It seems that as it becomes much more difficult to access help and support 1:1 and face to face as most of us have been used to and prefer because of shortages - access to digital resources is going to become much prominent.
The study I and several other forum members have been participating in is trying to prioritise what both patients and medics feel are priorities. As you may imagine we don't always agree and going through this process is thought provoking, revealing and educating.
Please note the criteria for enrolling.
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CDreamer
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The AFFIRMO WP4 study with Trudy Lobban has finished, but the AFFIRMO app study I think is still running. I posted here about the word "concomitant" in the app which is fine if you are a clinician, but is hardly in everyday use by us lay people (I expect that Melvin Bragg uses it though).
Good point - having just looked it up not sure my statistical theoretical knowledge is quite up to that but I sort of get what they are doing. Were you aware of the Manchester Uni study as well? Info on the AA site here
Yes, I am aware of the Manchester University study, as that's the one about the phone app. I was the only lived-experience participant in the last Zoom meeting with Manchester University. The use of a phone app fitted with my published evidence (on the Web site at the moment) to the House of Lords Digital Exclusion Inquiry. You can't assume that everybody has a phone or that it is compliant with an app. The Public Accounts Committee Inquiry into protecting the vulnerable during COVID, states that 800,000 people could not be contacted to advise them to shield. I was designated clinically extremely vulnerable, but although that should have happened in March, I received a letter in November.
Two related points. Select Committees frequently call for evidence, and it's a great way to get your views to Government and many people. The Inquiry published report is also covered by the mainstream press. Secondly, belonging to a health body means that you will hear of studies that need lived-experience participants. I belong to Bristol Health Partners Stroke HIT, organised by Bristol University.
I agree that we can’t assume everyone has a phone or wants to use apps but as more and more of our lives move into cyber space I think there is a danger if one doesn’t embrace the tech then there will be many who are disenfranchised.
Can you give us a link to the published evidence on the website?
Let me know if it doesn't work, as there is a convoluted route from the Lords Committee web page. I've been published by other Committees - I think it's twice by the Public Accounts Committee (PAC) - and it's a bit odd to see your name listed with Professors and major organisations. There were quite a few of us ordinary people whose written evidence was published by the PAC Inquiry into the DVLA backlog. It was great that tucked away in the text, was a comment that disabled people may have a case against the DVLA for discrimination.
Excellent summary. Would you mind if I plagiarised some of your written evidences?
My husband and I recently moved to what is now referred to as an Integrated Retirement Community who are trying to digitise everything but we are in an area of particularly low 3/4G coverage which means it's really hard to have a telephone conversation. We are however lucky in that we are a new complex completely Fibre so have excellent WiFi - when the electrics are on. We have frequent outages, the longest since we arrived (last May) was about 48 hours.
Unlike the copper system which allow you to make calls and is about to be turned off, telephones do not work with no electricity.
So .....in a power outage you will need a mobile to call emergency services - but the signals are so low you may find your house burned down before you can find a spot to get a signal. 🤷♂️
Thank you for your kind comments. By all means use my submission privately. I checked the rules for submissions published by Select Committees and I've pasted the following extract:
"Evidence which is accepted by the Committee may be published online at any stage; when it is so published it becomes subject to parliamentary copyright and is protected by parliamentary privilege. Submissions which have been previously published will not be accepted as evidence. Once you have received acknowledgement that the evidence has been accepted you will receive a further email, and at this point you may publicise or publish your evidence yourself. In doing so you must indicate that it was prepared for the Committee, and you should be aware that your publication or re-publication of your evidence may not be protected by parliamentary privilege."
The restriction is mostly placed on me (to retain parliamentary privilege), but an extract submitted elsewhere by me or someone else would need a citation. Interestingly, Select Committees will publish submissions on their web site but not inform the person making the submission. In my experience, you will receive an email 24 to 48 hours before it is officially published, and it will enclose a watermarked embargoed copy of the report. The media also receive an embargoed copy at the same time. The embargo ceases at one minute past midnight on the designated day, so you can email a letter to various newspapers at say five minutes after midnight. Parliamentary privilege is a blessing, as you can truthfully write what you might otherwise have withheld. That was the case in my submission to PAC about the DVLA backlog.
I agree. Some of the choices were difficult, such as ability to exercise. Does that mean walking a mile, or a gym class? The definitions can be a bit blurred with AF. With stroke Zoom sessions there are firmer views. I realised recently and apologised, that I hadn't considered carers. That led to an email discussion with the clinical lead for Sirona, and a much better understanding. All of us would be much poorer without the time and effort of Health Unlocked, the Stroke Association, and organisations such as Bristol Health Partners. Thank you.
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