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Tj 1 0 0 1 72.00 647.76 Tm /F10 12.0 Tf (Authors) Tj /F9 12.0 Tf (:) Tj 1 0 0 1 72.00 618.32 Tm (Karen Collins RGN, BA \(Hons\), PhD) Tj 1 0 0 1 72.00 603.44 Tm (㽶Ƶ Fellow, Academic Unit of Supportive Care, Royal Hallamshire Hospital, Sheffield) Tj 1 0 0 1 72.00 573.68 Tm (Tony Stevens PhD) Tj 1 0 0 1 72.00 558.80 Tm (Consumer Liaison Lead, National Cancer 㽶Ƶ Network,Leeds) Tj 1 0 0 1 72.00 529.37 Tm (Professor Sam H Ahmedzai) Tj /F9 14.0 Tf (, ) Tj /F9 12.0 Tf (BSc MBChB FRCP) Tj 1 0 0 1 72.00 514.49 Tm (Chair of Palliative Medicine & Head of Department, Academic Unit of Supportive Care, Royal) Tj 1 0 0 1 72.00 499.61 Tm (Hallamshire Hospital, Sheffield) Tj 1 0 0 1 72.00 410.33 Tm /F10 12.0 Tf (Author for correspondence:) Tj 1 0 0 1 72.00 395.45 Tm /F9 12.0 Tf (Karen Collins) Tj 1 0 0 1 72.00 380.57 Tm (㽶Ƶ Fellow) Tj 1 0 0 1 72.00 365.69 Tm (Academic Unit of Supportive Care) Tj 1 0 0 1 72.00 350.81 Tm (K Floor) Tj 1 0 0 1 72.00 335.93 Tm (Royal Hallamshire Hospital) Tj 1 0 0 1 72.00 321.05 Tm (Sheffield S10 2JF) Tj 1 0 0 1 72.00 291.29 Tm (k.collins@sheffield.ac.uk) Tj 1 0 0 1 72.00 276.41 Tm (Tel: 0114 271 1706) Tj 1 0 0 1 72.00 107.29 Tm /F10 12.0 Tf (Abstract) Tj 1 0 0 1 72.00 77.53 Tm /F9 12.0 Tf (The North Trent Cancer 㽶Ƶ Network\221s Consumer 㽶Ƶ Panel \(NTCRN CRP\) was) Tj ET endstream endobj 17 0 obj << /Parent 1 0 R /Resources 18 0 R /MediaBox [0 0 595 842] /Type /Page /Contents 32 0 R >> endobj 35 0 obj << /Length 5528 >> stream BT 1 0 0 1 72.00 755.12 Tm /F9 12.0 Tf 0.000 0.000 0.000 rg (established in December 2001 by the Academic Unit of Supportive Care at the University of) Tj 1 0 0 1 72.00 740.24 Tm (Sheffield. In three years, the CRP has succeeded in nurturing a climate of sustainable consumer) Tj 1 0 0 1 72.00 725.36 Tm (involvement within the NTCRN and this has become embedded in the culture of the network.) Tj 1 0 0 1 72.00 710.48 Tm (Furthermore, the panel have championed a sustainable development of consumer involvement in) Tj 1 0 0 1 72.00 695.60 Tm (health and social care research by testing new ground and forging a new way of working between) Tj 1 0 0 1 72.00 680.72 Tm (health professionals and patients and carers. The CRP model has been held up as an example to) Tj 1 0 0 1 72.00 665.84 Tm (other cancer networks, with new panels being set up around the country to emulate its success.) Tj 1 0 0 1 72.00 650.96 Tm (This paper describes the Sheffield model of patient and public involvement and using the ) Tj 0.000 0.000 0.000 rg (eight) Tj 1 0 0 1 72.00 636.08 Tm (key principles of successful consumer involvement in research, identified in a recent paper by) Tj 1 0 0 1 72.00 621.20 Tm (Telford et al \(2003\), provides a useful framework for analysing the work of the) Tj 1 0 0 1 72.00 606.32 Tm (Panel.) Tj 0.000 0.000 0.000 rg ( This) Tj 0.000 0.000 0.000 rg ( ) Tj 0.000 0.000 0.000 rg (demonstrates how consumers and professionals can inform each other to work) Tj 1 0 0 1 72.00 591.44 Tm (constructively and synergistically to achieve impressive research results. The need for measurable) Tj 1 0 0 1 72.00 576.56 Tm (outcomes to assess the impact and effect of consumer involvement is finally explored.) Tj 1 0 0 1 72.00 531.92 Tm /F10 12.0 Tf (Introduction) Tj 1 0 0 1 72.00 517.05 Tm /F9 12.0 Tf (The recent consultation document issued by the Department of Health, \220Best 㽶Ƶ for Best) Tj 1 0 0 1 72.00 502.17 Tm (Health: A new National Health 㽶Ƶ Strategy\221[1], stressed that research should be patient-) Tj 1 0 0 1 72.00 487.29 Tm (centred and more responsive to the needs of patients. The document was also highly supportive of) Tj 1 0 0 1 72.00 472.41 Tm (increased public involvement in research, reinforcing a position expressed in many previous) Tj 1 0 0 1 72.00 457.53 Tm (policy documents [2-5], including the Cancer Plan [6]. In addition, many organisations have) Tj 1 0 0 1 72.00 442.65 Tm (advocated that the public should have a role in the research process \227 including the National) Tj 1 0 0 1 72.00 427.77 Tm (Cancer 㽶Ƶ Institute \(www.ncri.org.uk\), the Medical 㽶Ƶ Council \(www.mrc.ac.uk\),) Tj 1 0 0 1 72.00 412.89 Tm (the Health Technology Assessment Programme \(www.ncchta.org\) and the Cochrane) Tj 1 0 0 1 72.00 398.01 Tm (Collaboration\() Tj /F9 10.0 Tf (www.cochrane.no/consumers) Tj /F9 12.0 Tf (\) Furthermore, the 㽶Ƶ Governance Framework for) Tj 1 0 0 1 72.00 383.13 Tm (Health and Social Care [7] also made explicit reference to consumer involvement and its) Tj 1 0 0 1 72.00 368.25 Tm (continued importance in NHS R&D. Pragmatically, funding bodies like CTAAC \(Clinical Trials) Tj 1 0 0 1 72.00 353.37 Tm (Advisory and Awards Committee\) and the Population and Behavioural Sciences Committee of) Tj 1 0 0 1 72.00 338.49 Tm (Cancer 㽶Ƶ UK have explicitly stated that consumer involvement is a key requisite of a) Tj 1 0 0 1 72.00 323.61 Tm (successful application.) Tj 1 0 0 1 72.00 278.97 Tm /F10 12.0 Tf (The North Trent Cancer 㽶Ƶ Network Consumer 㽶Ƶ Panel \(NTCRN CRP\)) Tj 1 0 0 1 72.00 264.09 Tm /F9 12.0 Tf (In 2001, in response to the increasing policy initiatives to promote consumer involvement in) Tj 1 0 0 1 72.00 249.21 Tm (research, the Academic Unit of Supportive Care \(AUSC\) based at the University of Sheffield was) Tj 1 0 0 1 72.00 234.33 Tm (successful in securing \2435,000 from the North Trent Cancer 㽶Ƶ Network \(NTCRN\) to) Tj 1 0 0 1 72.00 219.45 Tm (initiate funding of an innovative model of consumer involvement in health research. This) Tj 1 0 0 1 72.00 204.57 Tm (initiative became known as the North Trent Cancer 㽶Ƶ Network Consumer 㽶Ƶ Panel) Tj 1 0 0 1 72.00 189.69 Tm (\(NTCRN CRP\) and was the first of its kind in the UK. This panel has now been in operation for) Tj 1 0 0 1 72.00 174.81 Tm (almost four years and it is made up of forty former and current cancer and palliative care patients) Tj 1 0 0 1 72.00 159.93 Tm (and carers from diverse backgrounds. These patients and carers have a variety of different types of) Tj 1 0 0 1 72.00 145.05 Tm (cancer including breast, lung, prostate, oesophageal, colorectal and myeloma, with some members) Tj 1 0 0 1 72.00 130.17 Tm (having metastatic disease. Their ages range from 35 to 75) Tj 1.000 0.000 0.000 rg ( ) Tj 0.000 0.000 0.000 rg (years and they come from all areas) Tj 1 0 0 1 72.00 115.29 Tm (within North Trent. Due to increased expressions of interest to join the panel, an associate) Tj 1 0 0 1 72.00 100.41 Tm (membership scheme has recently been included to ensure that patients and carers are able to) Tj 1 0 0 1 72.00 85.53 Tm (provide \220virtual\221 input on the panel by written correspondence or email. The main aim of the CRP) Tj ET endstream endobj 34 0 obj << /Parent 1 0 R /Resources 18 0 R /MediaBox [0 0 595 842] /Type /Page /Contents 35 0 R >> endobj 38 0 obj << /Length 4932 >> stream BT 1 0 0 1 72.00 755.12 Tm /F9 12.0 Tf 0.000 0.000 0.000 rg (is to increase, where appropriate, the engagement of consumers of cancer care in the whole) Tj 1 0 0 1 72.00 740.24 Tm (research process \227 from generation of research questions, through protocol development and) Tj 1 0 0 1 72.00 725.36 Tm (advice on issues such as ethics and patient recruitment, to actual consumer participation as) Tj 1 0 0 1 72.00 710.48 Tm (researchers, presenters and co-authors of peer-reviewed papers.) Tj 1 0 0 1 72.00 674.72 Tm (The ) Tj /F10 12.0 Tf 0.000 0.000 0.000 rg (Work of the Panel) Tj 1 0 0 1 72.00 653.84 Tm /F9 12.0 Tf (The eight key principles of successful consumer involvement in research, identified in a recent) Tj 1 0 0 1 72.00 638.96 Tm (paper by Telford et al [8], provide a useful framework for analysing the work of the Panel and) Tj 1 0 0 1 72.00 624.08 Tm (each principle will be discussed in turn.) Tj 1 0 0 1 72.00 594.32 Tm /F11 12.0 Tf (Principles 1 \227 The roles of consumers are agreed between the researchers and consumers) Tj 1 0 0 1 72.00 579.44 Tm (involved in the research.) Tj 1 0 0 1 72.00 564.56 Tm /F5 12.0 Tf 0.000 0.000 0.000 rg (There has been considerable commitment and enthusiasm towards the development of) Tj 1 0 0 1 72.00 549.68 Tm (the CRP both from panel members and from the health professionals working in the) Tj 1 0 0 1 72.00 534.80 Tm (AUSC and the NTCRN. The role of effective communication and information exchange) Tj 1 0 0 1 72.00 519.92 Tm (between health professionals, researchers and the consumer panel members has been) Tj 1 0 0 1 72.00 505.05 Tm (central to the work of the CRP. The effort by both parties to improve communication and) Tj 1 0 0 1 72.00 490.17 Tm (information exchange has helped to create an environment of trust, mutual respect and) Tj 1 0 0 1 72.00 475.29 Tm (understanding and has helped to minimise some of the challenges to consumer) Tj 1 0 0 1 72.00 460.41 Tm (involvement in health research thus allowing new ideas to emerge and different ways of) Tj 1 0 0 1 72.00 445.53 Tm (working to be implemented.) Tj 1 0 0 1 72.00 415.77 Tm /F9 12.0 Tf (Establishing the CRP gave rise to a number of challenges that initially inhibited effective) Tj 1 0 0 1 72.00 400.89 Tm (working. For example, the principle of former and current patients and carers working alongside) Tj 1 0 0 1 72.00 386.01 Tm (health professionals on research teams and committees was a new experience for both parties.) Tj 1 0 0 1 72.00 371.13 Tm (There is some evidence that, at the outset, both groups were wary of working together, with) Tj 1 0 0 1 72.00 356.25 Tm (neither sure of each other\221s roles and responsibilities or of the skills, expertise and understanding) Tj 1 0 0 1 72.00 341.37 Tm (required to successfully establish consumer involvement in the research process. There were) Tj 1 0 0 1 72.00 326.49 Tm (initial concerns by consumer members that they would not be able to contribute anything) Tj 1 0 0 1 72.00 311.61 Tm (significant to the research process and some felt unable to vocalise their views in the presence of) Tj 1 0 0 1 72.00 296.73 Tm (medical \220experts\221. Some members were also concerned that they their role was as a \220token\221) Tj 1 0 0 1 72.00 281.85 Tm (consumer. Not all health professionals welcomed consumer involvement in their work. Some felt) Tj 1 0 0 1 72.00 266.97 Tm (that consumers were \220unrepresentative\221, they had \220their own agendas\221 and did not reflect the \220true\221) Tj 1 0 0 1 72.00 252.09 Tm (voice of the patient.) Tj 1 0 0 1 72.00 222.33 Tm (However, since the early days of the CRP, mechanisms have been put in place to understand and) Tj 1 0 0 1 72.00 207.45 Tm (tackle such difficulties \(including the provision of support and training, mentoring of new) Tj 1 0 0 1 72.00 192.57 Tm (members, and role descriptions for consumers\) that have helped to address some of the challenges) Tj 1 0 0 1 72.00 177.69 Tm (of collaborative working. It has been essential to ensure members are carefully recruited onto the) Tj 1 0 0 1 72.00 162.81 Tm (panel and they understand their roles and responsibilities as representatives of the panel. Having) Tj 1 0 0 1 72.00 147.93 Tm (an understanding of medical language and terminology and the structure and role of the NTCRN) Tj 1 0 0 1 72.00 133.05 Tm (has improved the confidence of consumer members to feel able to articulate their views and) Tj 1 0 0 1 72.00 118.17 Tm (perspectives in medically dominated research or strategy meetings.) Tj 1 0 0 1 72.00 88.41 Tm /F11 12.0 Tf 0.000 0.000 0.000 rg (Principle 2 \227 㽶Ƶers budget appropriately for the costs of consumer involvement in) Tj 1 0 0 1 72.00 73.53 Tm (research.) Tj ET endstream endobj 37 0 obj << /Parent 1 0 R /Resources 18 0 R /MediaBox [0 0 595 842] /Type /Page /Contents 38 0 R >> endobj 41 0 obj << /Length 5130 >> stream BT 1 0 0 1 72.00 756.36 Tm /F9 11.0 Tf 0.000 0.000 0.000 rg (Members are paid \2437 per hour for engaging in the research process \(maximum \24350 per day\) although some) Tj 1 0 0 1 72.00 741.48 Tm (members choose to work on the panel voluntarily) Tj /F9 12.0 Tf (. The budget for the panel has been small \(2001/2) Tj 1 0 0 1 72.00 726.60 Tm (\2435,000, 2002/3 \2435,000, 2003/4 \2435,000, 2004/5, \24311,000, 2005/6 \24311,000\), and this has meant that) Tj 1 0 0 1 72.00 711.72 Tm (the time required to facilitate and develop the panel has proved challenging with the limited) Tj 1 0 0 1 72.00 696.84 Tm (resources allocated.) Tj 1 0 0 1 72.00 667.08 Tm /F11 12.0 Tf 0.000 0.000 0.000 rg (Principle 3 \227 㽶Ƶers respect the differing skills, knowledge and experience of consumers.) Tj 1 0 0 1 72.00 652.20 Tm /F5 12.0 Tf 0.000 0.000 0.000 rg (Health professionals have recognised that the language used within committee meetings) Tj 1 0 0 1 72.00 637.32 Tm (and research project meetings may be a potential barrier to effective communication) Tj 1 0 0 1 72.00 622.44 Tm (between the professional and the consumer and this has been overcome by the sensitive) Tj 1 0 0 1 72.00 607.56 Tm (use of translating medical terms into non specialist language and by explaining specific) Tj 1 0 0 1 72.00 592.68 Tm (procedures or technologies. The AUSC have worked to ensure that the health) Tj 1 0 0 1 72.00 577.80 Tm (professionals clarify, at the outset, the role of consumer members on research projects,) Tj 1 0 0 1 72.00 562.92 Tm (acknowledging that each consumer representative will bring a unique perspective and) Tj 1 0 0 1 72.00 548.04 Tm (make explicit the roles that health professionals themselves have in guiding the) Tj 1 0 0 1 72.00 533.16 Tm (consumer through the process. Professor Hancock \(Yorkshire Cancer 㽶Ƶ Director) Tj 1 0 0 1 72.00 518.28 Tm (of Cancer 㽶Ƶ\) sums up his views of this aspect of the CRP\221s work:) Tj 1 0 0 1 72.00 503.40 Tm /F7 12.0 Tf (\224The CRP has achieved most by making clinicians aware of the important role of) Tj 1 0 0 1 72.00 488.52 Tm (consumers on local, network and national committees. It has also helped to dispel the) Tj 1 0 0 1 72.00 473.65 Tm (suspicion that research professionals have regarding what they see as \220uninformed) Tj 1 0 0 1 72.00 458.77 Tm (interference\221 and personal agendas.\225) Tj 1 0 0 1 72.00 429.01 Tm /F11 12.0 Tf 0.000 0.000 0.000 rg (Principle 4 \227 Consumers are offered training and personal support to enable them to be involved) Tj 1 0 0 1 72.00 414.13 Tm (in research.) Tj 1 0 0 1 72.00 399.25 Tm /F9 12.0 Tf 0.000 0.000 0.000 rg (Training is one of the key elements in successful consumer involvement and from the inception of) Tj 1 0 0 1 72.00 384.37 Tm (the panel in 2001, all new members joining the CRP attend a two-day induction research training) Tj 1 0 0 1 72.00 369.49 Tm (programme. ) Tj 0.000 0.000 0.000 rg (The aims of the training programme are to provide) Tj 0.000 0.000 0.000 rg (:) Tj 1 0 0 1 100.80 339.73 Tm 0.000 0.000 0.000 rg (\217 an introduction and background to consumer involvement in health research) Tj 1 0 0 1 100.80 324.85 Tm 0.000 0.000 0.000 rg (\217 an overview of the structure and role of the NTCRN and supportive and cancer research) Tj 1 0 0 1 108.00 309.97 Tm (nationally) Tj 1 0 0 1 100.80 295.09 Tm 0.000 0.000 0.000 rg (\217 an overview of the role ) Tj 0.000 0.000 0.000 rg (of the) Tj 0.000 0.000 0.000 rg ( CRP) Tj 1 0 0 1 100.80 280.21 Tm 0.000 0.000 0.000 rg (\217 a basic grounding in research methodology \(quantitative and qualitative\) and terminology) Tj 1 0 0 1 100.80 265.33 Tm (\217 examples of funded research studies ) Tj 0.000 0.000 0.000 rg (where consumers have been actively involved) Tj 1 0 0 1 72.00 235.57 Tm 0.000 0.000 0.000 rg (Both the CRP training and the specifically produced supporting literature \() Tj /F11 12.0 Tf (CRP Introduction) Tj 1 0 0 1 72.00 220.69 Tm (Handbook) Tj /F9 12.0 Tf ( and ) Tj /F11 12.0 Tf (Overview of Cancer 㽶Ƶ Handbook) Tj /F9 12.0 Tf (\) have proven very effective and requests) Tj 1 0 0 1 72.00 205.81 Tm (for these documents have been received from many health care professionals working across the) Tj 1 0 0 1 72.00 190.93 Tm (UK.) Tj 1 0 0 1 72.00 161.17 Tm /F11 12.0 Tf 0.000 0.000 0.000 rg (Principle 5 \227 㽶Ƶers ensure that they have the necessary skills to involve consumers in the) Tj 1 0 0 1 72.00 146.29 Tm (research process.) Tj 1 0 0 1 72.00 131.41 Tm /F9 12.0 Tf 0.000 0.000 0.000 rg (Members of the CRP work alongside cancer and palliative care research teams, health) Tj 1 0 0 1 72.00 116.53 Tm (professionals and professional bodies to provide a user perspective at any or all stages of research) Tj 1 0 0 1 72.00 101.65 Tm (projects \(including local and national clinical trials\), where this is appropriate. This has) Tj 1 0 0 1 72.00 86.77 Tm (necessitated a significant cultural change among health professionals:) Tj ET endstream endobj 40 0 obj << /Parent 1 0 R /Resources 18 0 R /MediaBox [0 0 595 842] /Type /Page /Contents 41 0 R >> endobj 44 0 obj << /Length 5279 >> stream BT 1 0 0 1 72.00 755.12 Tm /F11 12.0 Tf 0.000 0.000 0.000 rg ( \224Members of the CRP contribute to every stage of research in our department. We no longer as) Tj 1 0 0 1 72.00 740.24 Tm (clinicians have to imagine what our patients or their family would think about our studies and we) Tj 1 0 0 1 72.00 725.36 Tm (can inform research ethics committees about the views of real consumers before we start. It) Tj 1 0 0 1 72.00 710.48 Tm (works because they are with us at every step instead of passing judgement when plans for) Tj 1 0 0 1 72.00 695.60 Tm (research are already worked up and changing them would be very wasteful of resources.\225) Tj /F9 12.0 Tf ( \(Dr) Tj 1 0 0 1 72.00 680.72 Tm (Noble Consultant Macmillan Physician and Senior Lecturer in Palliative Care, The University of) Tj 1 0 0 1 72.00 665.84 Tm (Sheffield\)) Tj 1 0 0 1 72.00 636.08 Tm 0.000 0.000 0.000 rg (The involvement and integration of consumers into the NTCRN culture is an excellent) Tj 1 0 0 1 72.00 621.20 Tm (demonstration of how a relatively simple model of involvement can result in effective) Tj 1 0 0 1 72.00 606.32 Tm (communication and information exchange between health professionals and CRP members.) Tj 1 0 0 1 72.00 576.56 Tm 0.000 0.000 0.000 rg (The CRP has become a sustainable part of the NTCRNs core work. Indeed the NTCRN in their) Tj 1 0 0 1 72.00 561.68 Tm (Annual Report [9] to the National Cancer 㽶Ƶ Network stated that \220) Tj /F11 12.0 Tf (the involvement of) Tj 1 0 0 1 72.00 546.80 Tm (consumers in North Trent has been the biggest initiative in the last 12 months, building on the) Tj 1 0 0 1 72.00 531.92 Tm (solid foundations laid over the last two years\214Consumers are now an integral part of the) Tj 1 0 0 1 72.00 517.05 Tm (network. We consider ourselves to be the leaders in consumer involvement) Tj /F9 12.0 Tf (.\221 Professor Coleman,) Tj 1 0 0 1 72.00 502.17 Tm (Clinical Lead for 㽶Ƶ, North Trent Cancer 㽶Ƶ Network has argued that:) Tj 1 0 0 1 72.00 487.29 Tm /F11 12.0 Tf (\224The CRP has provided an important additional dimension\240to the vision of our network in) Tj 1 0 0 1 72.00 472.41 Tm (ensuring that the opportunity to participate in clinical trials becomes a standard of care across) Tj 1 0 0 1 72.00 457.53 Tm (the range of tumour types. The patient perspective and advice from CRP members on) Tj 1 0 0 1 72.00 442.65 Tm (communicating the aims of individual trials through clearly written protocols and appropriately) Tj 1 0 0 1 72.00 427.77 Tm (written patient information have been invaluable) Tj /F9 12.0 Tf (.\225 [9]) Tj 1 0 0 1 72.00 398.01 Tm /F11 12.0 Tf 0.000 0.000 0.000 rg (Principle 6 \227 Consumers are involved in decisions about how participants are both recruited and) Tj 1 0 0 1 72.00 383.13 Tm (kept informed about the progress of the research.) Tj 1 0 0 1 72.00 368.25 Tm /F9 12.0 Tf 0.000 0.000 0.000 rg (Two CRP members are currently involved in a Cancer 㽶Ƶ UK study \220Patient and) Tj 1 0 0 1 72.00 353.37 Tm (professional factors influencing choice of surgery in the management of breast cancer.\221 These) Tj 1 0 0 1 72.00 338.49 Tm (members have worked alongside breast surgeons and researchers and have been involved in all) Tj 1 0 0 1 72.00 323.61 Tm (stages of the study, and recommended several modifications to the way that patients were) Tj 1 0 0 1 72.00 308.73 Tm (recruited into the study. Members have also collaborated with the research team to design patient) Tj 1 0 0 1 72.00 293.85 Tm (information sheets, interview schedules and questionnaires. They have recently been assisting the) Tj 1 0 0 1 72.00 278.97 Tm (team in analysing and interpreting qualitative data gained during the study.) Tj 1 0 0 1 72.00 249.21 Tm /F11 12.0 Tf 0.000 0.000 0.000 rg (Principle 7 \227 Consumer involvement is described in research reports.) Tj 1 0 0 1 72.00 234.33 Tm /F9 12.0 Tf 0.000 0.000 0.000 rg (Consumers have presented papers at local, regional and national conferences. Consumers are) Tj 1 0 0 1 72.00 219.45 Tm (assisting in analysis and dissemination and have contributed to publications [10,11]) Tj 1 0 0 1 72.00 189.69 Tm /F11 12.0 Tf 0.000 0.000 0.000 rg (Principle 8 \227 㽶Ƶ findings are available to consumers, in formats and a language they can) Tj 1 0 0 1 72.00 174.81 Tm (easily understand.) Tj 1 0 0 1 72.00 159.93 Tm /F9 12.0 Tf 0.000 0.000 0.000 rg (CRP members have been involved in the editing and review of reports prior to publication. They) Tj 1 0 0 1 72.00 145.05 Tm (have also been co-authors of research publications and presentations. Given the expansion of the) Tj 1 0 0 1 72.00 130.17 Tm (panels activities and the need to disseminate information the CRP have designed their own) Tj 1 0 0 1 72.00 115.29 Tm (website \(ntcrp.org.uk\) and have recently launched their first quarterly newsletter. The aim of this) Tj 1 0 0 1 72.00 100.41 Tm (newsletter to promote communication and effective information exchange between health) Tj 1 0 0 1 72.00 85.53 Tm (professionals, researchers and consumers) Tj ET endstream endobj 43 0 obj << /Parent 1 0 R /Resources 18 0 R /MediaBox [0 0 595 842] /Type /Page /Contents 44 0 R >> endobj 47 0 obj << /Length 4603 >> stream BT 1 0 0 1 72.00 755.12 Tm /F9 12.0 Tf 0.000 0.000 0.000 rg (As well as individual members being involved in a number of research projects \(see below\),) Tj 1 0 0 1 72.00 740.24 Tm (members are also asked to attend the CRP \220business meeting\221 four times a year. This meeting) Tj 1 0 0 1 72.00 725.36 Tm (provides a forum for members to meet and share the work they are undertaking on behalf of the) Tj 1 0 0 1 72.00 710.48 Tm (panel, to discuss particular successes or difficulties relating to being involved as consumers on) Tj 1 0 0 1 72.00 695.60 Tm (research projects, to generate new research ideas, discuss further training needs and it also acts as) Tj 1 0 0 1 72.00 680.72 Tm (a forum for the research fellow from the AUSC to disseminate information about new research) Tj 1 0 0 1 72.00 665.84 Tm (projects or activities where CRP input is being sought. The CRP uses three main tools of) Tj 1 0 0 1 72.00 650.96 Tm (communication to further its purpose \227) Tj 1 0 0 1 96.00 621.20 Tm (1. Consumer-chaired meetings to discuss business, research proposals and to plan an annual) Tj 1 0 0 1 108.00 606.32 Tm (national conference) Tj 1 0 0 1 96.00 591.44 Tm (2. A consumer-designed website and newsletter which are supported by the academic unit) Tj 1 0 0 1 96.00 576.56 Tm (3. Many local, regional and national representations and talks involving consumers, health) Tj 1 0 0 1 108.00 561.68 Tm (professionals and academics.) Tj 1 0 0 1 72.00 531.92 Tm (One of the panel members summarises what the panel means to its members:) Tj 1 0 0 1 72.00 502.17 Tm /F11 12.0 Tf (\224The formation of the Consumer 㽶Ƶ Panel has enabled patients/carers to become more) Tj 1 0 0 1 72.00 487.29 Tm (involved in different areas of cancer care and research by giving the group and individuals the) Tj 1 0 0 1 72.00 472.41 Tm (confidence, information and opportunities to be able to contribute at all levels. There are) Tj 1 0 0 1 72.00 457.53 Tm (enormous benefits of being part of a panel rather than being an individual representative. The) Tj 1 0 0 1 72.00 442.65 Tm (training and support are invaluable creating a very professional team who have the ability to) Tj 1 0 0 1 72.00 427.77 Tm (share their skills and experiences in areas they did not previously have access to. Consumers have) Tj 1 0 0 1 72.00 412.89 Tm (responded very positively and enthusiastically to invitations to join project teams. We have been) Tj 1 0 0 1 72.00 398.01 Tm (made to feel very welcome and a valued member of any team. It is a wonderful opportunity to give) Tj 1 0 0 1 72.00 383.13 Tm (something back and hopefully make a difference\221\221 ) Tj /F9 12.0 Tf (\(CRP member\).) Tj 1 0 0 1 72.00 338.49 Tm /F10 12.0 Tf (CRP involvement on research studies) Tj 1 0 0 1 72.00 308.73 Tm /F9 12.0 Tf 0.000 0.000 0.000 rg (Within the North Trent Cancer 㽶Ƶ Network, CRP members have been involved in many) Tj 1 0 0 1 72.00 293.85 Tm (projects, and at different stages. Examples are provided below.) Tj 1 0 0 1 72.00 264.09 Tm 0.000 0.000 0.000 rg (1. Identifying and prioritising research topics) Tj 1 0 0 1 72.00 234.33 Tm (Two CRP members represent the CRP at the Supportive and Primary Care Oncology 㽶Ƶ) Tj 1 0 0 1 72.00 219.45 Tm (Group \(SPORG\) \(which is funded by the NTCRN\). SPORG is a funding forum for the exchange) Tj 1 0 0 1 72.00 204.57 Tm (of views about research projects on supportive and primary care research. The projects focus on) Tj 1 0 0 1 72.00 189.69 Tm (all aspects of communication process between patients and health professionals and determination) Tj 1 0 0 1 72.00 174.81 Tm (of the extent that this process influences treatment decisions, entry into clinical trials, clinical) Tj 1 0 0 1 72.00 159.93 Tm (outcomes and patient enablement. For example, members of the CRP identified the need for a) Tj 1 0 0 1 72.00 145.05 Tm (study that explored ways of improving clinical consultations in order to help patients to cope and) Tj 1 0 0 1 72.00 130.17 Tm (understand their illness. This idea was put to the Supportive and Primary Care Oncology 㽶Ƶ) Tj 1 0 0 1 72.00 115.29 Tm (Group \(which is funded by the NTCRN\) by two CRP members and this was taken up by the) Tj 1 0 0 1 72.00 100.41 Tm (group. Thereafter, CRP members worked alongside a palliative care consultant to develop the) Tj 1 0 0 1 72.00 85.53 Tm (proposal. \220Improving clinical consultations: a survey of clinics in the North Trent Cancer) Tj ET endstream endobj 46 0 obj << /Parent 1 0 R /Resources 18 0 R /MediaBox [0 0 595 842] /Type /Page /Contents 47 0 R >> endobj 50 0 obj << /Length 4353 >> stream BT 1 0 0 1 72.00 755.12 Tm /F9 12.0 Tf 0.000 0.000 0.000 rg (㽶Ƶ Network.\221 This was subsequently funded by SPORG in 2003 and is currently being) Tj 1 0 0 1 72.00 740.24 Tm (written up. Two CRP members have been actively involved in this study as members of the) Tj 1 0 0 1 72.00 725.36 Tm (steering group.) Tj 1 0 0 1 72.00 695.60 Tm (2. Commissioning research projects) Tj 1 0 0 1 72.00 665.84 Tm (Two CRP members represent the CRP at a monthly NTCRN Clinical Trials Executive. This is a) Tj 1 0 0 1 72.00 650.96 Tm (forum for the presentation of new trials and research studies which are presented by principle) Tj 1 0 0 1 72.00 636.08 Tm (investigators. The CRP member role is to work alongside health professionals and academic) Tj 1 0 0 1 72.00 621.20 Tm (researchers to peer review and discuss research proposals in light of their understanding from the) Tj 1 0 0 1 72.00 606.32 Tm (perspective of a patient or carer, before deciding as a group whether approval is or is not given for) Tj 1 0 0 1 72.00 591.44 Tm (the trial to go forward for ethics and research and development approval) Tj 1 0 0 1 72.00 561.68 Tm (3. Designing and managing projects) Tj 1 0 0 1 72.00 531.92 Tm (CRP members are involved in a project \220Patient-led Integrated Supportive Care Evaluation Study\221) Tj 1 0 0 1 72.00 517.05 Tm (funded from the Department of Health that originated in response to Guidance on Supportive Care) Tj 1 0 0 1 72.00 502.17 Tm (Services recently published in the National Institute for Clinical Excellence. Its purpose is to map) Tj 1 0 0 1 72.00 487.29 Tm (the provision of supportive care services in Sheffield and assess the extent to which they fulfil the) Tj 1 0 0 1 72.00 472.41 Tm (requirements of the NICE guidance. The project steering group comprises of consumers,) Tj 1 0 0 1 72.00 457.53 Tm (clinicians/researchers. Consumer members have been involved in every stages of the research) Tj 1 0 0 1 72.00 442.65 Tm (process including data collection and analysis and they are currently involved in writing up the) Tj 1 0 0 1 72.00 427.77 Tm (study.) Tj 1 0 0 1 72.00 412.89 Tm (CRP members are also working together on developing a \220user led\221 project, with a specific) Tj 1 0 0 1 72.00 398.01 Tm (research question \227 the costs of cancer treatments borne by patients.) Tj 1 0 0 1 72.00 368.25 Tm /F11 12.0 Tf (\224We are currently embarking on the ultimate step which would be for consumer research ideas to) Tj 1 0 0 1 72.00 353.37 Tm (be fully worked up into research projects and clinical trials. We would hope that in the near) Tj 1 0 0 1 72.00 338.49 Tm (future, some of the research ideas which have come from our members will be fully investigated) Tj 1 0 0 1 72.00 323.61 Tm (and result in positive help and support for the dedicated staff and deserving patients in the health) Tj 1 0 0 1 72.00 308.73 Tm (service." .\225 ) Tj /F9 12.0 Tf (\(David Ardron, CRP Vice Chair\)) Tj 1 0 0 1 72.00 278.97 Tm (As noted above, consumers have also been involved in analysing and interpreting data, and) Tj 1 0 0 1 72.00 264.09 Tm (contributing to articles that have been subsequently published in peer-reviewed journals.) Tj 1 0 0 1 72.00 234.33 Tm (4. Disseminating and implementing research findings) Tj 1 0 0 1 72.00 189.69 Tm (Consumer members are also involved in the organisation and planning of a unique national annual) Tj 1 0 0 1 72.00 174.81 Tm (consumer conference held in Sheffield on all aspects of cancer and supportive and palliative care.) Tj 1 0 0 1 72.00 159.93 Tm (This event is always well attended \(in excess of 200 delegates\). It is unique in that it brings) Tj 1 0 0 1 72.00 145.05 Tm (together health professionals, researchers and members of the public. The aim of the conference is) Tj 1 0 0 1 72.00 130.17 Tm (to increase the profile of consumer involvement in health and social care in research nationally) Tj 1 0 0 1 72.00 115.29 Tm (and to enhance communication and information exchange between health professionals and the) Tj 1 0 0 1 72.00 100.41 Tm (public to ensure that people who use services are involved in and can influence the development) Tj 1 0 0 1 72.00 85.53 Tm (of cancer services, practices and research in North Trent.) Tj ET endstream endobj 49 0 obj << /Parent 1 0 R /Resources 18 0 R /MediaBox [0 0 595 842] /Type /Page /Contents 50 0 R >> endobj 53 0 obj << /Length 5721 >> stream BT 1 0 0 1 72.00 755.12 Tm /F11 12.0 Tf 0.000 0.000 0.000 rg (\224The 㽶Ƶ Open-Days held annually in Sheffield provide an almost unique opportunity in this) Tj 1 0 0 1 72.00 740.24 Tm (country where users and professionals demonstrate an openness and transparency that is both) Tj 1 0 0 1 72.00 725.36 Tm (refreshing and exciting.\225) Tj /F9 12.0 Tf ( \(Derek Stewart, former Chair of NCRI Consumer Liaison Group\) ) Tj 1 0 0 1 72.00 695.60 Tm (The themes that arise from the sessions between health professionals/researchers and the public) Tj 1 0 0 1 72.00 680.72 Tm (are thereafter used to inform the research agenda within the Cancer Network [12]. For example,) Tj 1 0 0 1 72.00 665.84 Tm (as a result of a call from consumers at this conference for patients\221 consultations to be audio) Tj 1 0 0 1 72.00 650.96 Tm (taped, three consultants working in North Trent took action at once and were among the first) Tj 1 0 0 1 72.00 636.08 Tm (consultants to meet the demand for recordings of their consultations. The availability of taped) Tj 1 0 0 1 72.00 621.20 Tm (recordings of consultations has since been added to the guide \(Your Guide to Cancer Services in) Tj 1 0 0 1 72.00 606.32 Tm (Sheffield: information for patients, their families, carers and friends, 2nd edition, June 2003\)) Tj 1 0 0 1 72.00 591.44 Tm (given to all patients receiving cancer treatment within North Trent.) Tj 1 0 0 1 72.00 555.68 Tm /F10 12.0 Tf (Links with other organisations) Tj 1 0 0 1 72.00 534.80 Tm /F9 12.0 Tf (Panel members are frequently asked to provide their views and expertise as panel members on) Tj 1 0 0 1 72.00 519.92 Tm (their experiences of being involved in health research at local and national research forums and) Tj 1 0 0 1 72.00 505.05 Tm (conferences. In order to take consumer involvement in cancer and supportive care research) Tj 1 0 0 1 72.00 490.17 Tm (forward and contribute at a broader level, the CRP has established and strengthened links with a) Tj 1 0 0 1 72.00 475.29 Tm (number of national and regional cancer organisations and groups across the UK. CRP members) Tj 1 0 0 1 72.00 460.41 Tm (have been invited to join a number of influential groups as consumer members \(such as the) Tj 1 0 0 1 72.00 445.53 Tm (National Cancer 㽶Ƶ Institute Breast Cancer Clinical Studies Group, the National Cancer) Tj 1 0 0 1 72.00 430.65 Tm (㽶Ƶ Institute Lung Cancer Clinical Studies Group,) Tj /F10 12.0 Tf 0.000 0.000 0.000 rg ( the National ) Tj /F9 12.0 Tf 0.000 0.000 0.000 rg (Cancer 㽶Ƶ Institute) Tj 1 0 0 1 72.00 415.77 Tm 0.000 0.000 0.000 rg (Palliative Care Studies Development Group and ) Tj 0.000 0.000 0.000 rg (the National Cancer 㽶Ƶ Institute ) Tj /F10 12.0 Tf 0.000 0.000 0.000 rg (Strategic) Tj 1 0 0 1 72.00 400.89 Tm (Planning Group on PET Scanning, ) Tj /F9 12.0 Tf 1.000 0.000 0.000 rg ( ) Tj 0.000 0.000 0.000 rg (NCRN Macmillan Steering Group and the National) Tj 1 0 0 1 72.00 386.01 Tm (Translational Cancer 㽶Ƶ Co-ordinating Centre \(NTRAC\).) Tj 0.000 0.000 0.000 rg ( The research fellow \(Dr Karen) Tj 1 0 0 1 72.00 371.13 Tm (Collins\) who voluntarily \(facilitator post non funded\) provides support, guidance and training to) Tj 1 0 0 1 72.00 356.25 Tm (panel members ) Tj 0.000 0.000 0.000 rg (is also regularly contacted by health professionals and academic researchers) Tj 1 0 0 1 72.00 341.37 Tm (working across the UK and asked to present to health professionals on the process of setting up) Tj 1 0 0 1 72.00 326.49 Tm (consumer research panels and to explain what training is required in order that health) Tj 1 0 0 1 72.00 311.61 Tm (professionals and patients/carers can meaningfully engage in constructive dialogue in order) Tj 1 0 0 1 72.00 296.73 Tm (enhance consumer involvement in health research \(e.g. Sheffield Health and Social 㽶Ƶ) Tj 1 0 0 1 72.00 281.85 Tm (Consortium, Trent 㽶Ƶ Development Support Unit\). Further more, national pharmaceutical) Tj 1 0 0 1 72.00 266.97 Tm (companies are aware of the profile of the panel and have contacted the panel facilitator to request) Tj 1 0 0 1 72.00 252.09 Tm (advice on involving consumers in the pharmaceutical industry to initiate meetings between the) Tj 1 0 0 1 72.00 237.21 Tm (panel and these companies to set up exploratory meetings on potential collaborative working and) Tj 1 0 0 1 72.00 222.33 Tm (incorporate the panel into their work. As a result of Dr Collins\221 work on the panel, in 2004 she) Tj 1 0 0 1 72.00 207.45 Tm (was appointed to INVOLVE \(an advisory body to the Department of Health to promote consumer) Tj 1 0 0 1 72.00 192.57 Tm (involvement in health , social care and public health research\) and also encouraged panel) Tj 1 0 0 1 72.00 177.69 Tm (members to participate in the conference held by INVOLVE in order to maximise good working) Tj 1 0 0 1 72.00 162.81 Tm (practice within the panel. ) Tj 1 0 0 1 72.00 133.05 Tm /F6 12.0 Tf (What have been the measurable outcomes?) Tj 1 0 0 1 72.00 118.17 Tm /F9 12.0 Tf (It is difficult to assess objectively the impact of the CRP on the nature, quality and extent of) Tj 1 0 0 1 72.00 103.29 Tm (cancer research within the NTCRN. Many commentators have noted that there has to date been no) Tj 1 0 0 1 72.00 88.41 Tm (systematic evaluation of the benefits or otherwise of consumer involvement in research, and this is) Tj 1 0 0 1 72.00 73.53 Tm (urgently required. Key questions, which as yet remain unanswered, include defining the policy) Tj ET endstream endobj 52 0 obj << /Parent 1 0 R /Resources 18 0 R /MediaBox [0 0 595 842] /Type /Page /Contents 53 0 R >> endobj 56 0 obj << /Length 5401 >> stream BT 1 0 0 1 72.00 755.12 Tm /F9 12.0 Tf 0.000 0.000 0.000 rg (drivers for consumer involvement in research, ascertaining the relative significance of each and) Tj 1 0 0 1 72.00 740.24 Tm (identifying outcome measures to assess the impact and effect of participation.) Tj 1 0 0 1 72.00 710.48 Tm (The ethical argument that consumers should be involved in the research processes \227 as such) Tj 1 0 0 1 72.00 695.60 Tm (studies may have an impact upon their own and others health, has often been stated. However,) Tj 1 0 0 1 72.00 680.72 Tm (such an argument implies that it is already known that all consumer involvement is a good thing \227) Tj 1 0 0 1 72.00 665.84 Tm (whereas there is some evidence for example, to show that participation can be disempowering for) Tj 1 0 0 1 72.00 650.96 Tm (consumers, and that some consumers have overly high expectations about the effects of their input) Tj 1 0 0 1 72.00 636.08 Tm (and about outcomes from single studies and are dissatisfied with the process [11].) Tj 1 0 0 1 72.00 606.32 Tm (There is a temptation to say that the gathering evidence based upon specific criteria is neither) Tj 1 0 0 1 72.00 591.44 Tm (necessary nor sufficient. If there is only concern about process factors \(such as openness,) Tj 1 0 0 1 72.00 576.56 Tm (accountability, numbers of consumers involved\), then any subsequent effects on research) Tj 1 0 0 1 72.00 561.68 Tm (outcomes are irrelevant. Similarly, if it is accepted that the drivers are essentially political in) Tj 1 0 0 1 72.00 546.80 Tm (nature, then the requirements for evidence are similarly reduced. Finally, in regard to ethics, some) Tj 1 0 0 1 72.00 531.92 Tm (commentators have suggested that it is not within the remit of a scientific enquiry to investigate) Tj 1 0 0 1 72.00 517.05 Tm (ethically driven policies such as the involvement of consumers in research.) Tj 1 0 0 1 72.00 487.29 Tm /F5 12.0 Tf (Despite these challenges, the CRP is now attempting to ) Tj /F9 12.0 Tf (assess and evaluate the changes) Tj 1 0 0 1 72.00 472.41 Tm (resulting in cancer and palliative research studies and advisory group meetings occurring as a) Tj 1 0 0 1 72.00 457.53 Tm (direct result of consumer involvement and to map, using specifically designed evaluation forms) Tj 1 0 0 1 72.00 442.65 Tm (the perceived role, expectations and activities of the consumer members against those of the) Tj 1 0 0 1 72.00 427.77 Tm (health professionals/researchers. This work will provide essential information on the value of) Tj 1 0 0 1 72.00 412.89 Tm (incorporating consumers in various stages of the research process. The process serves as a useful) Tj 1 0 0 1 72.00 398.01 Tm (tool to identify any difficulties as they arise from health professionals and consumers working) Tj 1 0 0 1 72.00 383.13 Tm (together. Furthermore, s) Tj /F5 12.0 Tf (ince, these evaluation and feedback forms were introduced, a) Tj 1 0 0 1 72.00 368.25 Tm (number of organisations have requested permission to adapt the evaluation tool for their) Tj 1 0 0 1 72.00 353.37 Tm (own use \(e.g. The Sheffield Health and Social 㽶Ƶ Consortium \(a collaboration) Tj 1 0 0 1 72.00 338.49 Tm (between Sheffield\221s two Universities, four Primary Care Trusts, Social Services and Trent) Tj 1 0 0 1 72.00 323.61 Tm (Focus which exist to ensure scientific research is well supported within social services) Tj 1 0 0 1 72.00 308.73 Tm (and the NHS outside hospitals\). Thus, the CRP has been effective in sharing and) Tj 1 0 0 1 72.00 293.85 Tm (disseminating information about the process of consumer involvement in health research) Tj 1 0 0 1 72.00 278.97 Tm (and such ) Tj /F9 12.0 Tf (sharing of ideas across organisations has resulted in the NTCRN CRP becoming) Tj 1 0 0 1 72.00 264.09 Tm (recognised as a panel promoting good practice in consumer involvement.) Tj 1 0 0 1 72.00 221.93 Tm (However, CRP members are now seen as essential representatives of local research teams and on) Tj 1 0 0 1 72.00 207.05 Tm (local and national strategic groups and committees, with a standing equivalent to the health) Tj 1 0 0 1 72.00 192.17 Tm (professionals on those bodies. The CRP model is being replicated in other cancer networks across) Tj 1 0 0 1 72.00 177.29 Tm (the UK; and is viewed as a model of good practice by national consumer advisory group) Tj 1 0 0 1 72.00 162.41 Tm (\(INVOLVE\). NTCRN CRP training packs are being used across the UK, members of the CRP) Tj 1 0 0 1 72.00 147.53 Tm (have been invited to conduct presentations at local and national events, and there have been five) Tj 1 0 0 1 72.00 132.65 Tm (successful annual CRP national conferences. Development of the CRP website, newsletters,) Tj 1 0 0 1 72.00 117.77 Tm (logos, initiation of user led projects, dissemination of CRP guides and annual reports to all cancer) Tj 1 0 0 1 72.00 102.89 Tm (networks across the UK to assist with development of consumer involvement initiatives,) Tj 1 0 0 1 72.00 88.01 Tm (collaboration with national bodies including NCRI, NTRAC, INVOLVE\). The AUSC and CRP) Tj 1 0 0 1 72.00 73.13 Tm (members have remained committed and enthusiastic to the developments of the panel and) Tj ET endstream endobj 55 0 obj << /Parent 1 0 R /Resources 18 0 R /MediaBox [0 0 595 842] /Type /Page /Contents 56 0 R >> endobj 59 0 obj << /Length 3751 >> stream BT 1 0 0 1 72.00 755.12 Tm /F9 12.0 Tf 0.000 0.000 0.000 rg (frequently work voluntarily to promote the concept of consumer involvement in cancer and) Tj 1 0 0 1 72.00 740.24 Tm (palliative care research across the UK. The panel are now very keen to move forward \220user led\221) Tj 1 0 0 1 72.00 725.36 Tm (research projects in cancer and palliative care and additional resources are required to support the) Tj 1 0 0 1 72.00 710.48 Tm (development of such initiatives.) Tj 1 0 0 1 72.00 680.72 Tm /F10 12.0 Tf (Conclusions) Tj 1 0 0 1 72.00 665.84 Tm /F9 12.0 Tf (The NTCRN CRP is an excellent demonstration of how patients/carers and health professionals) Tj 1 0 0 1 72.00 650.96 Tm (can work together to increase effective consumer involvement in health and social care research.) Tj 1 0 0 1 72.00 636.08 Tm (It has increased the dialogue and communication between health professionals and patients and) Tj 1 0 0 1 72.00 621.20 Tm (carers, and engendered significant cultural and organisational change. The CRP has succeeded in) Tj 1 0 0 1 72.00 606.32 Tm (providing a forum for cancer and palliative care users and carers who are wishing to become) Tj 1 0 0 1 72.00 591.44 Tm (actively involved in cancer and palliative research. It has given a real \220voice\221 to users of the health) Tj 1 0 0 1 72.00 576.56 Tm (service, enabling their opinions to be fully considered and fed into the research process. It has also) Tj 1 0 0 1 72.00 561.68 Tm (provided a unique resource for health professionals and researchers who wish to involve) Tj 1 0 0 1 72.00 546.80 Tm (consumers in any or all stages of the research process. It has also empowered patients and carers) Tj 1 0 0 1 72.00 531.92 Tm (to take on new responsibilities outside of North Trent and into national organisations, with the) Tj 1 0 0 1 72.00 517.05 Tm (result that the NTCRN CRP is now at the forefront of consumer involvement developments in) Tj 1 0 0 1 72.00 502.17 Tm (cancer and palliative care research nationally.) Tj 1 0 0 1 72.00 472.41 Tm /F10 12.0 Tf (Practice Implications) Tj 1 0 0 1 72.00 457.53 Tm /F9 12.0 Tf (The CRP model of consumer involvement in health research has become a flagship for the) Tj 1 0 0 1 72.00 442.65 Tm (development and implementation of other panels in other Cancer Networks across the UK. This) Tj 1 0 0 1 72.00 427.77 Tm (initiative is currently being developed by the National Cancer 㽶Ƶ Network and Macmillan) Tj 1 0 0 1 72.00 412.89 Tm (Cancer Relief, and aims to fully integrate consumers and the cancer research community, and to) Tj 1 0 0 1 72.00 398.01 Tm (develop CRPs as a national resource using information and communication technology.) Tj 1 0 0 1 72.00 353.37 Tm /F10 12.0 Tf (Word count: 4,318) Tj 1 0 0 1 72.00 308.73 Tm /F9 12.0 Tf (Acknowledgements) Tj 1 0 0 1 72.00 278.97 Tm (The authors would like to thank all members of the NTCRN CRP who have generously given) Tj 1 0 0 1 72.00 264.09 Tm (their time, enthusiasm and commitment to developing the panel and also for their comments on) Tj 1 0 0 1 72.00 249.21 Tm (this paper. Our thanks also to the clinicians who provided quotations to use within this paper and) Tj 1 0 0 1 72.00 234.33 Tm (to Sue Button, the CRP project secretary for her input in the final formatting of this paper. Finally) Tj 1 0 0 1 72.00 219.45 Tm (to the North Trent Cancer 㽶Ƶ Network who have funded and supported the panel over the) Tj 1 0 0 1 72.00 204.57 Tm (past four years) Tj 1 0 0 1 72.00 159.93 Tm (I confirm that the patient/person\(s\) have read this manuscript and given their permission for it to) Tj 1 0 0 1 72.00 145.05 Tm (be published in PEC) Tj ET endstream endobj 58 0 obj << /Parent 1 0 R /Resources 18 0 R /MediaBox [0 0 595 842] /Type /Page /Contents 59 0 R >> endobj 62 0 obj << /Length 2632 >> stream BT 1 0 0 1 72.00 755.12 Tm /F9 12.0 Tf 0.000 0.000 0.000 rg (References) Tj 1 0 0 1 72.00 740.24 Tm ([1]Department of Health. Best 㽶Ƶ for Best Health: A new National Health 㽶Ƶ) Tj 1 0 0 1 72.00 725.36 Tm (Strategy \(Consultation Document\). London: Department of Health, 2005.) Tj 1 0 0 1 72.00 695.60 Tm ([2]Department of Health. Patient and public involvement in the new NHS London: Department of) Tj 1 0 0 1 72.00 680.72 Tm (Health, 1999.) Tj 1 0 0 1 72.00 665.84 Tm ([3]Department of Health. 㽶Ƶ and Development for a First Class Service. London:) Tj 1 0 0 1 72.00 650.96 Tm (Department of Health, 2000a.) Tj 1 0 0 1 72.00 636.08 Tm ([4]Department of Health. A Quality Strategy for Social Care. London: Department of Health,) Tj 1 0 0 1 72.00 621.20 Tm (2000b.) Tj 1 0 0 1 72.00 606.32 Tm ([5]Department of Health. A 㽶Ƶ and Development Strategy for Public Health. London:) Tj 1 0 0 1 72.00 591.44 Tm (Department of Heath, 2001.) Tj 1 0 0 1 72.00 576.56 Tm ([6]Department of Health. The NHS Cancer Plan; a plan for investment, a plan for reform.) Tj 1 0 0 1 72.00 561.68 Tm (London: Department of Health, 2000.) Tj 1 0 0 1 72.00 546.80 Tm 0.000 0.000 0.000 rg ([7]Department of Health. 㽶Ƶ Governance Framework for Health and Social Care. London:) Tj 1 0 0 1 72.00 531.92 Tm (Department of Health, 2003.) Tj 1 0 0 1 72.00 517.05 Tm 0.000 0.000 0.000 rg ([8]Telford R, Boote J, Cooper C. What does it mean to involve consumers successfully in NHS) Tj 1 0 0 1 72.00 502.17 Tm (research? A consensus study. Health Expectations 2004; 7:209-220.) Tj 1 0 0 1 72.00 487.29 Tm ([9] North Trent Cancer 㽶Ƶ Network Annual Report 2004 Sheffield: NTCRN) Tj 1 0 0 1 72.00 472.41 Tm 0.000 0.000 0.000 rg ([10]Stevens T, Wilde D, Paz S, Ahmedzai SH, Rawson A, Wragg D. Palliative care research) Tj 1 0 0 1 72.00 457.53 Tm (protocols: a special case for ethical review. Palliative Medicine 2003b; 17) Tj /F10 12.0 Tf (:) Tj /F9 12.0 Tf ( 482-490.) Tj 1 0 0 1 72.00 442.65 Tm 0.000 0.000 0.000 rg ([11]Stevens T, Wilde D, Kirby D, Stewart D, Wragg D, Cunningham D, Darbyshire J, Ahmedzai) Tj 1 0 0 1 72.00 427.77 Tm (S 2005 Consumer Involvement in Cancer 㽶Ƶ in the United Kingdom: The Benefits and) Tj 1 0 0 1 72.00 412.89 Tm (Challenges. In: Lownes L, \(ed.\) ) Tj /F11 12.0 Tf (Involving service users in research) Tj /F9 12.0 Tf ( London: Routledge) Tj 1 0 0 1 72.00 398.01 Tm ([12] Hunt J. How cancer service users can influence research and practice. Nursing Times 2002,) Tj 1 0 0 1 72.00 383.13 Tm (98,33:32.) 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