Research into Recovery and Wellbeing

A website about the work of the recovery research team at the Institute of Mental Health

The University of Nottingham

The NEON Collection

What is the NEON Collection?

The NEON Collection is a collection of stories of recovery from a range of mental health problems. It includes stories that have previously been published by others (e.g. in pamphlets, books or on-line). It also includes recovery stories collected by researchers working on the NEON study. 

Why are we doing this?

To research the benefits of engaging with recovery stories for people experiencing mental health problems, and the use of recovery stories to influence the beliefs and attitudes of mental health staff about recovery. The NEON Collection will be used in a number of research studies, including a clinical trial with almost 700 participants. To support this work, we aim to assemble the largest and most diverse collection of recovery stories in the world.

How will people access the NEON Collection?

People experiencing mental health problems will access stories in the NEON Collection through their web-browser, using an interface which we are in the process of designing. One function of this interface will be to try and match people to stories that might help them. Although most of the material in the collection will have been published already, access to this interface will be controlled by a username and password, and users will not be allowed to copy material.

Who is supporting us?

We are collaborating with a number of organisations who have experience of working with recovery stories. This currently includes:

Recovery Devon (producers of Beyond the Storms and Riding the Storms)

HealthTalk

HealthTalk Australia

Here to Help

Scottish Recovery Network

Schizophrenia Oral History project

 

What types of story can be included?

Stories in the NEON Collection must meet all of the following requirements:

Content

1. The story includes elements of adversity or struggle that relate to mental health problems, broadly defined

2. The story includes descriptions of strength, success or survival, as defined by the narrator or identifiable by a third-party

3. The story must refer to events or actions over a period of time. "Events" can include external events or mental events (e.g. changes in mood or perception)

4. The story must be told by individuals with experience of mental health problems and recovery. We include stories that feature several narrators, as long as each person is telling their own story. 

5. Where language is used, the story is be mainly in English.

Format

6. Either (a) the story is provided in a digital file OR (b) the story is provided in a format which can be easily be converted into a digital file OR (c) the story is hosted on an existing web-page, the URL to the web-page is permanent, and the page does not contain links that would enable navigation to another page.

Permission

7. We have ongoing consent to use the story. If stories have been collected by an organisation, then we can include them if either (a) the organisation has already collected consent which is broad enough to allow for re-use in the NEON Collection OR (b) if individual narrators are approached by the organisation and give this consent. If the story is offered by an individual, then the individual must complete an on-line consent form.

Are there any recovery stories that will not be included?

We do not include stories in the NEON Collection:

1. that are presented as fictional

2. that are told by anyone other than the individual experiencing mental health problems and recovery, e.g. the story is told by a carer or journalist

3. which indicate that the narrator has engaged in an undisclosed serious criminal activity

4. which make reference to an identifiable third party in a negative or defamatory way

5. (for video and audio stories) where the quality of recording is so low that the story is very difficult or not possible to understand

6. which include sensitive personal information about individual third parties, unless the third party has already made this information public, e.g. through publishing their own recovery story, or unless the third party is no longer alive. Sensitive personal information is defined as in GDPR, e.g. information relating to the racial or ethnic origion of the third party, their political or religious beliefs, physical or mental health conditions, sexual orientation or behaviour, and any offences committed or alleged to have been committed by them.

7. if there are any other reasons which raise concerns, e.g. the primary purpose of the story is to advertise a product, or the story contains hate speech or obscene material

How will inclusion and exclusion be decided?

The NEON team will decide inclusion and exclusion for stories offered to the collection, and will have a bias towards inclusion. In cases where it is uncertain whether a story should be included or excluded, the NEON team will consult on a quarterly basis with the NEON Collection Steering Group. This group includes four members from our Lived Experience Advisory Panel who are independent of the study team, who have their own lived experiences of mental health problems, and who will make the final decision about whether stories should be included or not. Source collections or individual narrators will be informed of those stories that we have decided to include and exclude.

Inclusion and exclusion criteria will be updated on this web-page based on evolving experience, so this page always represents our current understanding of what stories we will include and exclude.

My organisation has collected recovery stories – why should I work with NEON?

NEON will provide a route to using recovery stories for the benefit of people experiencing mental health difficulties. We will also produce study outputs, such as best practice guides for recovery story curation, that will benefit all organisations who work with recovery stories. We are particularly interested in hearing from organisations who would like to offer recovery stories for use in the NEON Intervention, or who can help us understand how to use recovery stories for the benefit of people experiencing mental health problems.

NEON is a large and internationally-visible research study, and we will actively acknowledge contributions from existing collections. The source of any stories used in the NEON Collection will be acknowledged whenever used, along with a link to your website. Working with NEON will draw attention to your own work.

Stories hosted directly within the NEON Collection will be held safely and securely, and backed up to secure servers. Replicating material in this way might provide benefits to smaller organisations, as an extra layer of safety for the valuable material that has been collected. If you do not wish us to host your material, then we can link to it externally

If you are an organisation who has produced a collection of recovery stories, and would like to collaborate with NEON, then please get in touch, using the contact details at the end of this webpage. 

Can I donate my own story to the NEON Collection?

We are working towards a process that will allow individuals to do this - details will appear on this webpage once they are ready. Until then, if you would like to donate a story, please get in touch using the contact details at the end of this webpage, and we will let you know as soon as we are ready to receive individual stories.

Can I ask for a story to be withdrawn from the NEON Collection?

All narrators of stories have an absolute right to request withdrawal of their story at any point. If we have been provided with your story by an organisation (such as HealthTalk.org or Recovery Devon), then you can either contact your organisation and ask them to submit a withdrawal request, or contact us directly, using the contact details at the end of this webpage. To protect us from malicious request for withdrawal (e.g. by people pretending to be narrators of stories), then we may check back with the source organisation.

If you are concerned about a story in the NEON Collection, for example if you believe that the person offering the story did not have capacity to consent, then please contact us. Third parties do not have an absolute right to request withdrawal, to protect the rights of narrators, but each third-party request will be considered sensitively, using processes agreed with our study sponsor and an NHS ethics committee.

Who has oversight of the NEON Collection?

Our study sponsor, Nottinghamshire NHS Foundation Trust, is overseeing the process of managing the NEON Collection. They can be contacted through RandIenquiries@nottshc.nhs.uk. 

The processes for managing the NEON Collection have been submitted and given favourable opinion by the West London & GTAC Research Ethics Committee (reference 18/LO/0991), and by the UK Health Research Authority (reference 247343). 

How can I contact NEON?

In the first instance, please contact the NEON Programme Coordinator, Stefan Rennick-Egglestone, through stefan.egglestone@nottingham.ac.uk.