Breaking Boundaries#INVOLVE 2014, Birmingham

Simon DenegriChair, INVOLVENIHR National Director for Public Participation and Engagement in Research

‘Coming together is a beginning, staying together is progress, and working together is

success.’

Henry Ford

Improving health by doing research a better way

A joint venture

Improving health is our first concern

Knowledge is valued

Partnership is equal

What you 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 collaborationto future success

• The need to recognise and share good practice.

Your 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 consistentimplementation

• Clarity over quality and good practice in public involvement

• Agreed measures for how public involvement is making a difference

• Global partnership and better links with the NHS and other funders.

‘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.’

‘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.’

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

‘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…..’

Keeping it simple

‘………..it gets complicated, confusing and messy. People need to know what is out there, how they can get involved and why it's happening. The acronyms, that then need to be spelt out and explained along with the many avenues an opportunity comes from, suddenly gets too difficult to

decipher unless you’re an academic or a clinician.’

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.’

Quality

‘What is required now is a national framework which sets minimum standards for PPI quality,

against which funding and ethical approval decision making can be made.’

Measuring success

Reach RelevanceRefinement

Topics for discussion #INVOLVE 2014

What would need to be in place locally and regionally for you to work collaboratively to deliver NIHR’s strategic goals for public involvement?

What should be our top three priorities to ensure success?

QuestionsSimon.Denegri@nihr.ac.uk

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

Thank you to the review panel and CLAHRC NWL