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NEON Collection: Information for Narrators

Version 2.0. 28th June 2018. IRAS: 247343.


The NEON Collection is a collection of stories providing insights into how individuals have recovered from mental health problems.

Stories in the NEON Collection have either been donated by organisations who have collected their own stories, or by individuals who have given their story to the study.

The NEON Collection is being assembled by the NEON Study, a research study funded until 2022 by the NHS National Institute for Health Research through its Programme Grants for Applied Research scheme (grant number RP-PG-0615-20016).

What do we mean by “recovery”?

In the context of the NEON Collection, recovery is defined as the process of living as well as possible, as defined by the individual,  with or without continuing to experience mental health problems.

Why should I offer my story to the NEON Collection?

Stories will be made available to people with mental health problems, with the aim of increasing their hopefulness that a meaningful life is possible and improving their quality of life.

They will also be made available to mental health staff, with an aim of reducing therapeutic pessimism and increasing staff hopefulness about the likelihood of recovery from mental health problems.

Our intention is that the NEON Collection will live on beyond the end of the NEON Study, and that it will become a useful resource to help improve the lives of people experiencing mental health difficulties.

How do I offer my story?

Please click on the following link to access a form, which will allow you to upload your story, and indicate that you are willing for it to be used in the NEON Collection.

What will happen to my story after I offer it?

It will be assessed by the NEON Study team, who will check it against inclusion and exclusion criteria. If it matches against all of the inclusion criteria, and doesn’t match any of the exclusion criteria, then we will include it.

Before submitting your story, you should read the inclusion and exclusion criteria listed here and here

If accepted, your story will become accessible to people experiencing mental health problems and/or to mental health staff.

How long will you keep my story for, and how can I withdraw it?

We will keep your story, unless you choose to withdraw it. You are guaranteed to be able to withdraw it up until the end of the NEON study. If you wish to withdraw it, please use the following form.

If the NEON study is successful, then the NEON Collection may continue in public use beyond the end of the study, in which case we will continue to use your story, and you will retain the right to withdrawal, using the form above.

Alternatively, the NEON Collection may be archived, to closed archival storage, in which case no one other than a representative of the Chief Investigator will be able to access it, and it will not be viewable to the public. We may also choose to delete all stories at the end of the NEON Study.

What happens if I withdraw my story?

We will delete our copy of your story, and delete any other information that we hold about you.

Are there any dangers that I should know about?

Users viewing your story will have to register an account, but once this has been accepted, it is impossible to stop them taking a copy of your story. As such, there is a possibility of your story becoming openly accessible to other people, outside of our control. We will immediately exclude users if we learn that they are copying and distributing material.

What this means is that, although we can remove your story at your request, copies of your story may have been reproduced and be elsewhere on the internet, and we will not be able to remove these. If you choose to submit your story, then you will be asked to confirm that you understand this.

How can I learn about the results of the NEON Study?

Results will be presented through the study website here

Who is organising the NEON Study?

The sponsor for the study is Nottinghamshire Healthcare NHS Foundation Trust. The study is based in England.

Who has approved the NEON Study?

All research in the NHS is reviewed by an independent Research Ethics Committee, to protect your interests. This study has been reviewed and given favourable opinion by <insert REC name and contact details>. The project has also been reviewed by the Health Research Authority, and by the Research and Innovation Team at Nottingham Healthcare NHS Foundation Trust.

What if something is going wrong?

If you have any concern about the NEON Collection, or any other feature of the NEON Study, you can contact the programme coordinator Stefan Rennick-Egglestone on 0115 82 30926 or through stefan.egglestone@nottingham.ac.uk.

If you remain unhappy, and wish to formally complain, you can contact the Research and Innovation office at Nottinghamshire Healthcare NHS Foundation Trust, by email to RandIenquiries@nottshc.nhs.uk or phoning 0115 9691300 extension 11903 or 11904.

Alternatively, you can contact your local Patient Advice and Liaison Service in the following ways:

Phone: 0115 993 4542

Email: complaints@nottshc.nhs.uk

Write to:

Patient Experience Team Moorgreen House Highbury Hospital Nottingham NG6 9DR

GDPR information

The sponsor will act as the data controller for this study. The sponsor is responsible for looking after any information provided by your, and using it properly.

Your story and contact information will be held on a server under the control of the University of Nottingham, who have who have been contracted by the sponsor to undertake these duties. This information sheet specifies how your story and contact information will be processed.

Your rights to access, change or move the information that the sponsor holds about you are limited, and are specified on this Participant Information Sheet. To safeguard your rights, the minimum amount of personally-identifiable information possible will be used.

You can find out more about how the sponsor uses your information by contacting RandIenquiries@nottshc.nhs.uk

If you have provided your consent, then your story may be provided to other organisations. These organisations may be universities, NHS organisations or companies involved in health and care research in this country or abroad. Your story will only be used by organisations and researchers to conduct research in accordance with the UK Policy Framework for Health and Social Care Research. We will not pass your contact details to other organisations.