I’ve just had an email about this study and now found it appears to be a government study. In fact it’s shown on the Government portal. I’m a bit puzzled as my email states it’s NRAS interested in going forward with technology so how will my information be used, stored, who is it being passed on too etc. I’m sorry but shall not be responding to assist the government in yet more cut backs. I feel that mobile phones are great for communication but should not be used to inform, or drive any decisions based on AI ? I’d assume algorithms. It’s a sad day when my phone might become my consultant. Plus if like me with more than one major health issue I’m not sure it’s even safe. I’ve no idea but worry this type of study could lead us further down the route of fewer services being sold to us under a banner of self empowerment. I’ve no problem with direct access to the PLI at my hospital if it works as promised but this type of study needs to be discussed by the clinician with patient as too suitability and understanding it’s impact. I’m waiting to see if the promised 4/6 week availability of consultant appoitment actually materialises under the Urology Patient Lead Initiative materialises. So thank you for the invite but no I shall not participate.
Cohesion Study: I’ve just had an email about this study... - NRAS
Cohesion Study
I would be leery if it is led by this government. They are selling us pensioners down the river as they don't care about us oldies or all of us on here who are chronically ill. xxx
If you look them up on companies house they aren’t even a big company but a small private one. It actually states on the website, which is very glossy but it’s informing NHS for better cost effective outcomes. I’m a natural sceptic but suggest that people read their blurb before making up their mind wether to be a participant.
I no longer trust a word the government, the media or the NHS say.
There is a saying that the personal is political. Everything about our lives is political. Our treatment depends on funding. But how that funding is distributed and used is political. It seems there is ample money to spend on experimental, harmful surgeries but the line we are fed is that smoking is the big drain.
Yet we can't talk about what's really going on here because our voices are stifled. So I spend most of my time on X where the truth can be exposed and it's shocking. And of course the authorities are desperate to shut it down.
Perhaps we all need to get offline and meet up in person where we can speak freely.
I'm afraid I am the same regarding your first paragraph.
Ditto!
I read those surveys, but never contribute. As you say…if they are Government run they will be financially not clinically focussed.
It looks like cohesion is a company who have applied for, and won, a contract to provide tech to the nhs. I'm guessing the survey is a market research piece to help them design the tech.
My thoughts too but I did look it up on You Tube as well. I'm not against AI at all but think I'm not giving personal details out before seeing the questions nor am I sending medical details to a third party being unaware of where that information is being kept , if its being passed on, or who might have access to it. This company admins Patients Know Best which my hospital uses, it works well and it can be used to store medical notes, correspondence and upload symptoms but it's direct patient to hospital. I just wish NRAS explained things a lot better as its just not clear.
those that are taking part in the NRAS app are working with their provider and they are called COHESION based on Scotland. The app is wonderful and they have been a great team to work with on this app. Be interesting to know if same company which I would expect it to be as they are trying to work more with the NHS I believe.
Dear Medway Lady, I'm afraid you have got things rather wrong. The email which you received from NRAS over the weekend is one of a few hundred emails we sent out (which most of the people on here will not have received and therefore not understand what you are referring to) because we are looking to recruit a few more people to be involved in a study which NRAS is undertaking (nothing to do with government) and for which we already have over 70 volunteers currently working with us. We simply wanted to get the numbers up to approx. 100 volunteers. This work follows on from a digital rheumatology project which we have worked on in Scotland in collaboration with the developer of a new version of the Citizen Health Wallet, called NRAS Health Wallet, which ended at the end of 2023 and was funded by the Health Foundation. If you had clicked on the links in the email, you would have been taken to the information sheet giving you all the details about this NRAS work and why we are doing it. I can only assume that you didn't click on the link and read the additional information. To everyone who has replied to in this chain, please be reassured this is an exciting NRAS study to look at how a flexible and comprehensive smart phone app for people with RA can help them to monitor and manage their symptoms between appointments with their team. We have spent 2 years on a study in Scotland (2022/23) looking at how to build trust and communication between patients and their healthcare team using this technology and with good results. We're now doing some further work in this space. If anyone wants more information, please email enquiries@nras.org.uk
Thank you for responding and I did read all the information and the Medical Cohesion Initiative is listed on the government website, with its link to Patients Know Best used by my hospital. It’s the same company directors so I’m not wrong. The error is not making it clear because it’s not explained is who is going to see the information, how will it be stored and what will it inform. I actually did look up all the listings for the company Medical Cohesion as shown on the heading with its links too. To what purpose is this information being used. To inform what? It isn’t clear and definately states on the companies website it’s purpose is to reduce costs.The Patients Know Best has these features so it appears similar but as I said I can’t see the questions without giving personal information. So can you look up the original invite, it’s You Tube post and the links to the company and advise is this to be passed to a private company looking for an NHS contract as it does say one area of interest to them on their website is Rheumatology. I just don’t believe it’s right to provide any medical information without knowing where it’s going to go as once out there, it’s there for good and as I said I can’t see what information your looking for nor if it can be distinguished between RA and other co morbidities. If this is going to inform a PLI then I’d like to know how the NRAS is going to use personal information.
Where in Scotland was this study held, how many respondents, where can we access their report?
Hello Hatshepsut, the study was project managed by Health Improvement Scotland and ran with approx. 70+ volunteers using the Citizen Wallet which was connected to 3 NHS sites at Lanarkshire, Forth Valley and Newcastle as well as NRAS, Community Pharmacy Scotland and Highland Hospice. A report was produced by HIS for the funder - the Health Foundation - and the partners in the study. The report was not required or intended to be put into the public domain. We did a final presentation to the Health Foundation end November 2023 who were very happy with the outcomes. We (HIS and the various partners in the study) were one of 4 teams across the UK that the Health Foundation/QLAB funded over 2 years to do work to develop the use of digital technology in remote monitoring in different health areas. The work we are now doing in partnership with Cohesion is following on from the above work.
I'm afraid, with respect Medway-lady, you are incorrect. Cohesion have nothing whatsoever to do with Patients Know Best who are a completely different organisation and Cohesion have nothing to do with your hospital. Neither are their Directors anything to do with PKB. This is absolutely incorrect information and I must ask you to accept that you are mistaken in your posts above. Also the NRAS email you received quite clearly states that this is an 'expression of interest' enquiry. Anyone filling in the expression of interest form will be sent a Patient Information Sheet explaining exactly what the study is about in much more detail, who will see your information, how it will be stored and what we intend to do with it. We are rigorously adherent to all GDPR requirements in regard to information we and our research partners hold. I would respectfully request that you stop posting incorrect information about the collaborative study we are doing in partnership with Cohesion who are listed on the UK government’s GCloud14 National Framework for procurement by NHS services as are 1000s of businesses big and small, but this has nothing to do with this NRAS study. We choose our research partners very carefully and have worked creatively and successfully with Cohesion for 5 years.
I did not have an expression of interest but an invite to be involved. I filled in the details to see where it took me but could go no further it ended. The expression of interest on the second page required my details but says nothing about being sent information. It is about suitability not security. I’m glad that you’ve clarified that the involvement of NRAS members is not informing Cohesion Medical to aid its commercial interest. I regret that I have confused the issue but saw the details of Medical Cohesion on the government NHS website as you are aware is listed which did match those of the Company on your header. Thus the same company I did not mean to mislead that Medical Cohesion was the same as PKB that is my error but that it is the same type of monitoring using AI? My hospital uses PKB which is a similar platform but it’s not monitored. And no third party is involved. As you’ve now clarified that the NRAS is not connected to Medical Cohesion Ltd being used to monitor RA for the NHS to reduce costs, it is a very different situation. I understand that and wish your study well.
Diet and RA
Will they change my biologics?
today's the day......
The doctor patient relationship should be a partnership
Question about codeine.
