Public involvement, health research and young peopleNuffield Council Working Party on Children and Clinical Research, September

2013

Simon Denegri, Chair, INVOLVE; NIHR National Director for Public Participation and Engagement in Research

Jenny Preston, Consumer Liaison Manager, NIHR MCRN

Citizen driven health and wealth

“In the future the public will be more technically sophisticated, inquisitive and informed than ever

before.”

Professor Samuel Thier, Harvard UniversitySpeaking at the launch of the UK eHealth Informatics Research

Centres and Network, May 2013

Citizen driven health and wealth

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Public involvement = value, efficiency and accountability

NIHR leadership in 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• £M investment

A working definition of public involvement

INVOLVE defines public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.

This includes, for example, working with research funders to prioritise research, offering advice as members of a project steering group, commenting on and developing research materials, undertaking interviews with research participants.

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

Adding value to research

‘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

Relevance, reach, recruitment, results

• 15 James Lind Alliance (JLA) Priority Setting Partnerships completed, approx. 10 on the way

• Almost 40,000 hits per month on the INVOLVE website and 1,000 on ‘People in Research’

• Growing ‘research active’ communities in specific disease areas (89 diabetes studies had lay input into design and delivery during 2012/13)

• 630,00 people recruited to take part in clinical research in 2012/2013, triple the number six years ago

• 425 members of the public involved in NIHR review panels, many more reviewers!

• Increasing number of NHS Trusts with research ambassadors

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

From willing to active research citizens

IPSOS MORI Poll for Association of Medical Research Charities, 2011

From willing to active research citizens

Young people as decision makers

“Our vision is for real collaboration with young people and parents/carers at every feasible stage of the research process”

Our vision

http://www.meds4kids.nhs.uk/events/annual_meeting_2013.shtml

Working with Industry

Streamlining & simplifying the research approval process– HRA Consultation March 2013

“I was very impressed by the group. They gave serious consideration to some complex issues and were clearly very well informed about research. It was a pleasure to work with them”. Amanda Hunn HRA

Key topics the HRA wanted our views on included:

How young patients should be recruited and consented for clinical trials.

The extent to which we might feel protected by the newly proposed approval process or even at risk

The measures needed to ensure trust in the system and a feeling of safety.

And generally, to get our views on the proposed process and ask us how best to include young people and families in research

Designing information fit for purpose – working with NRES

How long will it take?

What is the aim?

What is the drug?

What will I have to do?

Do we have to go ahead with it?

Who will it benefit?

Are there any side effects?

Ethics

Invitation Paragraph

Other medicines

Who is funding the study

What happens when the study ends

What is research

Why were we chosen

Leaflets or A5 bookletsColour

Relevant picturesConcise text

Break it downNo acronyms

Don’t lie to us.Don’t patronise.

What we do and don’t want to know:

Young people’s views on the challenges of research

International Clinical Trials Day• International Clinical Trials Day on

20 May 2013– Theme: “It’s OK to ask”…– Encouraging patients to ask

their clinician about clinical research (and log response/suggestions)

– Encouraging clinicians to consider their response if a patient does ask: how to channel interest

– Asking other stakeholders to show their support by using the campaign badge

Further Information

Newman et al (June 2012) Medicines for Children: reflecting

on how young people improve research in this area. The Active

Involvement of Children and Young People in Health and Social Care

Research. (Routledge)

Thank youSimon.Denegri@nihr.ac.uk

www.invo.org.uk Twitter: @SDenegri

Blog: http://simondenegri.com/

Jennifer.preston@liv.ac.ukTwitter: #generationr

involvementlastminute.com