PACE trial: QMUL appeal information re hearing on 20 - 22 April (UK)

[moosie]

Valerie Eliot Smith mentions that the public may be allowed to attend (though it may all change on the day etc) but i can't find any information as to what this entails. Like when do you turn up? Do you need specific identification etc. Never thought about doing this before. It's a pretty slim hope that I could go but my husband said he might be able to take me. Anyone even know where to start to look for this information? So far Google has failed me - but I am a bear of very little brain at the moment.

 

[Luther Blissett]

Valerie Eliot Smith mentions that the public may be allowed to attend (though it may all change on the day etc) but i can't find any information as to what this entails. Like when do you turn up? Do you need specific identification etc. Never thought about doing this before. It's a pretty slim hope that I could go but my husband said he might be able to take me. Anyone even know where to start to look for this information? So far Google has failed me - but I am a bear of very little brain at the moment.

I don't think it will be open to the public, but If you (or anyone else) would like to ring and ask, the telephone number for the venue is 0207 446 7700. E-mail is
rplondon@hmcts.gsi.gov.uk

 

[moosie]

I don't think it will be open to the public, but If you (or anyone else) would like to ring and ask, the telephone number for the venue is 0207 446 7700. E-mail is
rplondon@hmcts.gsi.gov.uk

Thanks for that.

"Hearings are generally open to the public, unless the Tribunal is considering “closed material” (often the core subject matter of the case) at which point the court room will be cleared. That may or may not happen in this case." from original post by Valerie Eliot Smith.

So I guess we'll see . . . Pretty unlikely that I could attend anyway. Can't imagine lasting longer than about an hour. Though would make my very best effort if no one else from PR will be able to. I'm due a reckless health day. Been in major recovery mode since Coynegate

 

[Esther12]

I would love to know what QMUL's arguments are. A couple of dignified patients attending could help challenge some of QMUL's attempts to make us seem like a machete waving horde?

Who knows though... no matter how meek they could still be seen as a distressing campaign against scientific progress!

 

[John Mac]

Who knows though... no matter how meek they could still be seen as a distressing campaign against scientific progress!

Yes a large group of patients turning up for this could play right into their hands.

 

[Luther Blissett]

I know of one big case in which the Department of Work and Pensions (DWP) refused a FOI request for the names of businesses and charities that it was sending 'customers' to for Mandatory Work Activity (MWA) and Work Programme placement. (aka Workfare)

The requester appealed to the Information Commissioner, who told the DWP to answer the request. The DWP appealed to the tribunal who turned the appeal down, the DWP appealed to the higher tribunal and lost again.

In that case, the DWP was arguing against providing the information because of the damage that '"aggressive targetting” by protesters' would cause. They pulled out all the stops with a media campaign against the protesters, (commie agitatators, dangerous anarchists, etc.) and at the tribunal produced evidence from blogs in which the minister was called a 'Lying Bastard', and the workfare providers 'thieving fucking criminals', and that 'people are dying because of you'.

Now in that case, the requester put forth the argument of the public interest in disclosure, but there are interesting parallels I can see in the cases, (media campaigns, so called dangerous blogs and dangerous people getting their hands on information, etc) and the tribunal still found against the government department.

So without trying to sound too optimistic, the Establishment does not always win, there is hope.

For anyone who wants to read more, the original FOI request is here https://www.whatdotheyknow.com/request/successful_bidders#comment-51064 (includes further information as the case developed)
One of dangerous blogs is here https://johnnyvoid.wordpress.com/20...ing-bastard-court-hears-at-workfare-tribunal/

And a wonderfully ironic campaign that grew out of this and other protests is the 'Keep Volunteering Voluntary', where charities sign a pledge "As charities and voluntary organisations we know the value of volunteering. Volunteering means people independently choosing to give their time freely to help others and make the world a better place. Workfare schemes force unemployed people to carry out unpaid work or face benefit sanctions that can cause hardship and destitution. We believe in keeping volunteering voluntary and will not participate in government workfare schemes.”

http://www.keepvolunteeringvoluntary.net/

 

[Large Donner]

In that case, the DWP was arguing against providing the information because of the damage that '"aggressive targetting” by protesters' would cause. They pulled out all the stops with a media campaign against the protesters, (commie agitatators, dangerous anarchists, etc.) and at the tribunal produced evidence from blogs in which the minister was called a 'Lying Bastard', and the workfare providers 'thieving fucking criminals', and that 'people are dying because of you'.

I just don't know what world some of these people are living in when they try to use such examples in support of blocking free access to information.

Two blokes go down the pub and swear and cuss about politicians in a free society where disagreement is democracy in essence.

Some people write down the stuff they say so others can read it and lots of people are connected. So what!!!!?

The big bad internet making people connect more than just two blokes in a pub....quick, stop our democracies now, too many people are thinking the same thing based on sharing of information.



This is a justification to block access to public information?

Some people might use swear words about how the political process works, shock horror........

And its the public who are accused of being the "commies and dangerous anarchists, etc"?...

.....whilst the state tries to repress information.

Oh the Irony!!!

What an upside down world!

 

[Esther12]

I feel like the data [freudian slip: date] for this has really snuck up. I got used to it being this big important thing off in the future, not something that was going to be happening right now!

Hope it's all going well. Best wishes to anyone working to get this data out.

 

[Large Donner]

If QMUL are successful in putting up the defense that they cannot release data on the grounds of protecting the study participants identities, which we all know is a nonsense, surely then by default the paper must be retracted by the Lancet as it can be said to draw no scientific conclusions.

Secondly surely the participants must have been aware or made aware that data sharing is crucial and obligatory and if they didn't sign up on these terms then have they signed up on contrary terms?

Are QMUL not familiar with the English alphabet, ie patient A patient B etc....it seems they have such a weak case that if they win, something dodgy would have to be going on behind the scenes at the hearing.

 

[A.B.]

Do we have a patient or supporter attending today that could tell us how the situation looks?

Is Alem Matthees active on social media?

 

[Esther12]

If QMUL are successful in putting up the defense that they cannot release data on the grounds of protecting the study participants identities, which we all know is a nonsense, surely then by default the paper must be retracted by the Lancet as it can be said to draw no scientific conclusions.

I don't think so - the Lancet is not exactly at the forefront of the fight to improve the reliability of medical research findings by encouraging independent scrutiny.

A finding that the requested data is personal data, and cannot be shared without written consent because of that, would have very serious implications for broader attempts to improve medical research through greater openness with data. Presumably it would mean that FINE, and many other studies and researchers, had breached the Data Protection Act. It would mean that anonymisation of trial data was seen as basically impossible, as the data requested from PACE is already so limited in nature.

 

[Chrisb]

In that case, the DWP was arguing against providing the information because of the damage that '"aggressive targetting” by protesters' would cause. They pulled out all the stops with a media campaign against the protesters, (commie agitatators, dangerous anarchists, etc.) and at the tribunal produced evidence from blogs in which the minister was called a 'Lying Bastard', and the workfare providers 'thieving fucking criminals', and that 'people are dying because of you'.

In this context the report in today's Guardian show the possible extent to which authority will go.

http://www.theguardian.com/uk-news/...er-claims-undercover-officer-set-fire-to-shop

The allegations may of course be wholly unfounded. It is the fact that the issue is considered worthy of investigation that is interesting.

 

[user9876]

I don't think so - the Lancet is not exactly at the forefront of the fight to improve the reliability of medical research findings by encouraging independent scrutiny.

A finding that the requested data is personal data, and cannot be shared without written consent because of that, would have very serious implications for broader attempts to improve medical research through greater openness with data. Presumably it would mean that FINE, and many other studies and researchers, had breached the Data Protection Act. It would mean that anonymisation of trial data was seen as basically impossible, as the data requested from PACE is already so limited in nature.

Given the PACE authors published individual data in the serious adverse events section of the lancet paper it my bring their practices into question.

 

[Esther12]

Given the PACE authors published individual data in the serious adverse events section of the lancet paper it my bring their practices into question.

Oh no! Participants might self-identify, destroying their right to privacy from themselves.

 

[Sean]

Oh no! Participants might self-identify, destroying their right to privacy from themselves.

Typical bastard patients.

 

[Luther Blissett]

In this context the report in today's Guardian show the possible extent to which authority will go.

http://www.theguardian.com/uk-news/...er-claims-undercover-officer-set-fire-to-shop

The allegations may of course be wholly unfounded. It is the fact that the issue is considered worthy of investigation that is interesting.

The infamous Bob Lambert.

On 23 October 2014, the Metropolitan Police Service agreed to pay £425,000 to a woman called Jacqui whose child was fathered by Lambert; she did not know at the time of their relationship that he was an undercover police officer. The payment was part of an agreement for her to drop her legal action alleging assault, negligence, deceit and misconduct by senior officers.

Don't get me started on the Met.

 

[alex3619]

surely then by default the paper must be retracted by the Lancet as it can be said to draw no scientific conclusions.

Sadly this is not the case or a whole lot of published science would have to be retracted. What can be said is that non-publication puts even more doubt on the PACE findings.

The next few days should be interesting.

 

[cornwall13]

When we know the result?

 

[Sasha]

When we know the result?

I read somewhere (Valerie Eliot Smith's blog?) that it could take 3-4 weeks.

Any news, @charles shepherd?

 

[Esther12]

I read somewhere (Valerie Eliot Smith's blog?) that it could take 3-4 weeks.

Aargh... so tense... 3-4 weeks.... might die...