NIHR Central Commissioning Facility: Patient and Public Involvement and Engagement Plan 2018/19
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NIHR Central Commissioning Facility:
Patient and Public Involvement and Engagement Plan 2018/19
Contents
1. Background 1
2. Purpose 2
3. Terminology 3
4. Working together 4
5. Diversity in our work 5
6. Resources and capacity 5
7. Accountability 6
8. Action plan 2018/19 7
9. Further information 12
Page 1 of 12
1. Background
The National Institute for Health Research (NIHR) works to improve the health and wealth of
the nation through research and is committed to involving patients and the public at every
step. In 2017, five national priorities for involvement and engagement in research were
identified as the focus for NIHR-wide delivery over the next 12 to 18 months. This plan
reflects those national priorities and they are:
Voice To ensure patients, carers and the public have
a voice in how the NIHR works
Feedback To ensure patients, carers and the public get
feedback on how they have made a difference
Standards To define what good public involvement and
engagement looks like
Impact / To understand and show the impact of public
Getting results involvement and engagement
Invention To test new ideas in public involvement and
engagement and share the learning
You can access more information about the priorities here.
2. Purpose
Public contributors bring a wealth of knowledge and insights to research based on their
personal experiences as users of health and social care services and treatments. Our
purpose in working with patients, carers and the public is to improve the quality and
relevance of the research that we commission and other research activities that we
manage and to raise public awareness of research.
If you are unfamiliar with the NIHR Central Commissioning Facility (CCF) you can read more
about how we work with public contributors and also about the scale and scope of the work
that the CCF manages for the NIHR. Figure 1 below briefly summarises some of the ways
that public contributors were involved in our work during 2016/17.
Page 2 of 12
Figure 1: Examples of how public contributors worked with CCF in 2016/17
3. Terminology
There are a few terms used in this document which can be defined in different ways. For
clarity, we use the terms as defined by INVOLVE:
‘Patient and public involvement in research’ or ‘PPI’ or ‘Involvement’
Research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’
them.
‘Public engagement’ or ‘Engagement’
Where information and knowledge about research is provided and disseminated to the
public.
‘Research participation’ or ‘Participation’
Where people take part in a research study.
‘Public contributors’
A general term we use to describe patients, carers and members of the public involved
in our work:
● as public reviewers of research applications and/or
● as public members of our research programme decision-making panels and/or
● in other activities such as developing guidance and sitting on interview panels.
Page 3 of 124. Working together
We routinely involve public contributors in our work including in the development and
delivery of this plan. You can read more about how we work with public contributors and the
difference it has made in ‘The public as our partners’ report.
We view working in partnership and collaboration across the NIHR and beyond as essential
to ensure that we:
● target and use available resources efficiently
● coordinate and share effective practice, knowledge and skills
● avoid unnecessary duplication
● demonstrate the difference that working with public contributors makes.
We actively seek to work with a wide range of organisations, groups and individuals, such as
NHS England, research charities, research funders, Higher Education Institutions, Research
Councils, industry and others. One example of this (see Fig. 2 below) is a project to develop
national standards for involvement working in partnership with public contributors, Health
and Care Research Wales, the Chief Scientist Office in Scotland and the Public Health
Agency in Northern Ireland.
Figure 2: National standards for public involvement in research
We work closely with many different parts of the NIHR to support and promote involvement
and engagement in research locally, nationally and internationally. These include:
● NIHR National Director for Patients, Carers and the Public
● NIHR PPI Senior Leadership Team1
● INVOLVE
● NIHR Evaluation, Trials and Studies Coordinating Centre (NETSCC)
● NIHR Trainees Coordinating Centre (TCC)
● NIHR Clinical Research Network Coordinating Centre (CRN CC)
1
The NIHR PPI Senior Leadership Team provides strategic leadership for involvement and engagement across
the NIHR and supports delivery of the Going the Extra Mile report’s recommendations.
Page 4 of 12We have particularly close ties with NETSCC because we both involve public contributors in
research programmes. Our teams regularly meet and work toward a similar approach for
involvement and engagement.
5. Diversity in our work
We are committed to working with and involving a diverse and inclusive community of public
contributors in the research we fund. It’s important that the people, communities and groups
potentially affected by NIHR research are part of the processes by which the research is
assessed, prioritised and funded. When we talk about diversity and inclusion, we refer to the
INVOLVE definitions2.
We value the breadth of perspective and experience offered by our community of public
contributors, however, we are aware that we are not reaching all of the groups potentially
affected by the research we fund. Our understanding of this is underpinned by two projects
we carried out in 2016/17. One that looked at the range of patient and/or carer experiences
offered by our community of public contributors. Another that explored the diversity
(‘protected characteristics’ such as age, gender and ethnicity) of our community of public
contributors.
The analysis of lived experience as a patient and/or carer revealed that whilst we work with a
relatively small community of contributors they offered a wealth of relevant lived experience.
The analysis of the ‘protected characteristics’ of reviewers, on the other hand, indicated that
we involved relatively few people under the age 40 and relatively few people from ethnic
minorities. In the first instance, we are focusing on how we can involve more young people
and this work will continue in 2018/19, as outlined in our Action Plan below (Project 1.1C).
6. Resources and capacity
The projects and activities in our action plan (see section 8) are ambitious. Delivering
previous plans has taught us that in a rapidly changing environment we need to build in
some flexibility to respond to unexpected opportunities and newly emerging priorities, such
as the current review of the NIHR strategy and the Future of Health report.
Our main focus is on delivering and improving our core activities, such as recruiting and
supporting a large number of public contributors to provide reviews of research funding
applications. We allocate the rest of our capacity and resources to development projects that
2
Diversity means understanding that each individual is unique, respecting and valuing all forms of difference.
People vary in all sorts of ways which may not always be obvious or visible. These differences might include
race, ethnicity, culture, belief, gender, sexuality, age and social status, ability and use of health and social care
services.
Inclusion is about taking deliberate action to meet the needs of different people and to promote environments
where everyone feels respected, valued for who they are and able to achieve their full potential.
To find out more about INVOLVE’s work on diversity and inclusion, please visit:
http://www.invo.org.uk/current-work/diversity-and-inclusion/.
Page 5 of 12are part of an NIHR-wide approach to delivering our shared five strategic priorities such as
developing and piloting national standards for involvement.
At CCF involvement is everyone’s business. We plan, deliver, monitor and review capacity
development for both staff and public contributors through delivering the CCF Policy:
Learning and support for PPI. All staff are expected to have, or to acquire, a depth of
knowledge and understanding of involvement that is relevant to their role. We have a
dedicated PPI team tasked with developing and delivering this plan. For staff who have
specific responsibilities for PPI in their own teams there is a PPI Working Group (see 3.1 in
the action plan). CCF’s public contributors are critical to our success. In addition to the
different insights and perspectives on research that they bring, they also offer a wealth of
other knowledge and skills that make them valuable collaborators and critical friends. We will
involve public contributors in developing and delivering all projects in the plan.
7. Accountability
Our plan is grounded in a process of continuous improvement (see Fig. 3 below). It builds on
an established annual planning and reporting cycle that includes the involvement of NIHR
public contributors.
Figure 3: Annual development, delivery, self-assessment and reporting cycle
CCF submits all its involvement and engagement plans and annual reports to the
Department of Health and Social Care and makes them publicly available on the NIHR
website. The Director of Involvement and Engagement is accountable for delivery of this
plan and provides regular progress reports to CCF’s Senior Management Team and the
National Director for Patients, Carers and the Public. The PPI team is responsible for
day-to-day management and delivery of the action plan.
Page 6 of 128. Action plan 2018/19
All our activities and projects focus on delivering the NIHR’s five national, strategic priorities
for involvement and engagement:
Strategic priority: Voice
To ensure patients, carers and the public have a voice in how the NIHR
works
1.1 Public reviewers: We will recruit and support public contributors with diverse
knowledge and experience as patients and/or carers to review funding applications for the
funding competitions and research programmes that CCF manages. In 2017/18, we had a
focus on involving young people (15-25 year olds) in these activities and this will continue
in 2018/19.
Outcomes and outputs:
A During 2018/19, we will provide a public review for each Stage 2 funding application to
the research programmes managed by the CCF. In 2016/17 this was a total of 265
reviews.
B By October 2018, we will evaluate a new system for public contributors wishing to sign
up as a reviewer. The new system streamlines and simplifies the registration process
through a single entry point on the NIHR website.
C During 2017/18, we are piloting a project with the Centre for Public Engagement at
Kingston and St George’s University with the aim of recruiting 20 or more young adults to
get involved as public reviewers. If the project is successful, we will repeat the process in
2018/19 with the same or another partner organisation.
1.2 Public panel members: We will recruit and support public contributors with diverse
knowledge and experience to sit on advisory panels for the funding competitions and
research programmes that CCF manages.
We will continue to work with our colleagues at the NIHR Evaluation, Trials and Studies
Coordinating Centre (NETSCC) on streamlining our processes. Part of this work focuses
on developing a joint approach to recruiting public panel members to funding panels.
Outcomes and outputs:
A By December 2018, we will recruit and support the induction of 15 public contributors as
standing members of research programmes’ funding panels.
B By January 2019, we will review and evaluate the recruitment process. This will include:
(1) seeking feedback to identify areas that work well and those that need improving
(2) assessing whether the newly developed application form has worked
(3) assessing whether we have managed to recruit and support young people.
Page 7 of 12C During 2018/19, we will recruit, support and review the involvement of public
contributors for at least six competitions (Academic Health Science Centres, Nominations
to the Advisory Committee on Clinical Excellence Awards, Senior Investigators’,
Collaborations for Leadership and Applied Health Research and Care, School of Social
Care Research and Global Health funding calls).
Strategic priority: Feedback
To ensure patients, carers and the public get feedback on how they have
made a difference
2.1 Feedback to public reviewers: We routinely provide constructive feedback to public
reviewers on the reviews they submit as part of the support we offer to them. We will
continue to provide feedback, especially to new reviewers.
Outcomes and outputs:
A By December 2018, we will conduct telephone interviews with a group of new and
existing public reviewers and ask them about the quality of support and feedback that we
provide.
2.2 Learning and support workshops: Part of the support we provide for programme
teams, the Chairs of programmes and public panel members is to bring them together for
a workshop every two to three years. The workshops provide an opportunity for feedback
to public panel members and discussion of issues relevant to their role, the research
programme and the wider NIHR.
Outcomes and outputs:
A By December 2018, delivery of three workshops (one for Programme Grants for Applied
Research, two for the Policy Research Programme). We will work with participants to plan
the workshops and then seek feedback from them on meeting the aims of the workshops.
2.3 Evaluation of new NIHR Standard Application Form (SAF): With the introduction of
the new NIHR SAF, public panel members of research programmes are being asked to
give feedback on the impact of the changes regarding the PPI described in applications.
We will continue working with our colleagues at the NIHR Evaluation, Trials and Studies
Coordinating Centre (NETSCC), research programmes and an NIHR-wide Review Group
to implement changes and support public panel members.
Outcomes and outputs:
A By April 2019, we will support and work with:
● research programmes to seek feedback from public panel members about the new
SAF using online surveys
● the office of the NIHR National Director for Patients, Carers and the Public to
coordinate quarterly teleconferences and/or meetings with public contributors, the
Page 8 of 12group tasked with analysing and writing of quarterly reports using the survey data.
In the second half of 2019 we will provide feedback on what changes, if any, were made to
the new forms as a result of the evaluation.
Strategic Priority: Standards
To define what good public involvement and engagement looks like
3.1 CCF PPI Working Group: We will continue to support the development and
coordination of PPI through facilitating a CCF PPI Working Group. Every six to eight
weeks, bringing together all colleagues who are nominated to lead on involvement for their
team (research programmes, infrastructure, communications, business support) to
address issues of common interest, avoid unnecessary duplication of effort, exchange
ideas, develop skills and share examples of good practice.
Outcomes and outputs:
A By May 2018, we will update CCF’s payment guide so as to reflect structural changes in
the programmes (for example RfPB now has a two-stage commissioning process).
B Throughout 2018/19, PPI Working Group members will identify examples of good
practice. We will promote and share these examples in different ways such as through
social media, blogs and inviting research teams to present to CCF staff as a learning and
development opportunity through lunchtime talks (see 5.1).
3.2 Standards: We will continue work to develop a set of UK standards for public
involvement as part of a Development Partnership with INVOLVE and colleagues in
Northern Ireland, Scotland and Wales. In 2018/19 we will test out the standards in practice
before rolling them out more widely across the NIHR.
Outcomes and outputs:
A By June 2018, we will identify and bring together a maximum of 10 groups and
organisations that will work with the Partnership to pilot the standards during 2018/19.
B By April 2019, we will use surveys to learn what difference (positive and negative) the
standards are making to the work of pilot groups and organisations. We will share and use
key learning points to improve the standards and develop resources.
Page 9 of 12Strategic priority: Impact/Getting results
To understand and show the impact of public involvement and engagement
4.1 Monitoring and feedback: We will monitor and provide feedback to the NIHR centres,
units, facilities and schools managed by the CCF, on their progress in developing and
delivering their strategic plans for involvement, engagement and participation.
Outcomes and outputs:
A By August 2018, we will work with public contributors to review and provide feedback on
approximately 50 involvement and engagement strategies and action plans for newly
funded NIHR centres, units, schools and facilities.
B By January 2019, we will:
● review and provide feedback on the involvement and engagement sections of
annual progress reports from over 100 NIHR centres, units, facilities and schools.
● compile and publish the involvement and engagement sections of annual progress
reports as a method of highlighting and sharing effective practice and challenges.
C By April 2019, we will work with the Research Design Service to pilot and review using
the national standards for public involvement in research as a framework for annual
progress reporting.
D During 2018/19, we will take part in workshops and events organised by other
colleagues across the NIHR to develop their involvement and engagement strategies and
action plans. We expect this to include MedTech and In Vitro Diagnostic Centres (MICs),
the Research Design Service (RDS), Biomedical Research Centres (BRCs) and Blood and
Transplant Research Units (BTRUs).
4.2 Planning and reporting: We will publish an annual report to summarise our progress
in delivering this plan. This forms part of our annual planning and reporting cycle and will
include a process of review, reflection and consultation to develop our Patient and Public
Involvement and Engagement Plan for 2019/20.
Outcomes and outputs:
A By August 2018, we will pilot using the national standards for public involvement in
research as a framework for our 2017/18 Patient and Public Involvement and Engagement
report and make the report publicly available on the NIHR website.
B By February 2019, we will consult on the next phase of our work and draft our 2019/20
Patient and Public Involvement and Engagement Plan.
Page 10 of 124.3 Impact: We will continue to work with the CCF Impact Team and the NIHR Public
Involvement and Engagement Senior Leadership Team to develop an NIHR-wide
approach and a programme of activities focussed on assessing the impact of involvement
in research. This will include taking forward actions from an international Impact Exchange
Workshop with colleagues from Australia, Canada, Northern Ireland, USA and the UK.
Outcomes and outputs:
A By June 2018, we will work with INVOLVE and participate in a meeting of the
International Involvement and Engagement Network to take forward actions from the
Impact Exchange Workshop.
B By December 2018, we will work with the NIHR National Director of Patients, Carers
and the Public as a member of the NIHR Working Group on the Impact of Public
Involvement and Engagement in Research to develop a cohesive agenda and a
programme of activities focussed on understanding and assessing the impact of
involvement in research.
4.4 Communication: Working with our Communications team, we will support delivery of
the NIHR Communications Strategy and the N
IHR Digital Strategy. We will use social
media and other communication channels to promote the value and impact of involvement
and engagement in NIHR research as widely as possible.
Outcomes and outputs:
A During 2018/19, we will continue to develop a part of the NIHR website to support
sharing information and engagement with the public and NIHR colleagues about the work
of the National Director and the NIHR Public Involvement and Engagement Senior
Leadership Team.
B During 2018/19, we will continue to use social media and other communication channels
to reach as wide an audience as possible to share information and insight about
involvement and engagement activities across the NIHR. This will include developing a
short video for the standards project (see 3.2 above). We will also support the I am
research campaign and activities to celebrate 70 years of the NHS.
C During 2018/19, both Invention for Innovation and Programme Grants are planning to
produce a review of their programmes and we will support them to develop and produce
PPI content.
Page 11 of 12Strategic priority: Invention
To test new ideas in public involvement and engagement and share the
learning
Two of our projects in this plan are new and address this strategic priority;
● testing national standards (project 3.2),
● piloting the standards as a framework for annual reporting across the NIHR (project
4.1 C) and for annual reporting by CCF (project 4.2 A).
The following two projects also belong to this category as being new ideas:
5.1 CCF Talks: We will organise a series of lunchtime talks about involvement focussing
on topics identified by CCF staff. We will invite guest speakers, including researchers and
public contributors, to talk about their experiences. The talks will also be open to CCF
public contributors and colleagues in other parts of the NIHR.
Outcomes and outputs:
A By April 2019, we will run four lunchtime talks for CCF staff and offer the opportunity to
other colleagues across and beyond the NIHR to attend. We will monitor the number of
attendees and seek feedback from the audience. We will make the slides of the talks
available more widely via social media.
5.2 Research priority areas: Working with CCF-managed programmes and as part of a
wider process of reviewing NIHR research programmes, we will explore opportunities to
stimulate greater pull through from research priorities identified by the James Lind Alliance
(JLA) Priority Setting Partnerships into funded research projects.
Outcomes and outputs:
A By December 2018, we will contribute to the review including making recommendations
for next steps.
9. Further information
Please contact CCF’s PPI team if you would like to know more about this plan, if you are
interested in helping us to deliver it or if you would like a paper copy of this or any of the
other documents and reports that we have mentioned.
Email: ccfppi@nihr.ac.uk
Telephone: 020 8843 8041
Address: NIHR Central Commissioning Facility
Grange House, 15 Church Street, Twickenham, TW1 3NL
Visit the ‘Patient and Public’ section of the NIHR website for more information. INVOLVE
provides extensive resources and support for PPI in research.
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