I@Y Booklet

REGISTER

CONTENTS

PAGE • Message from the University Vice Chancellor....................... 02 • Involvement@York and Public Involvement in Research.... 04 • How We Work and What We Do............................................. 07 • Our Values.................................................................................. 09 • The Involvement@York Register............................................ 11 • Joining the Involvement@York Register............................... 13 • Celebrating Involvement@York Register Members............. 14 • Leaving the Involvement@York Register.............................. 15 • Payment for Public Involvement in Research........................ 16 • Ethical Practice and Safeguarding........................................... 18 • Contact Us.................................................................................. 19

MESSAGE from Professor Charlie Jeffery Vice Chancellor of the University of York Lorem ipsum dolor sit amet, consectetuer adipiscing elit, sed diam nonummy nibh euismod tincidunt ut laoreet dolore magna aliquam erat volutpat. Ut wisi enim ad minim veniam, quis nostrud exerci tation ullamcorper suscipit lobortis nisl ut aliquip ex ea commodo consequat. Duis autem vel eum iriure dolor in hendrerit in vulputate velit esse molestie consequat, vel illum dolore eu feugiat nulla facilisis at vero eros et accumsan et iusto odio dignissim qui blandit praesent luptatum zzril delenit augue duis dolore te feugait nulla facilisi.

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The range of opportunities since I joined Involvment@York has been really interesting and made me want to get more involved and more in depth.

Involvement@York Register Member 3

Involvement@York

&

Public Involvement in Research

We are a team at the heart of the University who champion public involvement in research and wider participatory approaches to research.

WE WANT TO MAKE IT EASIER

for researchers and members of the public to work together, and...

WE DO THIS BY

connecting researchers with members of the public...

TO IMPROVE

the reach, relevance, quality and impact of our research.

We also want to transform the University's research culture to make research and the research process more open and accessible to members of the public.

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We believe in public involvement in research because:

When we talk about public involvement in research, we mean:

When we talk about public involvement in research, we do not mean: 5

•

It can improve the relevance and usefulness of research.

•

It can increase the likelihood that research findings will result in real world changes.

•

It can enhance the transparency and accountability of the research process.

•

It can also promote public understanding and increase public trust in research.

•

All the ways in which the research community works together with people and communities.

•

All the ways in which research is carried out with or by members of the public, not to, about or for them.

We use the term ‘public contributor to research’ to describe anyone who works in partnership with researchers in this way.

•

The ways in which people take part in a research study as research participants (e.g. being recruited to a study trial to test a new treatment or intervention, or being invited to complete questionnaires or participate in a focus group as part of a research study).

•

The ways in which information and knowledge about research is communicated and disseminated publicly (e.g. through the media, at science festivals, or to research participants at the end of a study).

I'm motivated by the thought that in some very small way, my thoughts and experience may be helpful in ongoing or future research.

Involvement@York Register Member 6

How We Work What We Do

&

We work hard to support and champion public involvement and participatory research across the whole of the University.

Here are some of the ways we do that:

We help members of the public to: • • •

Understand how they can meaningfully contribute to research.

Navigate their interactions with researchers and the needs of different research projects.

Access research involvement opportunities.

We help researchers and research support staff to: • • • •

Plan, budget for and carry out meaningful public involvement and participatory research.

Consider the most equitable way to involve the public in research.

Find public contributors to collaborate with.

Access training opportunities.

We help everyone by: • • •

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Providing independent advice and support.

Promoting and developing new policies and processes that make it easier for the public and researchers to work together.

Celebrating the impact and benefits of public involvement and participatory research for all involved.

There are lots of ways for you to get involved in University of York research: • Help develop research priorities and questions.

• Feedback on materials researchers have developed.

• Serve as a member of an advisory or steering group.

• Participate in co-design workshops.

• Disseminate research findings.

• Help write research articles.

Involvement@York

is here to help and support you to do this!

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Our Values We are COMPASSIONATE

•

•

We are

INCLUSIVE

• •

We are

We are

TRANSPARENT

INNOVATIVE

• •

• •

We are COLLABORATIVE

• •

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We care about our public contributors.

Sharing your experience is powerful but sometimes it can be hard. We are here to support you.

We want public contributors, as well as the research we support to have the best chance at inspiring positive change.

We respect and value public contributors’ different backgrounds, ideas, and viewpoints.

We make space for everybody. We will meet you where you are and support you throughout your public involvement journey.

We build relationships based on trust, honesty, and mutual respect.

We understand that power imbalances and hierarchies can be harmful and will address those directly where we can.

We are bold in our thinking and work hard to make public involvement in research more widespread.

We challenge ourselves and our researchers to find new and better ways of working.

We bring researchers and public contributors together to accomplish incredible things.

We aim to make involvement as accessible as possible, so everyone who wants to, can take part.

Contributing to research gives me the chance to promote and champion issues that are important to me personally.

Involvement@York Register Member 10

REGISTER The Involvement@York Register is an active record of members of the public who are interested in working with researchers at the University of York.

We created the Register to make it easier: • For researchers at the University to find members of the public to work with.

• For members of the public to stay in touch with the University of York, and to be made aware of research involvement opportunities on an ongoing basis.

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The Register has grown and now helps us to:

•

Support high quality public involvement in University of York research.

•

Share opportunities with an active community of public contributors to get involved in different research projects and research-related activity.

•

Build relationships between researchers and members of the public that are underpinned by trust and ambitions to work together to share power, resources, knowledge and decision making.

•

Champion and celebrate public contributors to research, as well as the impact of meaningful public involvement in research and participatory research in all their forms.

We have an ever growing number of public contributors on the Involvement@York Register.

They are involved in various different research projects and activities, using their lived experience to make a positive contribution to University of York research.

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How to Join We want to make joining our Involvement@York Register as easy as possible. Simply write to us or email us to let us know you’d like to join and we’ll add your details to our register database.

When you express an interest in joining the Register, we will send you: • • •

A copy of this Welcome Booklet.

A copy of our Involvement@York Privacy Notice.

A copy of the University of York Payment Policy for Research Involvement and Research Participation.

What it means to be an Involvement@York Register Member We will share opportunities to get involved in research at the University of York.

We asked our current Register members how they would like us to communicate with them, and they told us they prefer: An email to Register members on a Friday, once or twice a month.

The email you receive will detail upcoming research involvement opportunities, events or other news that we think you might be interested in.

It may also include requests to help us improve Involvement@York and our ways of working. For example, reviewing our web pages or the development of new University policies and processes to support public involvement in research and/or wider participatory approaches to research.

We might need to contact you at other times too, but this will not happen very often.

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Celebrating Involvement@York Register Members We are passionate about championing and celebrating the fantastic contribution public contributors make to research across the University of York.

We especially value and appreciate our Register members for gifting us and our researchers the wisdom of their lived experience.

We want to acknowledge that and will sometimes invite you to celebration events in order to say thank you.

We might occasionally ask you why you get involved in research and what being a public contributor means to you.

We think it is important to capture this feedback and share it with researchers and University leaders because it helps us to: •

Raise awareness of public involvement in research and show our colleagues how integral you are to our research community.

•

Promote and champion the wider importance and added value of public involvement in research and participatory approaches to research for everyone involved.

We also think it is important to share this feedback with the wider public to encourage others to become public contributors too.

We hope you might be open to sharing those personal insights with us.

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Leaving the Involvement@York Register To comply with current data protection regulations, we will contact all Register members every two years to make sure that the data we hold about you is correct.

We will also check that you would still like to hear from us.

You can leave the Involvement@York Register at any time and you do not need to provide us with a reason for leaving.

To do so, you simply need to contact us and tell us that you no longer wish to be a Register member.

Once you have left the Register, you will no longer receive our regular research involvement opportunities email.

Your details will be removed in their entirety from our Involvement@York Register database. You are welcome to rejoin the Register at any time.

Removal from the Involvement@York Register We are committed to upholding high standards of conduct and mutual respect within our community of Register members.

We reserve the right to remove anyone from the Register if their conduct does not align with those standards. We do not anticipate needing to do this very often.

Anyone removed from the Register will be notified of this decision and they will no longer be sent opportunities to get involved in University of York research through Involvement@York.

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PAYMENT for Public Involvement in Research

We understand and respect that payment for public involvement in research is a critically important issue for many public contributors.

We understand that not all public contributors wish to receive payment for their time and have every right to decline it.

For those who wish to receive payment, we understand that it can make you feel valued and respected, especially when payments are timely and payment processes are clear and easy to navigate.

Involvement@York recommends that all researchers at the University of York follow the National Institute for Health and Care Research (NIHR) good practice guidance on payment for public involvement in research.

This means that where possible you should be offered payment for any involvement activity you undertake. You should also be paid back for any expenses you incur as part of your involvement. This typically covers things like travel expenses, and some cases may include care cover costs. You should always check what will and will not be covered before spending any money.

The rates of payment offered to you will vary by project; but every project should make you aware of the nature of the involvement, the duration and frequency of the involvement, the amount that particular project is offering you and what expenses they will cover for you.

It is again your choice whether you do or do not accept payment.

The University’s Payment Policy for Research Involvement and Research Participation sets out how public contributors to research should be paid and the payment processes University staff should follow to ensure they are paid quickly.

In summary, you should expect: • • • •

To complete a short claim form to receive payment.

To receive help to complete this claim form if you need it.

To be paid by BACs transfer straight to your bank account.

To be paid within two weeks of submitting your claim form.

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PAYMENT IMPLICATIONS

It is very important... that you understand that receiving payment for public involvement may have tax and benefit receipt implications.

It will be your responsibility to manage the tax or benefit implications arising from any payments for public involvement in research. The University of York will not be able to provide any financial advice to public contributors in relation to either.

More detailed information is set out in the University’s Payments Policy for Research Involvement and Research Participation.

We will share a copy with you when you join the Register.

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ETHICAL PRACTICE AND

SAFEGUARDING The University of York expects the highest standards in the conduct of all research undertaken in its name, on its premises, and using its facilities.

Involvement@York will always work with you and other public contributors to research in a way that is ethical, appropriate, and mutually beneficial. We also support University of York researchers to work with you in this way too.

Our practice is continuously underpinned by the principle of the avoidance of harm. We cannot however remove or reduce the risk of harm altogether and instead work to identify potential risks, and implement strategies to mitigate or manage those risks We continually review and improve our practice by working in partnership with the University’s Academic Ethics and Compliance Committee and department-level ethics committees.It is also important that you think carefully about becoming involved in any research involvement activity as a public contributor to research and consider whether you would feel safe and comfortable doing so. This is especially important with respect to sensitive research areas or topics. If you have any concerns, please do not hesitate to contact us. Where appropriate, we will work with you to implement additional safeguarding strategies. We also welcome any other questions you may have about ethics and safeguarding in relation to public involvement in research and other participatory research methods. You can however raise an independent complaint about Involvement@York with the University’s Research Innovation and Knowledge Exchange Directorate’s Senior Leadership Team.

You can contact them via email at: rike-manager@york.ac.uk.

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I wanted to get involved to learn new things and to broaden my interests, also to meet new, interesting people.

Involvement@York Register Member 19

CONTACTING Involvement@York

CONTACT US Postal Address: Involvement@York University of York York YO10 5DD Telephone number: 01904 326727 Our number is a messaging service only. Please leave a message that includes your name and contact details and we will get back to you as soon as possible.

Email Address: involvement@york.ac.uk Web Address: www.york.ac.uk/involvement

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This document is available in Audio, Large Print and E-text versions. Please call 01904 326727 or email involvement@york.ac.uk to request a copy.