NEON Collection

What is the NEON Collection?

The NEON Collection consists of over 600 stories from people who have experienced mental health problems and a sense of recovery from this, in many different ways. It includes stories that have previously been published by  (e.g. in pamphlets, books or online), and stories that have been donated by members of the public or participants in interviews with NEON study researchers.  All narrators have given their permission for their stories to be included.  The stories are in various formats, including written (prose and poetry), videos, audio and images.

Who can access the NEON Collection stories?

Stories in the NEON Collection are currently only available to participants in the NEON study trials and all future access will require a username and password.  The Collection will never be searchable online.  Participants in the trial get a login to the NEON intervention website, which allows a user to browse for stories they want to look at, or to be matched to stories based on information they provide.  The trial is running between March 2020 – April 2022.  After this time, if it is found to have been useful by trial participants, we hope the NEON Collection will continue to be available online, using a similar login system for more groups of people.

Can I donate my own story to the NEON Collection?

Yes!  We are inviting donations of stories.  Please see here for further information and to donate your story if you choose.  If you would like your story to be involved in the NEON trials, you would need to donate your story by the end of 2021.  Donations will stay open beyond this date, and your story would be used in future versions of the NEON intervention. 

What kinds of story can be included?

Stories in the NEON Collection can only be included if they meet all of the following six 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 strengths, successes 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 internal states (e.g. changes in mood, perception, perspective)
4. The story must be told by a single individual with experience of mental health problems and self-defined recovery
5. Where speech or words are used, the story is mainly in English, or if translated the translation needs to be provided or approved by the narrator

Format

6. Either (a) the story is provided in a digital file OR (b) the story is provided in a format which can 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. We can help with format if you choose to donate.

Are there any 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. if the story is told entirely by a carer or journalist
3. (for video and audio stories) where the quality of recording is so low that the story is very difficult or not possible to understand
4. where the story uses a multimedia approach which cannot easily be integrated into a single file or format
5. that contain descriptions of potentially harmful behaviours in sufficient detail as to be likely to encourage imitation
6. that indicate that the narrator has engaged in a previously undisclosed serious criminal activity
7. where the narrator is a child or appears to be a child, unless it has been confirmed that the narrator is now an adult and has provided consent for a childhood story to be shared
8. that contain hate speech
9. that provide information about a third party which might reasonably lead to harm being caused to the third party such as providing directly identifying information about someone accused of abuse
10. that include sensitive personal information about individual third parties, unless the third party has already made this information public, e.g. by publishing their own recovery story, or unless the third party is no longer alive. A story includes sensitive information (as defined in UK data protection law) about a third party if it clearly reveals their political or religious beliefs, mental or physical health conditions, sexual orientation or behaviours, or any offences committed or alleged to have been committed by them
11. that reveal the adoption status of a third party, unless the third party has already made this information public
12. that raise any other unforeseen concerns, in which case this list of reasons for exclusion may be updated

What happens if it is uncertain whether a story can be included?

If there is uncertainty around whether or not a story meets the inclusion/exclusion criteria, the NEON study team will first attempt to refine criteria. If uncertainty remains, or if there are competing ethical considerations, then the NEON team will consult with the following specific individuals or groups to make a final decision:

• If a story meets none of the exclusion criteria, but if there is uncertainty as to whether it meets all of the inclusion criteria, then it will be referred to the NEON Collection Steering Group (CSG), who meet quarterly, but who can consider stories outside of these meetings. This group currently includes four members from our Lived Experience Advisory Panel and two members of the NEON research team. CSG can make a decision on the story, and recommend updates to inclusion or exclusion criteria (which will be updated on this web-page). CSG will also make final decisions where the research team are uncertain about whether a story meets exclusion criteria 1, 2, or 3

• If a story meets all of the inclusion criteria, but where the research team are uncertain about whether it meets exclusion criteria 4, 5, 7, 11 or 12 then the final decision will be by the NEON study Chief Investigator. If the uncertainty is around exclusion criteria 6, 8, 9, 10 then an opinion will be sought from a legal representative appointed by the study sponsor

Source collections or individual narrators (as appropriate) will be informed of those stories that we have decided to exclude, and can appeal to have a decision changed. Appeals will initially be considered by the NEON study team, and referred to CSG (exclusion criteria 1,2,3) or CI (other criteria) if the NEON study team is unable to make a decision.

Source collections or individual narrators (as appropriate) will be informed of those stories that we have decided to exclude, and can appeal to have a decision changed. Appeals will initially be considered by the NEON study team, and referred to CSG (exclusion criteria 1,2,3) or CI (other criteria) if the NEON study team is unable to make a decision.

What reasons for exclusion have been applied to stories so far?

Of the 103 stories excluded so far:

48 did not describe the narrator’s own lived experience (ie they were about someone else’s experiences of mental health problems)

23 included sensitive personal information about other people

7 were group, not individual narratives

7 were not clearly about mental health

7 included no identifiable descriptions of successes, strengths or survival

3 did not fit our definition of a narrative (e.g. they were reports or commentaries)

3 contained information about an identifiable third party which might reasonably lead to harm being caused to the third party

2 were in multimedia formats

2 were missing some text and this could not be rectified

1 was a duplicate story already included in the collection

How does NEON gain consent for inclusion of recovery stories?

If a story has been donated to NEON by an individual, we  collect consent through an online form, as described below.

 We can accept donations of stories from existing collections, but only if (a) the owners of the collection have collected consent from their donors which is broad enough to allow for re-use in the NEON Collection, OR (b) individual narrators are approached by the owners and give this consent.

I am an editor of a collection/my organisation has collected recovery stories – should I work with NEON?

So far (October 2021), 31 organisations have worked with NEON to offer stories to the Collection.  We are interested in hearing from any collaborators who would like to offer recovery stories for use in the NEON Intervention, or who can help increase our understanding of 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.

NEON will provide a direct 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.

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.

What other organisations are involved?

31 organisations have collaborated with NEON on providing stories for the collection so far.

Some of the stories have been provided by the following organisations, who have also helped us to understand how to build the NEON Collection:

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

Scottish Recovery Network

Schizophrenia Oral History project

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

If it is your own story, you are guaranteed to be able to withdraw it. You can either use this form, or contact the study sponsor by emailing Research@nottshc.nhs.uk. 

If you are concerned about someone else’s 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 using this form. To protect the rights of narrators, third parties do not have an absolute right to request withdrawal, but each third-party request will be considered sensitively using processes agreed with our study sponsor and an NHS ethics committee.

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 using this form. To protect the rights of narrators, third parties do not have an absolute right to request withdrawal, but each third-party request will be considered sensitively using processes agreed with our study sponsor and an NHS ethics committee.

Where we have appropriate consent from narrators, narratives may be shared with other researchers for the purposes of analysis only. If a narrative is withdrawn, then all researchers who have been provided with access to the narrative will be instructed to remove it. A legal contract is in place to ensure that removals are actioned. 

Can I update a story I have previously donated?

Yes!  Please send your updates to us here and we will upload them as an additional file.

What if a story in the NEON Collection breaches my copyright?

If you believe that a story breaches your copyright, please contact us using this form.

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 research@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?

By emailing neon@nottingham.ac.uk.