Clinical Research Networks

Transcription

1 s Dr Natalie Pattison NIHR National Specialty Group Nursing Lead for Critical Care Trust lead for PPI in Research Senior Clinical Nursing Research Fellow The Royal Marsden NHS FT

2 The UK research landscape

3 The UK research landscape Political commitment to supporting life-sciences industry Health & Social Care Act 2012 / NHS Constitution 2013 Embed clinical research in all aspects of care

4 The NIHR The National Institute for Health Research (NIHR) is funded by the Department of Health to improve the health and wealth of the nation through research. The NIHR plays a key role in the Government s strategy for economic growth, attracting investment by the life-sciences industries through its world-class infrastructure for health research. Together, the NIHR people, programmes, centres of excellence and systems represent the most integrated health research system in the world. The NIHR is the research arm of the NHS.

5 Where we fit in

6 CRN workforce and structure The NIHR CRN Consortium and Alliance brings excellence from the NHS, university and private sectors

7 CRN workforce and structure 15 Local s National Coordinating Centre Network funded staff in NHS hospital trusts, universities and other health and social care settings 30 clinical specialties managed via six specialty cluster leads with oversight from the CRN Executive Team

8 How the CRN works The CRN supports studies by: Funding research support posts in the NHS and providing training, so that researchers have access to experienced front-line staff, who can carry out the additional practical activities required Providing funding to meet the costs of using facilities, such as scanners and X- rays that are needed Helping identify and recruit patients, so that researchers can be confident of completing the study on time, and on target

9 Clinical Specialties Each local delivers research across 30 clinical specialties: Ageing Anaesthesia, perioperative medicine and pain management Cancer Cardiovascular disease Children Critical care Dementias and neurodegeneration (DeNDRoN) Dermatology Diabetes Ear, nose and throat Gastroenterology Genetics Haematology Health services and delivery research Hepatology Infectious diseases and microbiology Injuries and emergencies Mental health Metabolic and endocrine disorders Musculoskeletal disorders Neurological disorders Ophthalmology Oral and dental health Primary care Public health Renal disorders Reproductive health and childbirth Respiratory disorders Stroke Surgery

10 Local CRNs 1. North East and North Cumbria 2. North West Coast 3. Yorkshire and Humber 4. Greater Manchester 5. East Midlands 6. West Midlands 7. West of England 8. Thames Valley and South Midlands 9. Eastern 10. Kent, Surrey and Sussex 11. Wessex 12. South West Peninsula 13. North Thames 14. South London 15. North West London

11 Our Vision Clinical research is an integral part of healthcare for all Purpose Our national network makes people and the NHS better by enabling and embedding high quality clinical research as an integral part of healthcare. As part of the NIHR, we improve the health and wealth of the nation through health research. Goals to support our purpose Increase the opportunities for all people across England to participate in and contribute to health research Provide researchers with the practical support they need to make clinical research studies happen in the NHS Work as a single network to improve the delivery of high quality clinical research Provide a coordinated and innovative approach to national research priorities Increase national and international clinical research investment to support the country s growth Enablers Use information to drive improvement Innovate using technologies to add value Develop high quality partnerships Engage with our customers and stakeholders Promote the contribution of the NIHR and NHS research

12 Our aims The CRN aims to: Promote equality of access, ensuring that wherever possible, patients have parity of opportunity to participate in research Improve the quality, speed and coordination of clinical research by removing the barriers to research in the NHS Streamline and performance manage NHS support for eligible studies, to ensure that the NHS service support costs of these studies are met in a timely and efficient manner Work in partnership to unify and streamline administrative procedures associated with regulation, governance, reporting, and approvals Meet the research delivery needs of the life sciences industry, Including pharmaceutical, biotechnology, diagnostic, medical technology and contract research organisations (CROs) Further integrate health research and patient care Engage the NHS in research, in line with the NHS Constitution to promote research participation and a research culture

13 Our high level objectives 1.Increase the number of participants recruited into NIHR CRN Portfolio studies 2.Increase the proportion of studies in the NIHR CRN Portfolio delivering to recruitment time and target 3.Increase the number of commercial contract studies delivered through the NIHR CRN 4.Reduce the time taken for eligible studies to achieve set up in the NHS 5.Reduce the time taken to recruit first participant into NIHR CRN Portfolio studies 6.Increase NHS participation in NIHR CRN Portfolio studies 7.Increase the number of participants recruited into Dementias and neurodegeneration (DeNDRoN) studies on the NIHR CRN Portfolio

14 Key statistics 2015/16 Recruitment into NIHR CRN Portfolio studies in England

15 Key statistics 2015/16 Number of studies supported by the NIHR CRN

16 Key statistics 2015/16 Improved study set-up and delivery 100 per cent of NHS trusts have recruited participants into NIHR CRN Portfolio studies 74 per cent of NHS trusts recruited to commercial contract studies The Network continues to demonstrate that the UK is internationally competitive in speed of study set-up by recruiting 27 global and European first patients into multiple studies in 2015/16 600,000 patients involved in research in 2015/16

17 Key statistics 2015/16 63 per cent of commercial contract studies achieved first participant recruited within 30 calendar days 46 per cent of non-commercial studies achieved first participant recruited within 30 calendar days

18 Key statistics 2015/16 CRN supports the Government s 2020 Dementia Challenge

19 Our campaigns The NIHR CRN delivers campaigns to promote clinical research and raise awareness to patients and the public nationally and locally Recent annual campaigns include: OK to Ask Research Activity League Table Spotlight on Health Service Journal Clinical Research Impact award

20 OK to Ask What is it? The NIHR OK to Ask campaign is promoted each year on International Clinical Trials Day (20 May). The campaign encourages patients to ask their doctor about taking part in NHS clinical research. The campaign also highlights that patients have a right to take part in research opportunities. 95% of people say it is important to them that the NHS carries out clinical research However, less than 21% said they would feel very confident about asking their doctor about research opportunities Who is involved? A number of NHS trusts promote the campaign within their hospitals through different channels including an OK to Ask event. Resources Join us on facebook:

21 Research Activity League Table What is it? The annual Research Activity League Table shows the extent of research activity across all NHS trusts in England. The table is promoted by nationally and locally involving patient interviews and case studies. What does it show? The table shows how much clinical research is happening, where, in what types of trusts, and involving how many patients. Resources To find out more go to:

22 Spotlight Campaigns The NIHR CRN runs a number of national spotlight campaigns throughout the year focused on a specific condition or area of research, to increase awareness of research to patients, the public and healthcare professionals. Spotlight campaigns include; Spotlight on Obesity - January 2016 This campaign launched in January 2016, to coincide with Obesity Awareness Week. It raised awareness of NIHR research into tackling obesity in the UK, highlighting patient stories and public perceptions through local and national media. Spotlight on Mental Health - February 2016 This is a stakeholder engagement campaign raising awareness of research into children and young people s mental health. The campaign launched during Children s Mental Health Week, 8-14 February 2016.

23 Study Support Service The NIHR supports researchers and the lifesciences industry in developing, setting up and delivering high quality research to time and target in the NHS in England For any study that is eligible or applying for Network support, whether commercially or non-commercially sponsored, there are a range of services across the research pathway Regardless of the location, study type, study size or therapy area of the research, consistent and high quality support will be provided Whether it is help with regulatory approvals, assistance with site identification, or guidance with the costings for a study, our dedicated advisors are here to help. This infrastructure provides unparalleled access to, and understanding of, the NHS research environment.

24 Results in practice Research helps to improve quality and productivity in the NHS We supported the STarT Back study which looked at a new stratified approach to managing back pain The study showed improved patient outcomes and calculated cost savings of 34 per patient This new approach is now being applied across the country Information on the startback tool is available from and ool/

25 Results in practice We supported the text2stop study The original recruitment strategy wasn t attracting enough recruits Most smoking cessation happens in primary care, so the Network enrolled general practices to contact suitable patients directly As a result the study closed four months ahead of schedule At people can register to receive free daily motivational test messages to help them quit

26 Results in practice We helped researchers to prove that a new vaccine provided better protection for children against pneumococcal disease The vaccination programme for all children in England has changed as a result Information available on NHS choices: ons/pages/pneumococcalvaccination.aspx

27 How do I get onto a clinical trial? UK Clinical Trials Gateway: 27

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30 Cancer Research UK ut-cancer/find-a-clinical-trial 30

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32 Keep up-to-date Visit our website for the latest news and sign up to our newsletters by going to: uk/news

33 Patient and Public Involvement and Engagement Programme (PPIE) Strategy Five year goals ( ) 1. Talk about research in the NHS: We will help raise awareness of research by improving the availability, variety and usefulness of accessible information. 1. Make it easy for people to participate: We will work in partnership with patients, carers and the public to reduce barriers to participation. 1. Reach out: We will ensure greater diversity by engaging communities so that a wider range of people get more opportunities to participate and to be involved. 1. Connect with the public, healthcare professionals and partners: We will increase engagement to improve connectivity and will be innovative in the way we communicate e.g. by the use of digital and social media. 1. Support and value patient public involvement and engagement: We will strengthen partnerships making involvement a meaningful and effective part of improving the quality of service

34 How does PPIE learning support our 5 year goals? 1.Talk about research in the NHS - improving awareness and access to information 1.Make it easy for people to participate - build public, patient, carer partnerships to reduce barriers 1.Reaching out building diversity, engaging communities 1.Connect with public, healthcare professionals and partners - increasing connectivity and engagement, innovate via digital and social media 1.Support and value PPIE- strengthen partnerships, meaningful involvement driving service improvement

35 Building Research Partnerships Facilitated workshops involving lay people and professional groups Aimed at research staff, healthcare professionals, patients, carers and the public Supports practical problem solving enabling delivery of patient focused research in the NHS

36 What is it? Where is it running? Building Research Partnerships (BRP) are facilitated workshops; staff and patients working together on practical issues to help make a difference to recruitment to research studies The CRN network supports local delivery of BRP workshops as part of its patient, public involvement and engagement programme

37 MOOC: Improving Healthcare through Clinical Research Massive Open Online Course:MOOC How medical treatments are discovered, tested and evaluated to improve healthcare for all Available to anyone around the world, free to follow, flexible bite size learning 1st ran November 2015, runs at least twice a year Developed by CRN, working with Leeds University, hosted by FutureLearn Watch a short video trailer here, watch a patient's highlight video here MOOC materials available to all who register even when the 4 week course has ended Register now at:

38 MOOC: Numbers and impact Joiners: 8845, learners in over 80 countries Nearly 94% said MOOC met or exceeded their overall expectations Nearly 84% said it added a fresh perspective to their role 92% said it added to their learning about the subject Over 90% said it helped them learn flexibly around other commitments (From Nov 2015 course)

39 Learning framework supporting PPIE Continue the conversation - @beatdementia #myresearchlearning Patient stories learning from real involvement stories INVOLVE- PPIE information & guidance for all PPIE in NIHR funded research A-Z of medicines research & development #EUPATI Toolbox CRN Learn Online, face to face courses Intro to Good Clinical Practice Specific roles:lay reps on CRN research & partnership webinars & videos for professionals & their communities Research in care homes Continuing my learning and involvement Research discovery Improving Healthcare through clinical research - MOOC how treatments are discovered, developed and tested Making sense of health evidence-the informed consumer The Science of Medicines-how & why medicines work for patients Starting out with online learning- Learning online: Searching and researching Research Friends Patient Research Join Dementia Research-Dementia Generation R young people improving health through research Campaign newsletter - keeping in touch What s happening in your local area-local research networks Getting involved Finding out more CRN Induction: Who we are, what we do Learning about benefits of involving patients in research- CRN Learn Building Research Partnerships: How research works, patients and professionals working together to shape research delivery Range of projects and campaigns involving public in research-crn website Finding research studies and taking part -UK Clinical Trials Gateway Listen to people s experiences of taking part in research Join the conversation- @beatdementia #myresearchlearning

40 PPIE Projects National Association for Patient Participation Patient (N.A.P.P.) Engagement Award Patient Experience of Research Surveys Patient Centred Communications Project Patient Research Ambassador Initiative

41 N.A.P.P. Patient Engagement Award Aimed at Patient Participation Groups in Primary Care, this award was run in 2014 and 2015/16 in partnership with the National Association for Patient Participation (N.A.P.P) the award recognised research initiatives Award will not be run again during 16/17 but a project to help raise research awareness with PPGs is being considered

42 Patient Experience of Research Surveys (1) In 2014/15 the first Patient Experience of Research Surveys were carried out by a number of LCRNs. During 2015/16-piloting of some national survey questions undertaken in preparation for developing approach supporting national and local data collection. The report of the pilot survey recommended inclusion of core national questions with additional locally determined questions covering 6 key areas of patient experience for future surveys. For 2016/17 we are developing a CRN wide patient experience framework for continuous improvement.

43 Patient Experience of Research Survey (2)

44 Patient Experience of Research Survey (3)

45 Patient Research Ambassador Initiative (PRAI) What is a Patient Research Ambassador? A Patient Research Ambassador is someone who promotes health research from a patient point of view. They could be a patient, service user, carer or lay person who is enthusiastic about health research and willing to communicate that to other patients and public as well as healthcare professionals. Why do we need Patient Research Ambassadors? We want to embed a patient-centred research culture in the NHS. To do this, we need to engage both patients and NHS research staff in better ways.

46 PRAs can help their local NHS improve choices for patients about participation is studies PRAs can become future patient leaders for research if they so choose.

47 Work with Charities

48 PPIE Programme Find out more: Royal Marsden PPI team: Contact the PPIE Team @royalmarsden

49 Thank you Any questions?