From ‘subject’ to ‘partner:’ public involvement in health research

Alberta Cancer Foundation, 31st January 2015

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

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

Why involve the public in health research?

• Accountability – ‘protect and promote the public interest’

• Improving the quality of what we do: ‘research excellence’

• Improving health and wellbeing - outcomes• Ensuring value and efficiency• Increasing participation• Knowledge transfer

The National Institute for Health Research (NIHR) approach to public involvement in

research

Participation, engagement, involvement

A working definition of public involvement

….public involvement in research = 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.

Public involvement in the National Institute for Health Research (NIHR)

• Core principle of NIHR’s ‘business’• PPI leadership across a distributed research system• Solid and sustainable funding• Success built on ‘partnership’ working • Clear expectation set with researchers

• A ‘marriage maker’ or a ‘deal-breaker’

“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 National Institute for Health Research. http://www.invo.org.uk/

What is INVOLVE?

How we do it? • Leadership across NIHR• Build and share the evidence base• Develop capacity and capability• Influence policy and practice

The UK public and research in numbers691 NIHR reviewers

634,000 research participants

1,000,000 INVOLVE website visitors11.2 Million funders

89% of people are 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

Putting trust into the system

• 7 in 10 people think that Government, regulators and research organisations should listen to the public more

• 3 in 10 of us would be willing to get involved

PAS Report, 2014, Department for Business, Innovation and Skills https://www.ipsos-mori.com/researchpublications/researcharchive/3357/Public-Attitudes-to-Science-2014.aspx

Putting trust into the system

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

Increasing research effectiveness and efficiency

‘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

Shaping research design for the future

Coming to Calgary!

Emerging approaches to public involvement in health research: charities

and foundations

Setting research priorities

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

Better informed funding decisions

‘…..the driving force behind the USER project was, and still is, a desire to influence funding practice, helping to steer the research agenda along a path set by both the charity’s goals and the aspirations and needs of the individuals who support the charity and hopeto benefit from its research.’ http://www.arthritisresearchuk.org/research/our-committees/join-our-committees/user-stakeholder-committee.aspx

Partners in design and delivery: networks

http://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200422

Building research capacity and capability

Making research part of the care pathway

Working with the health system to improve participation and engagement

Public appetite

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

• 3% said they would never 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

From willing to active patients

The baked beans test

“Some people sit in a bath of baked beans or run a marathon. For me, I

just thought ‘if not me then who?’ “It’s nice to be part of it and it gives you a

way to help.”

Sheridan EdwardOpera singer, Ebola vaccine clinical

trial volunteer on standby!

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’

‘OK to Ask’ campaign: Internation

al Clinical Trials Day

2014

Ambassadors and champions

• 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

Digital platforms for participation and more

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?

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

/

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

And finally……..

QuestionsSimon.Denegri@nihr.ac.uk

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

involvementlastminute.com

Public involvement in NIHR funded research: from partnership to co-

production

What people told us about PPI in 2014

• The value of working with the public, and the difference it makes to the quality of research

• Inconsistencies in practice and implementation across NIHR and other funders

• Barriers to the public contributing to research including awareness, attitudes and support

• The importance of partnership and collaboration to future success

• The need to recognise and share good practice.

People’s future priorities #PPI2025• Greater public awareness of research and the NIHR’s

role in making it happen• Actionable evidence of the value of public involvement• Locally relevant but strategically consistent

implementation• Clarity over quality and good practice in public

involvement• Agreed measures for how public involvement is making

a difference• Better links with the NHS and other funders and global

partnership

Partners in everything we do

‘Public involvement [should] be so embedded in the culture of NIHR that new staff or new

researchers coming into the field would naturally take on the values and practices of effective

public involvement.’

 

Common goals• Opportunities to engage and become involved in research are

visible and seized by the public. • It is standard practice for the public, researchers and health

professionals to work together with confidence and success.• The experience of patients, service users and carers is a

fundamental and valued source of knowledge.• Public involvement is a required part of high quality research

researchers and their institutions.• Evidence of what works is easily available and can be put into

practice.• The NIHR has maintained its global presence and influence for

working in partnership with the public

A simpler proposition to the public

‘………..it gets complicated, confusing and messy. People need to know what is out there, how they can get

involved and why it's happening.’

‘Our vision for PPI in research in ten years’ time is that of ...a vast increase in the number of people who know about PPI and have taken part in some way in local

research.’

Strategic leadership - ‘One NIHR’

‘Real progress in PPI will not be achieved without an effective mechanism for coordinating PPI

efforts across the now many NIHR bodies that have a role in developing, fostering, or

implementing PPI…..’

Locally driven, strategically consistent

‘There is far too much duplication, working in silos and re-inventing the wheel. We need to free ourselves up to

enable more time and resources for innovation and creativity. ‘

‘Perhaps regional networks, such as the CLAHRCs and AHSNs can be instrumental in providing a coordinated, clear single message to the public. They could also act as single point of contacts to their communities for all PPI opportunities in their regions ….simplifying access

and reducing confusion for the public.’

A locally driven, strategically consistent system

Locally driven• Resources weighted towards local

‘delivery’• Collaborations/collaborative

working• Clear definition of local health

needs and involvement of communities in priority setting

• Emphasis on communities v individuals – ‘reach’

• Clear ‘line of sight’ from local to centre – transparency

• Innovation

Strategically consistent• Accountability• Sets tone and style• In line with NIHR goals• Focus on facilitative actions• Problem solving strategic

issues cutting across boundaries

• High-level monitoring and evaluation

• Scale

Continuous improvement

‘The NIHR should commission the development of a set of values, principles and standards for public

involvement…..They should be framed in such a way, and with a clear set of self-assessment criteria, so that

organisations across the NIHR see their adoption as integral to their continuous improvement in public

involvement.’

Recommendations- Information and communication- Strategic leadership across NIHR- Supporting ‘locally inspired and driven’

public involvement- Development of quality standards with self-

assessment criteria- Learning and development support for

patients and researchers- Diversity and inclusion- Measurement and evaluation