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The page has a summary of our strategy for involving people in our research - sometimes this is referred to as Patient and Public Involvement and Engagement

We have created a separate page with a detailed version of our strategy which can be used by screen readers, and there is also a glossary on another page to explain some of the language used in the documents. (it might be useful to have this open in another TAB on your browser for reference)

If there is something not quite right then email us at arcwessex@soton.ac.uk for help or any comments

Involving the Public in our Research

Patients and the public are at the heart of our vision to improve the health and well-being of people across Wessex[i]. The knowledge, experiences and support of patients and the public are essential to ensure that our research goals and solutions are relevant, prevent waste, and bring the greatest possible benefits to society.
We use the terms involvement[ii] and engagement[iii] to describe activities that aim to prioritise the public voice in our health and social care research. We aim to deliver high quality public involvement and engagement for health and social care.
This document summarises our ambitions and gives a few examples of activities we will deliver in our first year (April 2021-March 2022).

We listen to voices relevant to our research priorities that reflect the diversity of the local population – ensuring the underserved[iv] have a voice.

This year we will:

·      Work with the leads of each project starting in 2021 to identify who is underserved in the context of each project. We will prioritise the voices of these underserved groups in our involvement activities.

·      Publish guidance documents on how to improve virtual meeting accessibility.

Inclusive Opportunities

Logo representing inclusiveness

We have a culture that respects different perspectives, values contributions and supports mutually respectful and productive relationships.

This year we will:

·      Work with our public members to develop and trial approaches to blending face-to-face and virtual activities as we adapt to changing social distancing restrictions.

·      Develop induction materials that outline the support structures available in ARC Wessex for involvement and engagement activities.

Working Together

Logo representing working together

We capture, monitor and share our learnings.

This year we will:

·      Adapt an involvement impact tool so we can use it to monitor the impact of our activities.

Impact

Logo representing impact

We provide health research communities of Wessex (including public) adequate PPI/E training, support and learning opportunities.

This year we will:

·      Develop a course supporting the public with their confidence contributing to virtual meetings.

·      Evaluate a pilot mentorship scheme, where we paired new PhD students with a public partner to provide mentorship in involvement and engagement.

●      Deliver a training course focused on skills for public involvement to our researchers. 

Support and Learning

Logo representing support and learning

We use innovative approaches and good communication to stimulate knowledge-of, and interest-in, our research.

This year we will:

·      Collect a baseline measurement (ie starting position) of how well feedback processes are embedded in our involvement and engagement activities. This will include understanding how regularly public members are told what difference their contributions have made to research.

Communications

Logo representing communication

We involve the public at strategic and operational levels.

This year we will:

●      Involve the public in decisions about which projects we will fund this year.

●      Collect feedback from our public members who have strategic positions to understand if they feel heard and included in decision-making. 

Governance

Logo to represent governance

Want to know more? You can read our full strategy - or download a version as a file.

Have questions or comments? Email PublicInvolvement@uhs.nhs.uk  

[i] Wessex includes Dorset, Hampshire, the Isle of Wight and South Wiltshire.

[ii] Public involvement activities describe activities where research is carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.

[iii] Engagement activities describe activities where information and knowledge about research is provided to and shared with the public.

[iv] Underserved is the term we have chosen to use to describe people who are less well included in research. It is important to recognise that underserved groups are context-specific. There is no single, simple definition to describe all underserved groups.

Glossary of Terms

Here you will find some of the terms or phrases used in the document and what they mean

Link to an explanation of some of the words used in this document in LARGER PRINT

Accessibility

Accessibility is about making sure that things can be accessed and used by as many people as possible. This includes people with impaired vision, motor difficulties, cognitive impairments, learning disabilities and deafness or impaired hearing.

ARC-funded or ARC-supported studies

ARC-funded studies receive financial funding directly from ARC Wessex. Other studies are ‘ARC-supported’ – these studies do not receive any direct financial support from ARC but do receive other support, such as ARC staff providing support to the study.

ARC or Applied Research Collaboration

ARCs support applied health and care research that responds to, and meets, the needs of local populations and local health and care systems. They are funded by the NIHR. There are 15 funded across England.

ARC Partnership Board

This is a decision-making body for ARC Wessex. It meets quarterly to set priorities and directly contribute to, support delivery and monitor performance of our programme. The board membership has two public representatives.

BRC or Biomedical Research Centre

BRCs bring together academics and clinicians to translate lab-based scientific breakthroughs into potential new treatments, diagnostics and medical technologies. There are 20 NIHR funded BRCs in England. The ARC Lead for PPI/E also leads PPI/E for the Southampton BRC. Our researchers also work closely with staff in the BRC.

CCF or Clinical Commissioning Facility

They manage and administer the ARC funding scheme. We report to them annually and will have to report our progress against this strategy.

CLAHRC or Collaborations for Leadership in Applied Health Research and Care

This is the term for the organisations which preceded the ARCs. They were also funded by the NIHR and had a similar function. This funding scheme closed in Sept 2019 when the ARC scheme succeeded them.

Communications and Partnership Manager

This role has responsibility for shaping and delivering our communications, and supporting productive relationships across our partners. At the time of publishing, Jamie Stevenson fills this post.

CRF or Clinical Research Facility

CRFs are purpose built facilities in NHS hospitals where researchers can deliver early-phase and complex studies. There are 22 NIHR funded CRFs in England. The ARC Lead for PPI/E also leads PPI/E for the Southampton CRF.

Engagement

Where information and knowledge is provided and shared with the public.

Equality impact assessments

The equality impact assessment is a systematic and evidence-based tool, which enables us to consider the likely impact of work on different groups of people. They help ensure that activities do not discriminate against anyone and that, where possible, we promote equality of opportunity.

Executive Leadership Group

This group operationalises strategy, policy and the research programme. The group is led by the ARC Director; the Lead for PPI/E and Communications and the Partnership Manager are members.

Higher Education Institutes

This term describes any institution that provides education post-secondary education level, for example Universities.

INCLUDE guidance

This guidance provides a suggested framework of questions to guide the deliberations of funders, researchers and delivery teams as they design and assess clinical research proposals to improve inclusion of under-served groups in clinical research. Read more.

INVOLVE

INVOLVE was a national coordinating centre for public involvement in health and care. It was funded by the National Institute for Health Research between 1996-2020. A new Centre for Engagement and Dissemination aims to build on the work of INVOLVE.

Lead for PPI/E

This role has responsibility for shaping and delivering our PPI/E strategy. They also lead PPI/E for other NIHR organisations. At the time of publishing, Caroline Barker fills this post.

Lifelab

A unique, state-of-the-art teaching laboratory dedicated to improving adolescent health by giving school students opportunities to learn first-hand the science behind the health messages.

Logic modelling and theory of change

A theory of change is a description of why a particular way of working will be effective, showing how change happens in the short, medium and long term to achieve its intended impact. Logic models are a way to graphically represent this theory. Our Lead for PPI/E supervises a PhD student who has developed a PPI/E planning and impact tool, underpinned by the theory of change and a logic model. We aim to use this to capture impacts of the ARC PPI/E programme.

Microsoft Accessibility Checker

A free tool available in Office 365. It finds most accessibility issues and explains why each might be a potential problem for someone with a disability. It also offers suggestions on how to resolve each issue. Read more.

NHS providers

This term describes any organisation that provides NHS services. This includes hospitals, community trusts, GP services, pharmacies and clinical commissioning groups.

NIHR or National Institute for Health Research

The National Institute for Health Research is funded by the Department of Health and Social Care. It funds health and care research, providing the people, facilities and technology for research to thrive.

Patient and public involvement

Research carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. Members of the public can be involved at all stages of a research project and across all levels of research organisations.

PPI Champions

Our PPI Champions are members of the public. They have a strategic role in our organisation. This includes working closely with the leadership of one of our research themes and with our PPI/E team. We try to have two PPI Champions per research theme.

PPI Officer

Our PPI Officer is a member of staff dedicated to supporting good PPI/E. At the time of publishing, Katherine Baker fills this post.

PPI/E

An acronym for patient and public involvement and engagement. Used to describe work and projects which connect or encompass both activities.

Population risk stratification and intervention to prevent childhood obesity

This project aims to test the feasibility and acceptability of a childhood obesity prediction tool and online platform for health visitors to use when supporting families to lead healthier life styles. The involvement work will focus on working with the underserved, such as those from deprived or ethnic minority groups, who are most at risk of childhood obesity.

Public Engagement in Research Unit

This unit exists to inspire and support high quality public engagement with research across all disciplines at the University of Southampton.

Public Policy Unit

This unit, at the University of Southampton, helps researchers connect with policymakers to better support evidence-based policymaking.

Socioeconomic status

This term describes an individual's or family's economic and social position. It is a predictor of outcomes across the life span.

Staff links

Each theme has a nominated PPI/E staff link. This is a member of their research team. They are members of our strategic PPI/E group, WISeRD.

Sure Start

Sure Start is a government area-based initiative that was founded with the aim of 'giving children the best possible start in life' through improvement of childcare, early education, health and family support.

Training Needs Analysis

This is a process to determine all the training that needs to be completed (and when) to allow someone to complete their job as effectively as possible, as well as progress and grow.

UK Standards for Public Involvement

The standards are a framework for what good public involvement in research looks like. They provide clear, concise statements of effective public involvement against which improvement can be assessed. They were developed as a partnership of organisations across the UK, including the NIHR. Read more.

Underserved

Underserved is the term we have chosen to use to describe people who are less well included in research. We prefer this term because it highlights that the research community needs to provide a better service for these individuals. It is important to recognise that underserved groups are context-specific. There is no single, simple definition to describe all underserved groups. The INCLUDE guidance provides more information about what an underserved group is – read here.

Wessex

Wessex is the region covering Dorset, Hampshire, the Isle of Wight and South Wiltshire.

Wessex PIN or Wessex Public Involvement Network

A network of staff and public working within NIHR all committed to improving public involvement in research. We share our knowledge and support and develop each other. We work together on a number of priority projects that wouldn’t be possible if we didn’t share the workload between us. Read more.

WISeRD or Wessex Inclusion in Service Research and Design Group

WISeRD is our strategic PPI/E group. Its membership includes our PPI Champions, staff links and PPI/E staff.

 

 

Download the full strategy document (as above)

As a Word Document

External web link - https://www.arc-wx.nihr.ac.uk/media/1514/20210330-arc-ppie-strategy.docx