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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 these, 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 study team researchers. All future access will require a username and password so that the Collection is not searchable online.  We are planning for widescale availability of the NEON Collection. 

How many stories are in the NEON Collection?

There are currently 657 stories in the NEON Collection (April 2024).  103 stories that have been offered to us were not included due to not matching our inclusion and exclusion criteria, for example because they were not people’s own stories.  You can see a full breakdown of reasons why these stories were not included below.

Can I donate my own story to the NEON Collection?

Not at present,  as the first phase of research funding for the NEON study has concluded. However, we hope to be able to receive more donations in the future. 

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

  1. 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

How is inclusion and exclusion decided?

The NEON study team developed the above inclusion and exclusion criteria in partnership with a steering group of people with lived experience and of telling their story.  Stories are included automatically if (1) they meet all of the inclusion criteria,  (2) we have valid consent, and (3) they meet none of the exclusion criteria.  When stories are excluded, narrators are informed and can appeal the decision.  An overview of the process is here.

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

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

We are have an ongoing interest 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. 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