Mental health advocate Mike King's 1000 Letters project is no longer accepting submissions as documents reveal several complaints were made to the Ministry of Health about it – but the charity says the halt was planned.
Mr King, through his charity Key to Life, made a plea in September last year for the families of suicide victims to share suicide notes with his team, so they could be analysed for common themes which might help prevent future deaths.
The project was strongly criticised by the head of the Ministry of Health's health and disability ethics committee, Kate O'Connor, who said the study could lead to harm, and that it may not have been adequately designed to deal with ethical and privacy considerations.
The Ministry requires that studies of this nature are put before an ethics committee before they begin, and approval can't be given retrospectively.
The link to the submission page for the 1000 Letters study now leads to a 404 page not found error, but Key to Life CEO Mike Dawes says it was taken offline at the end of October - at "the end of planned intake".
Mr King, who was recently injured in a serious motorcycle crash, declined to comment when contacted by 1 NEWS about the project, and repeated emails to the charity's contacts were not answered.
It remains unclear as to whether the project is proceeding, but Mr King told RNZ's Checkpoint programme in late October he would not be halting the programme, as requested by Ms O'Connor.
Meanwhile, a spokesperson for the Health and Disabilities Commissioner has confirmed a formal complaint has been received about 1000 Letters.
The Ministry of Health has also received complaints, with documents obtained under the Official Information Act showing several were received by the ministry's ethics team and their health and disability ethics committee in late September.
One complaint came from "a collective of suicide attempt survivors and bereaved whānau" composed of 123 private individuals, mental health advocates and non-government organisations.
Three private individuals also complained, as did one other health sector professional body, the name of which was withheld.
The collective wrote in their complaint that "we collectively believe this study is poorly designed and unable to deliver valid findings regardless of how much data they gather.
"We highlight that those of us who have left letters during our own suicide attempts are collectively horrified by the idea that our family members would be encouraged to share such personal material with researchers without knowing how they will handle or share this information.
"We are clear that we would not want our letters shared even in the event that the project had safety measures in place.
"Our notes do not necessarily represent us or the reasons for our actions accurately - often there is great regret over things written in great distress.
"The complex interplay of factors involved cannot be conveyed in a suicide note written to specific people with a specific purpose in mind.
"We acknowledge that there are people out there who would like to share their letters, that is their decision.
"As far as we can tell no demographic information is being collected to give context to these stories and letters and inform reliable, valid interpretation of the results.
"There also appears to be no consideration for people’s cultural needs at any point, and this raises specific concerns for the safety of Māori data.
"It does not appear that any experienced researchers have been involved in the design of this study, or the data collection that is currently underway, in what can only be described as an ad-hoc manner."
* An earlier version of this story implied the 1000 Letters submission page had been taken down as a result of complaints made about it to the Ministry of Health. Key to Life did not respond to repeated requests for comment about the project, but CEO Mike Dawes maintains he was unaware of them, and says "the fact it’s down is in no way related to any requests to do so - it’s down because the intake ran its planned course."
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