FORWARD ME GROUP: Minutes for the meeting held at the House of Lords on December 7th 2016

[Dx Revision Watch]

Could Dr Shepherd please clarify who is representing the patient organisations in SC's absence?


According to the revised MEGA timeline papers and key information were scheduled to be sent out to the PAG during week beginning 19 December.

On 29 or 30 December, a PAG teleconference and/or e-group meeting is scheduled.

On 4 January 2017, a back-up call for the PAG (if needed) has been scheduled to address outstanding issues from the December meeting.

Has it been agreed yet with the PAG whether there is going to be transparency regarding the membership of the PAG?

When does MEGA anticipate releasing the membership list?

 

[docsimsim]

Could Dr Shepherd please clarify who is representing the patient organisations in SC's absence?


According to the revised MEGA timeline papers and key information were scheduled to be sent out to the PAG during week beginning 19 December.

On 29 or 30 December, a PAG teleconference and/or e-group meeting is scheduled.

On 4 January 2017, a back-up call for the PAG (if needed) has been scheduled to address outstanding issues from the December meeting.

Has it been agreed yet with the PAG whether there is going to be transparency regarding the membership of the PAG?

When does MEGA anticipate releasing the membership list?

Do we know who's taking part in the teleconference? Apart from the PAG members? It's quite unclear, who will be chairing it? Are @charles shepherd/MEA taking part? Tx

 

[Dx Revision Watch]

Do we know who's taking part in the teleconference? Apart from the PAG members? It's quite unclear, who will be chairing it? Are @charles shepherd/MEA taking part? Tx

Good Qs, @docsimsim. To which I would add (plus those in #41) are the virtual meetings of the PAG going to be minuted and published?

 

[Dx Revision Watch]

http://forums.phoenixrising.me/inde...year-update-from-the-uk-me-cfs-biobank.48525/

END OF YEAR UPDATE FROM THE ME/CFS BIOBANK

from Dr Charles Shepherd

 

[charles shepherd]

Apologies for the delay in responding to these queries about MEGA and PAG but I have spent most of Xmas week in bed with a nasty chest and throat infection and am trying to avoid doing social media - unless it's urgent

My involvement with the MEGA PAG has been limited to the selection process and spending a day going through the 45 applications to join the group

I am not a member of the PAG and do not have any other role in its administration

My understanding is that the first PAG teleconference meeting took place yesterday

And I am not involved in the administration of the MEGA application

While Sonya Chowdhury is away over Xmas and New Year any queries relating to PAG or the charity input to MEGA should be sent to Claire Ogden at AfME

Claire is in regular contact with both myself and MERUK and can discuss with us, if necessary

 

[Dx Revision Watch]

Apologies for the delay in responding to these queries about MEGA and PAG but I have spent most of Xmas week in bed with a nasty chest and throat infection and am trying to avoid doing social media - unless it's urgent

My involvement with the MEGA PAG has been limited to the selection process and spending a day going through the 45 applications to join the group

I am not a member of the PAG and do not have any other role in its administration

My understanding is that the first PAG teleconference meeting took place yesterday

And I am not involved in the administration of the MEGA application

While Sonya Chowdhury is away over Xmas and New Year any queries relating to PAG or the charity input to MEGA should be sent to Claire Ogden at AfME

Claire is in regular contact with both myself and MERUK and can discuss with us, if necessary

Thank you for clarifying, Dr Shepherd, and I hope you are feeling a lot better.

 

[Dx Revision Watch]

It's now 6 January.

The PAG has presumably been operating since week beginning 19 December.
Presumably, teleconference or e-group meetings were held towards the end of the year.
A back-up call (if required) was scheduled for 4 January "to address outstanding issues from the December meeting".

It was anticipated that an application for funding was being submitted to (an as yet unconfirmed) funder in "early January".


There is nothing on the MEGA website to clarify:

whether PAG members have agreed that the PAG should be transparency regarding its membership;
when MEGA will release the membership list if the PAG has agreed to full or selective transparency;
who chairs the PAG;
who else participates in PAG meetings in addition to PAG members and the chair;
whether summaries of PAG virtual meetings will be published and when.

 

[trishrhymes]

Have minutes or membership of any PAG ever been published for other research proposals? Don't think I've ever come across any.

Much as I'd like to know more, I suspect we won't see anything. They have probably had to sign some sort of confidentiality agreement.

I imagine details of research funding applications are treated as confidential because they will be competing with other applicants for funds.

This is all speculation. I have no involvement with this or any other research.

 

[Dx Revision Watch]

Have minutes or membership of any PAG ever been published for other research proposals? Don't think I've ever come across any.

Much as I'd like to know more, I suspect we won't see anything. They have probably had to sign some sort of confidentiality agreement.

I imagine details of research funding applications are treated as confidential because they will be competing with other applicants for funds.

This is all speculation. I have no involvement with this or any other research.

In answer to:

"NEW QUESTION Does the MEGA Team intend to publish the names of those who have accepted a seat on the Patient Advisory Group and by what date does MEGA anticipate publishing the confirmed membership list?"

The response from MEGA was:

"We will discuss this with the Patient Advisory Group and publish names if they are willing for us to do so."

 

[Dx Revision Watch]

There's a

NIHR Research Design Service (RDS) patient and public involvement (PPI) Handbook

here (though not had time to skim it)

http://www.rds.nihr.ac.uk/wp-content/uploads/RDS-PPI-Handbook-2014-v8-FINAL.pdf

Patient and public involvement in health and social care research: A handbook for researchers

 

[Cinders66]

Which individuals are working with patients on the PAG then ?

 

[Dx Revision Watch]

Which individuals are working with patients on the PAG then ?

Currently unknown.

As far as I am aware, MEGA has published no details about which members of the MEGA Team (which MEGA has confirmed is not a Steering Group) will be interacting with the PAG.

It's not known who chaired the e-group meetings over Christmas and New Year or who else was involved in the initial discussions and virtual meetings with this newly assembled PAG or whether there is anyone acting in the role of facilitator for PAG participation.