What is the NEON Collection?
The NEON Collection contains stories of recovery from mental health problems. It includes stories that have previously been published by others (e.g. in pamphlets, books or on-line), stories that have been donated to the NEON study, and stories that have been collected by researchers working on the NEON study.
How many stories are in the NEON Collection?
As of 5th November 2020, there are 489 stories in the NEON Collection. A further 34 stories are currently being considered. 99 stories that have been offered to us have not been included due to not matching our inclusion and exclusion criteria – for example, stories which are not about the person’s own lived experience.
How will people access the NEON Collection?
Stories in the NEON Collection will be made available through the NEON Intervention, a set of interactive webpages which are accessed through a web-browser or smartphone. The NEON Intervention allows a user to browse for stories using some of the characteristics defined in the Inventory of Recovery Narrative Characteristics (INCRESE), which has been developed by the NEON study. The NEON Intervention can also recommend a story with characteristics that might be expected to help the user. A small number of stories in the collection will also be integrated into material used in the training of mental health staff– e.g. in staff induction programmes, or other forms of professional development. This might involve stories appearing in presentations or printed materials. The NEON Intervention is currently being evaluated in three clinical trials, which you can register for at https://recoverystories.uk
What types of story can be included?
Stories in the NEON Collection can only be included if they satisfy all of the following requirements:
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 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 recovery
5. Where language is used, the story is mainly in English, or if translated the translation needs to be provided or approved by the narrator
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.
A story is included in the NEON Collection once a NEON researcher has characterised it using INCRESE (to allow their integration into the NEON Intervention) and once the inclusion criteria and five items in INCRESE that relate to potentially-distressing content have been double-checked by a second NEON researcher.
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 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 is split across multiple files or modalities or uses a multimedia approach which cannot easily be integrated into a single file
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 will inclusion and exclusion be decided?
In the first instance, the NEON study team will develop inclusion and exclusion criteria, and will decide on inclusion for stories offered to the collection. We will have a bias towards inclusion in criteria design and decision-making. Stories will be included automatically if they meet all of the inclusion criteria, if we have valid consent, and if they meet none of the exclusion criteria.
If there is uncertainty around interpretation, 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.
How will we collect consent for inclusion of recovery stories?
If a story has been donated to NEON by an individual, then we will 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.
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?
Yes, we will be accepting donations of stories up until the end of the study.
Please see here for further information and to donate.
Can I ask for someone’s story to be withdrawn from the NEON Collection?
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.
A story in the NEON Collection breaches my copyright
If you believe that a story breaches your copyright, then 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 email@example.com .
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 firstname.lastname@example.org.