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Overview

Let us know what you would be interested in getting involved with online.

  • Discussion
  • Influence

The VOICE team are currently working on putting together a series of online activity for the following weeks while everyone is spending more time at home.

We would like to know what you would like to get involved in and what content you would like to see over the next few weeks.

Please put any suggestions you have in the comments below or contact us at hello@voice-global.org

If you would like to be more actively involved in shaping our digital activities, please register at the top of the page.

We would like to hear from you Discussion

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  • Ian Fairclough
    31st March 2020

    I banged on about "cookies" - this website will explain in simple terms what cookies are and how to disable them if you don't want them on your computer.

    https://www.cookiesandyou.com/

    Ian Fairclough
    4 days ago

    Using ZOOM - please beware.

    Page 5 of the business section of the Sunday Times, dated today 5th April 2020.

    https://www.thetimes.co.uk/article/track-and-test-coronavirus-apps-raise-new-fears-over-big-techs-grip-on-personal-data-csb3705g7

  • Pamela Denham
    29th March 2020

    Lots of good ideas in the comments already. I'd be happy to help eg by commenting on proposals, answering questions, joining discussions etc. I'm also going to look at reports of past activities to refresh my ageing brain,

    VOICE Head Office
    31st March 2020

    Hi Pamela, We're also going to start sharing videos of past events which will match up nicely with your idea of looking over reports of past activities and events!

  • Ian Armstrong
    28th March 2020

    I have been a T1 Diabetic since 1966, I have NEVER been unemployed in my life ? & started work at 15. Took my last o level on the thurs afternoon & started work on the FRIDAY !

  • Ian Fairclough
    28th March 2020

    Hello - A word of warning about Zoom and sites like it.

    Although they are "free" they do put lots of "tracking cookies" on your browser, and if you study their Ts & Cs these do state that personal information is collected from you and that you are giving them your permission to use this information.

    So I suggest that you try and block these tracking cookies and clean your browser after use.

    Also, reduce the amount of "exact" personal information you give anyone online.

    Keep safe!

    Helena Kempski
    4 days ago

    Very useful to know - I must admit that I have some apprehension about using zoom and their tracking cookies. So, many thanks for sending the web link to disable them.

  • Clement O'Donovan
    27th March 2020

    I would be interested in learning more about the behaviour of a Virus in particular Coronavirus, it’s origins etc.

    VOICE Head Office
    31st March 2020

    Hi Clement, Thanks for the suggestion! I think a lot of people are interested in knowing more at this time so we will see what we can do!

  • sandy harvey
    27th March 2020

    What can I/we do to help the bigger picture - there must be something somewhere

    VOICE Head Office
    31st March 2020

    Hi Sandy, Are you interested in helping research into Coronavirus or learning more about the different volunteering initiatives that are emerging?

    sandy harvey
    31st March 2020

    Both please!

  • Angela King
    27th March 2020

    I have often hear research teams saying 'where can we find patients' to join them in shaping and generally getting involved in their projects. I'm guessing that lots of us who are registered with Voice are not only 'patients' but also people with experience of PPI. Perhaps the fact that we are having to rely more on the internet at the moment could create an opportunity for teams to flag up their PPI needs. Another possibility could be on line discussions - I think these would work on platforms like Facebook - for research teams to present outline project plans for people to give a steer on patient relevance and potential for involvement. So many funders insist on PPI - especially in applied research - and I suspect some researchers might be glad of a bit of ad hoc support. Teams could test out their ideas by setting up online surveys - e.g. survey monkey. Finally, what about setting up some Citizen Science activities?

    VOICE Head Office
    31st March 2020

    Hi Angela, if you know of anyone who needs help with PPI please point them in our direction!

  • malcolm  carlile
    27th March 2020

    Offering help to researchers/ students with their studies from a lay person's perspective or as a willing 'participant'.

    Any information regarding the science of current medical research including related technology

    VOICE Head Office
    31st March 2020

    Hi Malcolm, keep checking the weekly email for projects to get involved in, we're still getting lots of requests in from researchers about involving VOICE members online

  • Stella  Findlay
    27th March 2020

    My family have set up Teams and I FaceTime a few folk. Feels more natural and in touch.

    VOICE Head Office
    31st March 2020

    Video calls are a great way of keeping in touch. We plan to do this for some of our meetings with VOICE members.

  • Stella  Findlay
    27th March 2020

    Singing always lifts the spirits. I only use my voice in private though!

  • Stella  Findlay
    27th March 2020

    Any health issues would be interesting especially with regards to viral disease!

    Perhaps looking at students or post grads papers.

    VOICE Head Office
    31st March 2020

    Hi Stella, Thank you for your suggestions!

  • Violet  Rook
    26th March 2020

    Many organisations are now using online platforms to reach out to people or conduct meetings. Perhaps Voice could have more meetings via Zoon, Facetime or Skype this would bring the Voice community together and help the isolation situation for many.

    It is unlikely when this crisis is over that the use of such online platforms will revert, so it is a good idea to start now with the process and the use will be of great benefit at this time of major concern for the well being of many individuals.

    VOICE Head Office
    27th March 2020

    Hi Violet, Thank you for your comment. Yes we've been looking into how Teams might work for some group meetings and keeping in touch but happy to explore what VOICE members' preferences out of the selection of services!

  • Irene Soulsby
    25th March 2020

    Is it useful to have a good structure to our days, what are people doing, any suggestions (some friends have already reorganised cutlery drawer!)

  • Irene Soulsby
    25th March 2020

    Lots of good stuff online (YouTube, etc) but where to look and what's good? I'm thinking of exercise, singing, etc

  • Irene Soulsby
    25th March 2020

    I'm using ZOOM video system to keep in touch with some Uni projects, perhaps this might be an option for some things, possibly small numbers (I appreciate not everyone's cup of tea) RSG could continue that way, perhaps?

    VOICE Head Office
    27th March 2020

    Hi Irene, We've been using Teams to keep in touch as a team so we are looking into how it would work for things like the VOICE Research Support Group

    malcolm  carlile
    27th March 2020

    Hi Irene, Malcolm Carlile here. How would I go about keeping in touch with University projects as you mentioned? Thanks, Malcolm

    Irene Soulsby
    27th March 2020

    HI Malcolm, I'm on Trial Steering Committees and PPI Groups and we have started using Zoom to keep in touch (some calls have been set up by the person running the groups) We are sent an email link which allows us to join by video or telephone (via laptop, etc) It's useful as we can see presentations and keep things moving along (although a lot of projects are now on hold and researchers are getting involved with COVID-19 research) Hope that helps (you might want to suggest, depending on your involvement)

  • Irene Soulsby
    25th March 2020

    What about videos on VOICE site - exercises we can do at home (motivational) It's especially important to keep active and out minds healthy at this time

    VOICE Head Office
    27th March 2020

    Definitely! Watch this space!

  • EMDADUL ISLAM
    24th March 2020

    yes, please. I would like to learn more

  • Ian Fairclough
    23rd March 2020

    Helping students and researchers with their studies by doing online work for them.

    i.e lay summaries - surveys - opinions, etc.

    I am doing it now - the help is needed - but most students/researchers do not know we exist :(

    VOICE Head Office
    24th March 2020

    Hi Ian, if you know of anyone who needs help like that, put them in touch with us and we can help organise something for them

  • EMDADUL ISLAM
    23rd March 2020

    dealing with the current situation eg coronavirus

    how to tackle this situation

    importance of staying hygenic

    VOICE Head Office
    24th March 2020

    Thank you for your comment. Are you interested in learning more about the research into how to tackle coronavirus or ideas on how we can adapt to being at home?

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