New MEGA study website (30 November 2016)

[Dx Revision Watch]

I accept that there is also a case for including the names - but this is the option we have chosen

Who is the "we".

And who was responsible for formulating the options put forward?

 

[user9876]

On a point of factual accuracy:

I have not received any guidance or instruction to say that anyone who signed the OMEGA petition cannot be a member of the PAG and I will be assessing the applications this coming week

In addition, I will not know the identity of the individual applicants - because these are being anonymised before they are passed to members of the assessment panel

I'm not sure how the forms can be anonymised given that the way the questions are answered are likely to suggest who the person is.

 

[Dx Revision Watch]

As there is going to be a Patient Advisory Group - comprising of patients, carers, other interested people, who could include clinicians and researchers...

Difficult, also, to anonymize applications from clinicians and researchers (who might then, potentially, elect to remain unidentified as members of the PAG). That wouldn't be acceptable in terms of transparency.

- it all depends on what you then want a MEGA Steering Group to do and what sort of people you want to include as members of the group

What I am looking for is a group defined as the body accountable for the project's management and its operation.

The PAG is an advisory group.

The MEGA Team list appear to have varying degrees of involvement, authority, knowledge about and investment in the project.

 

[charles shepherd]

Who is the "we".

And who was responsible for formulating the options put forward?

The selection panel + AfME (who are administering the collection of the application forms but are not involved in the selection process) + some members of the MEGA team

 

[charles shepherd]

I'm not sure how the forms can be anonymised given that the way the questions are answered are likely to suggest who the person is.

I would accept that anonymisation by removal of names is not completely watertight

 

[charles shepherd]

Difficult, also, to anonymize applications from clinicians and researchers (who might then, potentially, elect to remain unidentified as members of the PAG). That wouldn't be acceptable in terms of transparency.



What I am looking for is a group defined as the body accountable for the project's management and its operation.

The PAG is an advisory group.

The MEGA Team list appear to have varying degrees of involvement, authority, knowledge about and investment in the project.

My personal view is that the formation of a MEGA Steering Group is something that could be left until the protocol has been decided, the full membership of the MEGA team has been decided, the application has been submitted and approved for funding, and the study is in a position to start work

This is all some way off……

But this is something for the MEGA Team to decide - so you really need to be sending these questions to them

 

[BurnA]

My personal view is that the formation of a MEGA Steering Group is something that could be left until the protocol has been decided, the full membership of the MEGA team has been decided, the application has been submitted and approved for funding, and the study is in a position to start work

In other words after all the key decisions have been made?

 

[Dx Revision Watch]

My personal view is that the formation of a MEGA Steering Group is something that could be left until the protocol has been decided, the full membership of the MEGA team has been decided, the application has been submitted and approved for funding, and the study is in a position to start work

This is all some way off……

But this is something for the MEGA Team to decide - so you really need to be sending these questions to them

In other words after all the key decisions have been made?

Well shoot me down in flames if you like, Charles, but I would hesitate to leave the MEGA team in charge of a whelk stall.

 

[Chrisb]

Well shoot me down in flames if you like, Charles, but I would hesitate to leave the MEGA team in charge of a whelk stall

Well, one should certainly hesitate to leave them in charge of a Petition soliciting support for themselves

 

[Dx Revision Watch]

The new MEGA website launched on November 30.

Is anyone able to confirm whether any questions submitted via the Q & A page have been responded to and added to the Q & A page?

Somewhere on the site (I cannot now locate it) it stated that the questions submitted would be reviewed every couple of weeks or so.

 

[docsimsim]

The applications for membership of the MEGA PAG are being anonymised so we do not know the names of people who are applying

The choice of people for the PAG is supposed to be based on the information that has been provided on the application form - not the person's identity

So I think it is fair enough to decide that the name of the person should not be available to the selectors

I accept that there is also a case for including the names - but this is the option we have chosen

If you feel very strongly about this I suggest you complain to the MEGA Team using the contact details on the MEGA website

@charles shepherd these decisions/changes are being made too hastily, this is the first time I've heard of anonymisation of the PAG applicants.
May I ask whose idea this was?
You are asking people to raise their concerns about these last minute alterations via the (not public) MEGA contact details! How would that help when we are merely 16 hours away from the closing date for the PAG applications deadline?
It's interesting that Afme have been part of making this anonymisation decision, but applications (named) are going through them. That hardly inspires trust when Afme are already the most distrusted of our national charities

 

[docsimsim]

The new MEGA website launched on November 30.

Is anyone able to confirm whether any questions submitted via the Q & A page have been responded to and added to the Q & A page?

Somewhere on the site (I cannot now locate it) it stated that the questions submitted would be reviewed every couple of weeks or so.

I submitted 2 questions 4-7 days ago and have yet had no response

 

[slysaint]

Who is the "we".

"
The selection panel + AfME (who are administering the collection of the application forms but are not involved in the selection process) + some members of the MEGA team
"

"Applications will be considered by a panel consisting of representatives from the ME Association and ME Research UK and a representative from the MEGA team, Prof Paul Little."

So not just the three of you then?

some members of the MEGA team

which ones?

 

[Dx Revision Watch]

I submitted 2 questions 4-7 days ago and have yet had no response

Same here. No response as yet.

 

[Dx Revision Watch]

As there is going to be a Patient Advisory Group - comprising of patients, carers, other interested people, who could include clinicians and researchers.

I would think anonymizing any applications received from clinicians and researchers, or from advocacy/patient organisation reps who are not currently involved in the project would be particularly difficult.

Especially since they will not have completed their application forms with anonymity in mind. For example, when completing the section:

"Please provide a summary of the skills, knowledge, experience and qualities that you would bring to the role. We will be considering applications based on how individuals meet the stated person specification criteria so please consider this fully and include this in your summary."

 

[Dx Revision Watch]

If I were an applicant for a seat on the PAG (which I am not) I would now want to know:

if applications are to be reviewed, assessed and scored against the job spec redacted of personal identifiers, are applicants going to be offered a seat purely on the basis of their scores

or

once scores have been assigned, will their identity also be taken into account before an offer of a seat on the PAG is issued?

Also how is a balance of patient/carer/other stakeholder/advocacy org/clinician/researcher ratio for the make-up of the PAG to be achieved, if applications are redacted of personal identifiers?

 

[charles shepherd]

@charles shepherd these decisions/changes are being made too hastily, this is the first time I've heard of anonymisation of the PAG applicants.
May I ask whose idea this was?
You are asking people to raise their concerns about these last minute alterations via the (not public) MEGA contact details! How would that help when we are merely 16 hours away from the closing date for the PAG applications deadline?
It's interesting that Afme have been part of making this anonymisation decision, but applications (named) are going through them. That hardly inspires trust when Afme are already the most distrusted of our national charities

I've already explained how the decision was made and if you want to comment on this to the MEGA Team the contact details for the MEGA Team are in the public domain on the MEGA website:

http://www.megaresearch.me.uk/contact-us/

 

[Dx Revision Watch]

With the clock ticking...here's a reminder of the PAG application process schedule and the PAG task schedule:

http://www.megaresearch.me.uk/2016/12/01/patient-advisory-group-application-deadline-extended/

The timetable for recruiting the MEGA Patient Advisory Group and holding its initial meeting is now as follows:

• 9am 13 December 2016 – Deadline for applications to join the MEGA Patient Advisory Group
• 13-14 December – Applicants contacted and group members confirmed
• w/c 19 December – Papers and key information sent out to Patient Advisory Group members
• 29 or 30 December – Patient Advisory Group teleconference and/or e-group meeting held
• 4 January 2017 – Back-up call for Patient Advisory Group if needed, to address outstanding issues from December meeting.

with a view to submitting a funding application "in early January."

(If submitting to Wellcome Trust, this may need to be in by 17 January).

 

[Wildcat]

.
The Patient Representatives to the NICE Guidelines (published 2007) were named.

The Patient Representatives to the Chief Medical Officer's Working Group on ME ( CMO WG 1998-2002) were named.

It’s just not conceivable that ME patients should be represented by anonymous/unaccountable Patient Reps for the MEGA study.


@charles shepherd – you have, in these threads, talked about ‘the MEGA Planning Group’ as though such a thing actually existed.

Now it turns out there is no ‘Planning Group’, but the list of names on the MEGA list are all supposed to be ‘the Planning Group’….. when it has been made clear that some of the ‘MEGA/Planning Group’ haven’t the foggiest idea what the MEGA decision makers are doing or saying….. and its clear that somebody or other is making decisions and statements on behalf of MEGA … but its not made clear exactly who is in the driving seat …. And telling us to post our concerns onto the MEGA site has not resulted in answers to our concerns….
.
.

 

[docsimsim]

I've already explained how the decision was made and if you want to comment on this to the MEGA Team the contact details for the MEGA Team are in the public domain on the MEGA website:

http://www.megaresearch.me.uk/contact-us/

Thanks Charles, but judging by the fact that my question which I posted to the MEGA team (which is done via a form and thus the contents aren't in the public domain) last week has not even resulted in an acknowledgement of receipt, let alone a response, I doubt that my emailing them tonight about 12 hours before the deadline is going to yield any answers.
And the PAG members are to be selected by this coming Wednesday!

I'm just baffled why Afme who have reiterated that they are playing no role in the PAG selection have had a say on the issue of anonymisation? Also as they are the ones the applications go through they will be aware of the identity of the applicants yet everyone else will not be!
Let's remember that anonymity can also confer impunity. Transparency is vital when the patient community have been so badly let down through the years

I've already explained how the decision was made and if you want to comment on this to the MEGA Team the contact details for the MEGA Team are in the public domain on the MEGA website:

http://www.megaresearch.me.uk/contact-us/