The document discusses public involvement in UK health research. It finds that most people support healthcare research and many would consider participating. However, few patients discuss research options with their doctors or receive information about available studies. The National Institute for Health Research aims to improve public participation through several initiatives. These include supporting relevant research, open data sharing, and empowering patients to help guide research priorities and experiences. The goal is to develop partnerships between researchers and the public to improve research quality and patient outcomes.

1. Only connect: working together to improve research
Simon Denegri, Chair, INVOLVE; NIHR National Director for Public Participation
and Engagement in Research
Leeds, June 2013

3. What happened

4. Feedback

5. 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 (i.e. 1 in 5 for type
1 diabetes)
• 91% of Trusts do not provide
information to support patient
choice in research: NIHR CRN CC
Mystery Shopper 2013

6. IPSOS MORI Poll for Association of Medical Research Charities, 2011

7. ‘Only 9% of patients wanted more research on
drugs, yet over 80% of randomised controlled
trials in patients with osteoarthritis of the knee
were drug evaluations.’
‘Relations between the agendas of the research community and the research
consumer’ Tallon et al, Lancet 2000 as cited by
Iain Chalmers and Paul Glasziou, The Lancet, 2009

8. Adding value to research
Five pillar framework being taken forward by NIHR with
patients and the public:
• relevant and important research questions
• appropriate methodology
• timely and efficient delivery
• fully accessible publication of findings
• useable and useful outputs

9. Improved patient outcomes
‘

10. "The Government is committed to the
promotion and conduct of research as a core
NHS role"
NHS in the White Paper, "Equity and excellence: Liberating the NHS,” 2010

11. 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 – INVOLVE -
has given agenda strong platform
• Success built on ‘partnership’ working
• Clear expectation set with research community

12. Public involvement in UK health research
Leadership, evidence, capacity, influence
• Focus on ‘quality’
• Strategic partnerships and collaboration
• Principles and standards
• Governance and accountability
• Removing practical barriers

13. People making research happen
• 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. Supporting people to make research
happen
• Choice
• Leadership
• Involvement
• Experience
• Regulators

15. Makeresearchhappen.com

16. Local CRNs
CLAHRCs
AHSNs

17. “In the future the public will be more technically
sophisticated, inquisitive and informed than ever
before.”
Professor Samuel Thier, Harvard University
Speaking at the launch of the UK eHealth Informatics Research
Centres and Network, May 2013

18. Thank you
Simon.Denegri@nihr.ac.uk
www.invo.org.uk
Twitter: @Sdenegri
Blog: http://simondenegri.com/