The value of engaging patients in researchCAHO Healthier, Wealthier, Smarter: A Health Research Agenda for Patients,

People and Prosperity, Toronto, 1st June 2015

Simon Denegri, NIHR National Director for Patients and the Public and Chair, INVOLVE

NIHR, ‘the research arm of the NHS’

• Vision: ‘to improve the health and wealth of the nation through research’

• Mission: ‘ to maintain a health research system in which the NHS supports outstanding individuals, working in world-class facilities, conducting leading-edge research focused on the needs of patients and public.’

“I have always taken the view that public

involvement in research should be the rule not

the exception.” Professor Dame Sally Davies, Chief Medical Officer (CMO)

NIHR, patients, carers and the public

• Public ‘involvement:’ core principle of NIHR’s ‘business’ from the beginning

• Increasingly embedded as an ethos across NIHR system• Clear expectation set with researchers• Approach built on ‘partnership’ working • Solid and sustainable funding• Seen as vital component in pursuing ‘growth agenda’

“I have always taken the view that public involvement in research should be the rule not the

exception.” Professor Dame Sally Davies, Chief Medical Officer (CMO)

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

Established in 1996 INVOLVE is a national advisory group funded by, and part of, the NIHRhttp://www.invo.org.uk/

How we do it? • Leadership across NIHR• Build and share the

evidence base• Develop capacity and

capability• Influence policy and

practice

Going the extra mile with patients and the public in research #ppitogether

Vision, mission, principles• Vison A population actively involved in

research to improve health and wellbeing for themselves, their family and neighbours

• Mission The public as partners in everything we do, delivering high quality research that makes a difference to people’s lives

• PrinciplesRecognising people and their experiences as assets; building on their existing capabilities; promoting mutuality and reciprocity; developing peer support networks; breaking down barriers between professionals and the public; being facilitative

Common goals Opportunities to be involved in

research are visible and seized on by the public.

It is standard practice for the public and professionals to work together

The experience of patients, service users and carers is valued

Public involvement is a required part of high quality research

Evidence of what works is easily available and can be put into practice.

The NIHR has maintained its global presence and influence for working with the public

The UK public and research in numbers

691 NIHR reviewers

> 600,000 research participants in 2013/14

1.4 million INVOLVE website visitors in 2014/15

89% of people willing to take part in research

3% of people would not take part in a clinical trial

http://www.nihr.ac.uk/documents/about-NIHR/NIHR-Publications/NIHR%20Christmas%20xmas%20stats%202014.pdf

The value of working with the public in research

Why do people get involved?

• Personal need or benefit• To have a say – ‘voice’• Wanting to make a difference• To change how care is given• Altruism • Frustration • Personal development• Control…….

Stop ticking the box…..…

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: research priorities

http://www.netscc.ac.uk/news/item/08042013.asp

Refinement: research efficiency and effectiveness

‘The aim of patient and public involvementis to improve the quality, feasibility and translational value

of research...[This] is the first timewe can see that patient involvement is linked to higher

likelihood of reaching recruitment target – and as a result, study success.’

Professor Til Wykes, Director, MHRN‘Patient involvement in research boosts success,’

The Guardian, 16/09/13Paper reference: Ennis, L. et al. ‘Impact of patient involvement

in mental health research: longitudinal study’ British Journal of Psychiatry

(Sept 2013) doi: 10.1192/bjp.bp.112.119818

Design

Reach: seldom heard groups, and young people

http://www.clahrc-em.nihr.ac.uk/clahrc-em-nihr/east-midlands-centre-for-black-and-minority-ethnic-health.aspx

Partners in innovation

“I don’t actually think of the patients who work with us as PPI members: they’re colleagues, they’re people with good ideas. To me, they’re part of the team like the statistician or the qualitative researcher or the clinician.”Professor Hywel Williams, Professor of Dermato-Epidemiology and Director,Centre of Evidence-Based Dermatology, University of NottinghamSenior Investigators, Leaders for patient and public involvement in research, INVOLVE 2014

Working with the health system to improve participation and engagement

Cometh the hour, cometh the patient

‘We stand on the cusp of a revolution in the role that patients – and also communities – will play in their own

health and care. Harnessing what I’ve called this renewable energy is potentially the make-it or break-it difference between the NHS being sustainable – or not.’

Simon Stevens, NHS CEO, NHS Confederation Annual Conference, June 2014

NIHR Strategic Plan for Participation and Engagement launched on 20 May 2014

• Better outcomes for all in health and care• People choosing to take part in research• People defining research of the highest

quality• People understanding the evidence on which

their care is based• Improving people’s experience in research

‘Promoting a research active nation’

Public appetite

• 82 per cent of people believe it is important for the NHS to offer opportunities to take part in healthcare research.

• 89% of people would be willing to take part in a clinical research study.

NIHR Clinical Research Networks Survey Oct 2014

• 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 2012/2013/2014– 1 in 3 patients had a discussion

about research with a health professional

• 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

Every willing patient a research patient

Making research part of the care pathway

Five key features of the ‘research’ hospital for patients

• Research is visible to the naked eye• People can choose how to contribute• Their experience is valued as part of research

excellence• They see research as a mark of quality in their

hospital• They get to see the results

The research hospital

http://simondenegri.com/2013/11/04/rbandh-guest-blog-promoting-clinical-research-locally-from-ok-to-ask-to-research-changed-my-life

/

‘OK to Ask’ campaign: Intl Clinical Trials Day

2015

Patient stories

• Encouraging patients and carers 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

Patient research ambassadors

Better routes to participation

Improving the patient experience

Improving patient experience:• Removing barriers • Information and consent• Quality of care• Relationship with professionals• When the trial is over – results

and acknowledgement?

…to improve the regulatory environment

HRA Public Dialogue Exercises

• 77% of people said that knowing a Research Ethics Committee had reviewed a study would increase their confidence in it.

• 44% of respondents thought that involving patients….would increase their confidence in the study.

• HRA and MHRA now have public involvement strategies and structures in place

Ipsos MORI study for HRA: 2013

http://www.hra.nhs.uk/news/2013/11/22/patient-involvement-increases-public-confidence-health-research/#sthash.x3fCMNWj.dpuf

The future of public engagement in research

Future challenges in engagement• Public engagement in

implementation and diffusion

• Use of patient data• Harnessing new and

social media• Focus v frenzy

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

Prof. Samuel Their, Harvard UniversityMay 2013, Launch of the UK eHealth Informatics Research Centres and Network

QuestionsSimon.Denegri@nihr.ac.uk

Twitter: @SDenegriBlog: http://simondenegri.com/

involvementlastminute.com