (NNRD) is a rich repository of pre-defined clinical data extracted at regular intervals from point-of-care, clinician-entered electronic patient records on all admissions to National Health Service neonatal units in England, Wales, and Scotland. We describe population coverage for England and assess data completeness and accuracy. METHODS:We determined population coverage of the NNRD in 2008-2014 through comparison with data on live births in England from the Office for National Statistics. We determined the completeness of seven data items on the NNRD. We assessed the accuracy of 44 data items (16 patient characteristics, 17 processes, 11 clinical outcomes) for infants enrolled in the multi-centre randomised controlled trial, Probiotics in Preterm Study (PiPs). We compared NNRD to PiPs data, the gold standard, and calculated discordancy rates using predefined criteria, and sensitivity, specificity and positive predictive values (PPV) of binary outcomes. RESULTS:The NNRD holds complete population data for England for infants born alive from 25+0 to 31+6 (completed weeks) of gestation; and 70% and 90% for those born at 23 and 24 weeks respectively. Completeness of patient characteristics was over 90%. Data were linked for 2257 episodes of care received by 1258 of the 1310 babies recruited to PiPs. Discordancy rates were <5% for 13/16 patient characteristics (exceptions: mode of delivery 8.7%; maternal ethnicity 10.2%, Lower layer Super Output Area 16.5%); <5% for 9/16 processes (exceptions: medical treatment for Patent ductus arteriosus 6.1%, high-dependency days 10.2%, central line days 11.2%, type of first milk 22.3%; and during first 14 days, summary of types of milk 13.8%; number of days of antibiotics 9.0%; whether antacid given 5.1%); and <5% for 10/11 clinical outcomes (exception: Bronchopulmonary dysplasia, defined as oxygen dependency at 36 weeks postmenstrual age 3.3%). The specificity of NNRD data was >85% for all outcomes; sensitivity ranged from 50-100%; PPV ranged from 58.8 (95% CI 40.8-75.4%) for porencephalic cyst to 99.7 (95% CI 99.2, 99.9%) for survival to discharge. CONCLUSIONS:The completeness and quality of data held in the NNRD is high, providing assurance in relation to use for multiple purposes, including national audit, health service evaluations, quality improvement, and research.

Project description:BackgroundOne in seven people living in the United Kingdom (UK) is an international migrant, rendering migrants an important population group with diverse and dynamic health and healthcare needs. However, there has been no attempt to map contemporary trends within migration health research conducted in the UK. The aim of this scoping review was to describe trends within migration health research and identify gaps for future research agendas.MethodsPubMed and Embase were systematically searched for empirical research with a primary focus on the concepts "health" and "migrants" published between 2001 and 2019. Findings were analysed using the UCL-Lancet Commission on Migration and Health Conceptual Framework for Migration and Health.ResultsIn total, 399 studies were included, with almost half (41.1%; 164/399) published in the last five years of the study period between 2015 and 2019 and a third (34.1%; 136/399) conducted in London. Studies included asylum seekers (14.8%; 59/399), refugees (12.3%; 49/399), and undocumented migrants or migrants with insecure status (3.5%; 14/399), but most articles (74.9%; 299/399) did not specify a migrant sub-group. The most studied health topics were specific disease outcomes such as infectious diseases (24.1% of studies) and mental health (19.1%) compared to examining systems or structures that impact health (27.8%), access to healthcare (26.3%), or specific exposures or behaviours (35.3%).ConclusionsThere has been a growing interest in migration health. Ensuring a diverse geographic distribution of research conducted in the UK and disaggregation by migrant sub-group is required for a nuanced and region-specific understanding of specific health needs, interventions and appropriate service delivery for different migrant populations. More research is needed to understand how migration policy and legislation intersect with both the social determinants of health and access to healthcare to shape the health of migrants in the UK.

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Strengthening clinical cancer research in the United Kingdom.

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