Leicester CLRN Meeting 'Making it real' 19 June 2013


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Leicester CLRN Meeting 'Making it real' 19 June 2013

  1. 1. Making it real: patients and public improving healthcare research Simon Denegri, Chair, INVOLVE; NIHR National Director for Public Participation and Engagement in Research Leicester, June 2013
  2. 2. Public involvement in UK health research • Core principle of National Institute for Health Research (NIHR) • NIHR leadership based on evidence of public involvement driving research quality • NIHR funding for national advisory group has given agenda strong platform • Success built on ‘partnership’ working • Clear expectation set with research community • A ‘deal-breaker’ and ‘marriage maker’
  3. 3. Priority setting Design Engagement Delivery From setting research priorities to design and delivery
  4. 4. The funding landscape ‘Public involvement in research applications to NRES,’ INVOLVE/NRES Report 2011
  5. 5. The future looks like….better definition Leadership, evidence, capacity, influence • Focus on ‘quality’ • Strategic co-ordination • Principles and standards • Governance and accountability • Collaboration and partnership in key areas
  6. 6. Best research, with patients, for best health
  7. 7. Citizen driven health and wealth 0 1 2 3 4 5 6 7 2012 2014 2015 Growth
  8. 8. Policy, legislative and organisational framework • Life Sciences Strategy • Health and Social Care Act 2012 • NHS Choice Framework • NHS Constitution; use of medical records in research • Re-organisation: CCGs, Healthwatch, Clinical Research Networks (CRNs), Academic Health Science Networks (AHSNs) ‘Patient experience is the most important concern for the NHS Commissioning Board’ Sir Malcolm Grant , Chair, NHSCB
  9. 9. Challenge areas • Patient pull-through: increasing willingness to take part in clinical research • Enabling patient choice in research as part of the care pathway • Responding to the patient challenge over how research is conducted and their part in it • Encouraging NHS leadership and culture to see research as a key driver of quality • Information-sharing, transparency and openness: putting a human face on data to inform choice and improve health
  10. 10. Patient participation in NHS research Public appetite • 82 per cent of people believe it is important for the NHS to offer opportunities to take part in healthcare research. • Less than 7% said they would never take part in a clinical research study. NIHR Clinical Research Networks Survey May 2012 • Over 70% of patients look for information about clinical trials ecancer 5 235 2011 ‘Information needs of cancer patients’ Patient experience • National Cancer Patient Experience Survey 2012 – 1 in 3 patients had a discussion about research with a health professional – > 53% who were not asked, would like to have been • Discussion much less likely if happening at all for patients with other conditions • 91% of Trusts do not provide information to support patient choice in research: NIHR CRN CC Mystery Shopper 2013
  11. 11. The building blocks of change: involvement, choice, insight, leadership
  12. 12. ‘Every patient who walks through our hospital doors is offered the chance to take part in a clinical trial’ I was able to refer myself to a clinical trial unit They told myself and other patients what they found out in the trial before anyone else. It was easy for me to find out what’s going on locally I was able to discuss taking part in research with my doctor shortly after I was diagnosed I feel as though I was able to make a difference Patients can talk to other patients in our Trust to find out more about research My care and treatment was of a higher quality I joined the national register for research First I took part and now I help design trials. How good is that?
  13. 13. Patient-driven access • Vision will be achieved by patients and the public: – Asking about research – Choosing to take part in research – Knowing their contribution has made a difference – Shaping the way in which research is designed and delivered – Leading change at local and national level to make research happen – Reporting on and sharing their experiences with commissioners and providers
  14. 14. A framework for patient-centred research in the NHS
  15. 15. Makeresearchhappen.com
  16. 16. Patient-driven access • Collaborative working to: Supporting patient choice Defining and diffusing models of public involvement that drive participation Improving public awareness and understanding Learning from patient insight and experience Supporting patient and organisational leadership
  17. 17. UKCTG Public and Patient Feedback • Only 28% had taken part in a clinical trial • 38% knew little or nothing about clinical trials and would like a clear and reliable source of information to learn more; • 64% would like to find out about trials recruiting in their local area • 66% found UKCTG ‘easy’ or ‘very easy’ to find their way around • 67% found the information provided on the site ‘very clear’ or ‘fairly clear’ • 72% said that UKCTG should help them make direct contact with a clinical trial without going through their doctor • 88% said the site should provide relevant links to patient groups, medical researchers and funders relevant to a clinical trial • 88% would recommend the site to others.
  18. 18. ‘It’s ok to ask’ International Clinical Trials Day (ICTD): 20th May 2013
  19. 19. Permission to redefine boundaries
  20. 20. What we aspire to: A dynamic partnership between the public, researchers and others, to advance NHS, public health and social care research and improve the health and well being of the population A national advisory group funded by, and part of, the National Institute for Health Research. What is INVOLVE? How we do it? • Leadership across NIHR • Build and share the evidence base • Develop capacity and capability • Influence policy and practice
  21. 21. Local CRNs CLAHRCs AHSNs
  22. 22. Thank you Simon.Denegri@nihr.ac.uk Twitter: @Sdenegri Blog: http://simondenegri.com/