Update on NIHR Review of Public Involvement

INVOLVE Group Meeting, 21st January 2015

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

INVOLVE (UK)

Terms of reference

• A strategic review to examine future options in building an active collaboration with the public and making best use of their skills, knowledge and experience.

• Aims to set the direction, tone and style of public involvement across the NIHR over the next 10 years.

Five areas of inquiry

1. Overall evaluation of progress to date

2. Barriers to public involvement

3. How to do things differently

4. Future design and delivery

5. What will success look like

Review response

1. Online survey > 500 responses from patients, researchers, research staff

2. Written submissions > 80 from organisations and institutions

3. Collaborative responses by function, region or institution

4. Oral evidence sessions with intl guests, charities and industry

5. Local discussions as part of regional PPI meetings

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 collaborationto 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 consistentimplementation

• 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.’

Report sets out a vision, mission and strategic goals and embraces the principles of co-production

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 simple 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.’

Recommendations on information and communication, a single access point for the public, incentivising innovative ways forward

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…..’

Recommendations for a new NIHR ‘leadership group’ for PPI, NIHR-wide PPI forum etc., reporting and monitoring, prioritising of strategic issues such as diversity and inclusion

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.’

Recommendation on quality agenda (above) and promoting a learning and development culture

Measuring success

Reach

Relevance

Refinement

Implementation

Three phases:

• Brief period to hear back from people and to respond

• Putting in place the new structures and groups (INVOLVE contract included!)

• ‘Line of sight’ exercise with local and regional colleagues over 2015/2016

QuestionsSimon.Denegri@nihr.ac.uk

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

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