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UKCRC Issue: 9 Autumn 2008 Chief Executive’s In this issue: Message UKCRC Patient & Public Involvement Implementation Plan 2008-09 Page 2 Academic training scheme for nurses, midwives and AHPs Welcome to workforce. Where necessary, announced Page 4 the UKCRC work towards implementing Autumn Update. I’m pleased the recommendations is also Northern Ireland welcomes new Director of R&D Page 8 to say that 2008 is shaping up underway in Scotland, Wales and to be another productive year Northern Ireland. for the Partnership,‘ and once the third and fourth years of the again we have some fantastic There continues to be a great Partnership. An updated UKCRC achievements to report. deal of positive patient and website will also be launched public involvement activity this autumn, to reflect the Two major projects which among the UKCRC Partners and Collaboration’s changing remit have involved joint working by stakeholders. The UKCRC has as we move into our fifth year of UKCRC Partners have come to developed an implementation operation. The new website is fruition recently. In July, major group for patient and public designed to provide an overview infection research consortia involvement over the next year, of the developing environment for were established in London and and on pages 3 and 10 you clinical research in the UK and Oxford with £9m joint funding can read about the launch of a will act as a signpost to more from the Biotechnology and new resource for patients and detailed information on specific Biological Sciences Research the public on clinical trials, and initiatives led by the UKCRC Council, Medical Research a consumer award won by the Partners. Council, National Institute for Medicines for Children Research Health Research and Wellcome Network. Many of the Partnership’s initial Trust. The consortia will focus on tasks are now complete, and as important research areas such There have also been some we move into 2009, the UKCRC as increasing understanding of changes to research leadership Partners are considering whether infectious disease transmission and management in the UK there are areas of activity that and addressing the challenge of recently. Professor Sir John may require continued monitoring healthcare-associated infection. Savill’s appointment as the new and/or a forum for joint working. Chief Scientist for Scotland is As the planned reduction in the In September, the National highlighted on page 7 and this UKCRC Secretariat takes place Institute for Health Research issue also includes a personal over the coming year, the Board announced that a new integrated message from Professor Bernie will be working to ensure that academic training scheme is Hannigan, the new Director of work can continue in these areas to be launched in England for R&D for Health and Social Care where necessary. I am confident nurses, midwives and allied in Northern Ireland. that the UKCRC way of working ‘ health professionals. This is now firmly embedded in scheme will take forward the The UKCRC Secretariat has practice, and the collaborative recommendations made in been putting together the 2006 work needed to develop and the UKCRC’s 2007 report, – 2008 Progress Report over support a world class health Developing the best research the summer, which will be research environment in the UK professionals, the report of the published shortly. The report will continue long into the future. UKCRC Subcommittee for Nurses gives an update on progress in Clinical Research (Workforce) with activities detailed in the and will further strengthen 2004–2006 Progress Report Dr Liam O’Toole the UK clinical research and focuses on achievements in Chief Executive, UKCRC 1 NHS Connecting for Health patient data consultation underway HS Connecting for Health provide input on the way that the A series of workshops across Nis running a consultation NHS uses their health information England are also planned. until 10 December 2008, to by going to the online consultation Professor Sir Alex Markham, allow the public and healthcare at www.connectingforhealth.nhs. Professor of Medicine at the professionals to have their say on uk/susconsultation. Some of the University of Leeds and Chair the use of patient data for research questions it asks include: who of the Research Capability purposes and for managing and should have access to patient Programme said: “Our planning care. data? and for what additional or conversations with patients secondary uses should data be suggest that the vast majority of The sharing of patient information used other than for direct care? them are willing to participate in has the potential to improve medical research. It is essential the well-being of the population The consultation also explains that those who do not wish to through medical research, disease the benefits, legal safeguards do so have their wishes fully surveillance, screening, needs and practical steps available to respected. This public consultation assessment and preventative meet confidentiality and ethical will give patients and the public activities. The NHS Care Records obligations and will aim to gather the chance to input into this Service offers new opportunities as wide a range of views and process.” in this field, with the electronic opinions as possible. The results collection of clinical and patient of the consultation will be used The Consultation can be filled in data. to shape how information held in online or downloaded as hard copy the NHS Care Records Service is from: www.connectingforhealth. The public, patients and other used other than for the purpose of nhs.uk/susconsultation until 10 interested parties are invited to providing direct care to patients. December 2008 UKCRC Patient and Public Involvement Implementation Plan 2008-09 he UKCRC Board approved a Research web resource (www. Cynnwys Pobl, the James Lind Tthree-year Strategic Plan in peopleinresearch.org). In addition Alliance and the NIHR Network April 2008 to provide a framework to undertaking interviews and Coordinating Centre. for the UKCRC’s future patient and an analysis of web statistics, public involvement activities. video will be used to record and Copies of the UKCRC’s three- analyse a series of hands-on year Strategic Plan for Patient One of the first projects to get usability tests. Similarly, the and Public Involvement can be underway has been an evaluation purpose of the evaluation is to downloaded from the UKCRC of the process and impact of inform the development of People website at:http://www.ukcrc.org/ patient and public involvement in Research. Reports from both pdf/PPI_SPlan_Impl_08-09.pdf in UKCRC Advisory Groups. these evaluation projects will be Interviews with both patient/public available by April 2009. Please contact Philippa Yeeles at members and Chairs of UKCRC the UKCRC for more information advisory groups are being carried Implementation of the Plan is ([email protected], 0207 out in October. This will provide being overseen by the UKCRC 670 6153). information for discussion at a Board Subgroup for Patient stakeholders’ workshop which and Public Involvement. The will reflect on current progress Subgroup’s membership includes and develop recommendations for patients / public and organisations future activities. with a specific remit to support patient and public involvement Another project shortly to begin in clinical research, such as is an evaluation of the People in INVOLVE, Involving People: 2 DIPEx to feature new clinical trials module elderly, or black and minority ethnic patients. The new clinical trials section was needed for several reasons. People tend to seek out others who have been in similar situations when they are making complex decisions about their health. Recruitment of people to trials often takes place shortly after diagnosis of a disease, when their immediate concerns are focused on the diagnosis itself. This can make it hard to objectively weigh up the pros and cons of taking part. Louise Locock, who is Senior Researcher on the project, says: new sett off webb pages on resultslt are alsol publishedbli h d iin peer “We hope the resulting website A patient experiences of clinical reviewed journals. The research will help other people thinking trials is being developed by programme is based at the about taking part in a trial to make DIPEx (Database of Individual University of Oxford a more informed choice, and to Patient Experiences), a qualitative Department of Primary Care. The learn more about trial methods research programme on personal website has been redesigned and what they can expect if they experiences of health and illness. and was relaunched on 13 take part. It will also provide a The resource is being funded by October 2008 with a new valuable teaching aid for health the National Institute for Health name, Healthtalkonline (www. professionals and researchers Research and is scheduled for healthtalkonline.org). designing trials, by providing launch in Spring 2009. insights into what matters to Interviews with patients for people when they are invited to The UKCRC has supported the clinical trials study are participate in a trial and what the development of the DIPEx almost complete, and up to 45 kind of information they find most work on clinical trials through participants are expected to helpful.” representation on its advisory feature in the website section from group and encouragement of a range of trial types. Patients This new resource, based on recruitment of patients through the are invited to tell their story in rigorous qualitative research, UK clinical research networks. The their own words, and are asked complements other activities in clinical trials website section is questions such as “how were the UK clinical research networks expected to be a valuable resource you invited to take part?”, “what to boost public awareness of for many of the UKCRC Partner motivated you to take part (or say clinical research through direct organisations and stakeholders.

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