PARTNERS
The NIHR-INCLUDE project was led by the Cluster Office from Newcastle University, on behalf of the NIHR Clinical Research Network. The CRN Cluster is now hosted by the University of Leeds.
our partners
Throughout the project, we engaged with a diverse range of stakeholders across the research lifecycle. This helped us to reach the audiences NIHR-INCLUDE needed to engage with to initiate the step-change in culture required to tackle inclusivity in health and care research.
Stakeholders broadly comprised the following categories:
Charities, public, patients, families and carers
National Institute for Health and Care Research (NIHR) and Clinical Research Network
Life Sciences Industry
Regulatory Bodies
Funders
Practitioners and Health Professionals
Public Health
Image - text description: The image above shows a large circle in the middle, with 6 smaller, connected circles around it. The central circle has the words "INCLUDE Stakeholders" inside it, and the smaller circles have the words "charities, participants, families and carers", "National Institute for Health Research and Clinical Research Network", "Life Sciences Industry", "Regulatory Bodies", "Funders" and "Practitioners and Health Professionals" inside them.
patient and public involvement and engagement (PPIE)
The Importance of Patient and Public Involvement in the NIHR-INCLUDE Project
Professor Lynn Rochester, Project Lead, talks about how important public involvement is to research and how this was particularly important to the NIHR-INCLUDE project which aimed to involve under-served groups in research.
PPIE representation on NIHR-INCLUDE Steering Committee
Throughout the project, PPIE representatives have been on the NIHR-INCLUDE Steering Committee, and these members have enabled a range of diverse public partners to provide strategic input at key stages in INCLUDE's work, such as review of papers and development of recommendations.
Laurie Oliva - National Head of Public Engagement at the National Institute for Health Research (NIHR).
Laurie is responsible for the portfolio of programmes and digital services that support the improvement of experiences of those participating in research and that promote awareness of and equity of access to health research across the whole population. Laurie is on the NIHR’s Public Partnership Board and is the Product Manager for the UK Vaccine Research Registry, a government commissioned digital service to support recruitment to COVID-19 vaccine studies.
Lynne Corner - Director of VOICE, Newcastle University
VOICE was established to harness the immense experience and insights of the public, identify and understand citizen needs and priorities, and work closely with research and businesses to develop evidence-based products and services to support health across the life course. Lynne also leads Patient Involvement for the NIHR Newcastle Biomedical Research Centre and is a member of INVOLVE and is also Director of Engagement within the Faculty of Medical Sciences at Newcastle University.
Gareth Powell - Business Development Officer, National Institute of Health Research (NIHR).
As well as being a member of the INCLUDE steering group, Gareth leads on the delivery of the latest CRN Study Support Service, offering the Patient Engagement in Clinical Development Service. This initiative partners patient groups with the life sciences industry to ensure the patient voice is heard throughout the lifecycle of a trial, ensuring better study delivery for patient benefit.
How we have worked with patients and the public
We established, early on in the project, that inclusivity is context-specific and by nature, highly intersectional. It depends on the population, the condition under study, the question being asked by research teams, and the intervention being tested or the observations being made. No single, simple definition can encompass all under-served groups. For effective engagement with under-served communities we required a more flexible, adaptable and inclusive approach, wider than a single representative on the Steering Committee.
This was made possible through the diverse networks each Steering Group member brought to the table (including representation of wider public and patient groups), wide communication about the project, and, patient and public involvement in workshops, surveys and dissemination events where a broad range of views were represented.
Irene Soulsby, Public and Patient Involvement contributor
"As a cancer survivor of 18 years, I know how important research is. I now take part in research as a 'healthy participant'. I would want everyone to feel that they were included in research, and be included in research. I, along with many others, are really shocked about inequalities and INCLUDE is such an important way to address this. I’m really proud to have been involved with INCLUDE which gives clear guidance on the importance of making research inclusive. I was very pleased to be invited to be part of the team who have designed and developed this. 'Making research inclusive for all'. "
Improving terminology: "under-served"
The development of the term "under-served" was a direct consequence of feedback from under-served communities represented at workshops, events and through surveys,
It was agreed that this term represented a more authentic understanding of what the NIHR-INCLUDE project encompassed and we've worked hard to ensure that ‘under-served’ is adopted as the universally accepted term to describe those typically underrepresented, or overlooked, in clinical research.
Active engagement in survey research & workshops
We have welcomed engagement, feedback and involvement from under-served communities in our active research, including a number of surveys and workshops, to better understand the reality and experiences of under-served communities in regard to health research. Members of the PPIE community have acted as both delegates and speakers in our workshops, and have shared public and patient perspectives to ensure patient voices are heard and are fairly represented. Feedback from these surveys and workshops shaped NIHR-INCLUDE guideline development and training materials.
Continued collaboration with charities and organisations
NIHR-INCLUDE has worked in collaboration with PPIE stakeholders, charities and organisations to engage and include public populations in our work and to keep them abreast of NIHR-INCLUDE developments and events.
The Association of Medical Research Charities (AMRC) are dedicated to helping medical research charities save and improve lives, and have been instrumental in helping us to work with under-served communities through their extensive community of charities, such as The McPin Foundation, MND Association, MS Society, Kidney Research UK, The Cure Parkinson's Trust and Genetic Alliance UK.
We are also proud to have worked alongside VOICE - a unique organisation, comprising a large network of citizens across the UK and internationally. VOICE members contribute immense insights, experience, ideas and vision to identify unmet needs and opportunities, to drive innovation for ageing and improve health research.
Examples of Our Patient and Public Collaborations
Covid and Me: Take part to help the NHS find the solution
During the COVID-19 pandemic, the UK pioneered the development and testing of vaccines and needed to recruit volunteers from communities who typically are under-served in clinical research, to see if the vaccines offered protection, with the intention to help bring the pandemic under control.
The National Institute for Health Research (NIHR) commissioned a series of dramatic monologues aimed to encourage people from under-served communities to take part in medical research.
Multiverse Lab
We are working with Newcastle University and Unfolding Theatre to make Multiverse Lab - a new style of community consultation that seeks to break down the barriers the public and patients face in engaging with health research, via a touring community roadshow. It will use tested, innovative and creative approaches to engage people who would not usually get the chance to know about, let alone influence, research.
The initiative will work to:
Better understand public priorities on health and ageing
Engage the most seldom heard from members of public and patients in health research