“Vague but exciting…” is what Tim Berners-Lee’s boss scribbled on his proposal to build the worldwide web before giving him the go-ahead to start work. If today’s research proposal rules had been in place, I’d argue it might never have happened because, in health services at least, the process has become one of regimented, formulaic stultification. One that squeezes the life out of innovative thinking and pins it to endless rigid forms that will only admit x-number-of-characters-including-spaces. By the time a project has been approved and funding granted, the thing that so excited and wired you up to the mains with creative energy is flapping feebly in a box covered in deadlines, imperatives, shoulds, don’ts and musts. Fiscally responsible, yes, but with about as much punch as a collapsed flan.
Furthermore, worthy and tight as a drum as the poor thing now is, it will be a one-off. There are no repeat grants and this, astonishingly, means that research goes out published with the legitimising tag of having been NIHR (for instance) supported, but it will never be replicated to further evaluate its findings and replication is fundamental to the principles of validation in research findings.
Yes, we have to be responsible and not cavalier with money, people, resources, and ethics, and there has certainly been good work done by good people via this process. But coming back to true innovation – some of the biggest submitted no bids because they were working out of their bedrooms: Facebook, Microsoft, Apple, Google – who would have been courageous enough to fund those start-ups as research projects? I have no problem with thorough, painstaking, detailed research and the measures put in place to ensure nothing is wasted and nobody harmed. I do have a problem with the loss of a box for the ‘vague but exciting’ proposals that have the capacity to change worlds. Happy 25th birthday WWW, I think we are very lucky to have you.
If you’ve been following the Thorpe Park ‘Asylum’ debacle, this open letter from the Royal College of Psychiatrists may help illuminate the problem. Thorpe Park has, all along, been asked to change, not to close, its ill-advised attraction; so far with no response other than bland platitudes. One hopes this latest reasoned request will finally get through to them. http://www.rcpsych.ac.uk/mediacentre/pressreleases2013/openlettertothorpepark.aspx
For catch-up, much of the debate can be found here where onward links further fill out the debate. The twitter thread, #AsylumNO, has attracted considerable support and inevitably its detractors. Some of these I have found to be reasonable people who, after many exchanges, have become less entrenched in their view that Thorpe Park’s portrayal of ‘mental patients’ may not be harmful. Some though, have been quite astonishing in their capacity to extrapolate beyond the ridiculous, and others have been hateful, offensive, unreasoned attackers. I personally had several exchanges with a person who eventually claimed to be the designer of the ‘rape fantasy experience’ at The Scare Kingdom Scream Park in Lancashire. He told me that the Daily Mail had mis-reported, something I am disposed to accept, and said they had many complimentary comments. I asked him to tell me what the experience really was and to point me towards those comments, so that I could pass this along – I’m no more interested in unjustified entertainment-bashing than I am in letting truly horrific and harmful material go by unchallenged – but he chose instead to revert to attacking the objectors.
The RCP open letter is the most recent, and arguably the most high profile, response to Thorpe Park, and one hopes the company will finally be listening.
Supporters of the ‘Asylum’ maze argue that it is ‘only a few’ who do not see it as fantasy. Mental illness is largely invisible, with people often feeling too stigmatised to talk openly about it. But it affects one in four of us, so maybe it’s only a few till it’s you.
I should have taken a screenshot but I intended to post this clip so I copied it for pasting. The last sentence of the first paragraph along with a summarising link, has been removed [2 below which now points elsewhere]. See Halloween: What’s wrong with evoking the “scary mental patient” stereotype? for an update.
Thorpe Park is a theme park in Chertsey, Surrey, England, UK. After demolition of the Thorpe Park Estate in the 1930s, the site became a gravel pit. Thorpe Park was built in 1979 on the gravel pit which was partially flooded, creating a water-based theme for the park. The park’s first large roller coaster, Colossus, was added in 2002. Merlin Entertainments own and operate the park. In 2012 the park received 1.8m visitors, down from 2.0m visitors in 2011. In 2013 Thorpe Park attracted a wave of negative criticism from mental health campaigners for its ‘Asylum’ attraction, which appears to depict people with mental illness as frightening and out of control, reinforcing negative stereotypes around mental health.
We found differences among the coping styles identified by participants’ responses on the BICSI and their behaviours in-world. … The discrepancies between the BICSI scores and behaviours in-world suggest future research directions evaluating the longstanding problem of divergent expressed and reported attitudes.
This is a first for Ether Books: ‘Facial Disfigurement in Second Life‘ is a research paper detailing a study in which participants responded to the application of a facial scar to their avatar. A free download for smartphones. http://catalog.etherbooks.com/Products/3014
This is from our blog post after meeting with the two people from Grace Eyre who helped us make the videos:
Keith and Mikey had their first look at the videos today and it’s safe to say they were pretty pleased with them. I said we would be posting them up on the site by the end of the week and Mikey wanted to know where that would be. Keith said that they would be on the internet so ‘everyone’ could see them. He was even more pleased to think that his rather fine self would be preserved on film as his real self began to get a little older and maybe not quite so powerful-looking! … http://good-question.org/entries/demo-video/stamp-of-approval!
Consent to Participation (in research or other structured activity)
Consent to Treatment (or other individual procedure or activity)
We are developing commentaries in the form of notes to accompany the films and including some of the points in our FAQs sheet and we welcome questions and queries to help populate our information with pertinent material.