Pernicious Anaemia online priority setting workshop: your needs and interests

 

What would we like you to do?

The James Lind Alliance would like everyone taking part in the online workshop on Pernicious Anaemia to complete this short questionnaire. Please fill in this form by 29th October 2021.

Why?

The James Lind Alliance will be facilitating the online workshop and we want everything to be open and transparent. We are asking these questions to help us to work effectively with you, in a workshop that is inclusive and respectful of all participants, and to help us make it as straightforward as possible for you to take part. This questionnaire asks about any special requirements you may have before or on the day.

The aim of this questionnaire is also to ensure the following:
• confirmation of shared goals and values
• confirmation of agreement to work with everyone else at the workshop respectfully
• transparency about any competing interests.

Please answer the following questions:

We will send you the workshop papers in the post prior to the workshop. What is your postal address?

What phone number can we contact you on during the workshop, in case there is a problem with the internet connection?

The James Lind Alliance’s goal is to work with people who have experience of Pernicious Anaemia and healthcare professionals as equal partners in the process. They will work together to discuss and agree priorities for research on Pernicious Anaemia.

The James Lind Alliance asks that everyone who participates in the online priority setting workshop works together respectfully and supportively.

e.g. you have campaigned about an issue

Please provide a short biography (up to 100 words) describing your interest in/experience of Pernicious Anaemia. This, and your name, will be shared with everyone participating in the workshop as people attending workshops often like to have a small amount of information about each other. Please only write down any information that you are comfortable with other people at the workshop reading.

eg large print, adjustments for colour vision deficiency/colour blindness

We will capture screenshots (photos of the screen) during the workshop as a record of the day. All names will be removed/redacted from the images. Do you agree to being in these group photographs and to the photos being used in print and online when publicity about the research priorities is created? We will not list your name in any report or publicity.

Privacy Notice

The information you provide on this form will be used by the James Lind Alliance and the Pernicious Anaemia Society to ensure that on the day of the workshop we provide for your requirements, ensure you share the goals and values of the day and identify any potential conflicts of interest.

Your name and biography information will be shared with The James Lind Alliance and everyone attending the workshop. The James Lind Alliance and Pernicious Anaemia Society will not share details of how to contact you with anyone else without asking for your permission first.

The Pernicious Anaemia Society will hold the personal details that you have given us on this form and data you provided us with until 1st March 2022. After that, we will delete them from our records.

If you have any queries, please contact psp@pasoc.org.uk.

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