The critics are sharpening their analogue pencils to stab me in the eye. Is this elitist, ageist and discriminatory as people who are poor can’t afford access to online services? What do you think?
I consider the fable of the child rescuing starfish. When told that there is no way she can rescue all the starfish on the beach, she says, "Yes, but it means the world to this one" as she tosses one back into the sea. No, not all people with MS will be able to access a self-management course online, but those who can will likely benefit greatly.
Go for it, but don’t abandon the MS selfie. Thanks for all the invaluable information over the years. My doctors are not up to speed and I rely on your information.
I've had some involvement with the DI sector. It's a whole industry and it all revolves around who pays. Understandably, its application has exploded during Lockdown. Businesses such as Housing Associations and Banks engage DI companies to role out IT expertise and/or equipment so that customers can use their accounts online, so they can justify investment by receiving rent or fees from people to whom they are providing a service. Easy! Government have used DI companies for many things including to ensure schoolkids have computers & broadband to enable them to access schooling remotely.
Rather than reinvent the wheel all on your own, I would recommend you hook up with established MS Charities and push for DI funding for your proposed platform. Almost by definition, pwMS have issues reaching or communicating with the world at large. Those without the means or expertise to get online and to reach the services that would benefit them should be helped to get that access. Many pwMS are housebound, so some provision for remote care must be in place.
Then comes the bit that's like walking through treacle. Whose budget? Education? Health? Which Dept? Neurology, or perhaps OH? Local or Central? Frankly, as a leading Health Practitioner in your field, and someone with an aptitude to reaching out to patients across a new medium, concentrate on the low-hanging fruit: those with funds and access to the right technology. Prove the concept, develop a first-class product and those who want to democratise the product will come to YOU. Ignore politely the armchair socialists for the time being, concentrate on product and don't give it away for free.
Finally, don't duplicate what is already in place from the likes of MSS & MST. Do it better and they might back you and use you as a lever to get funding - for you and for themselves. It's a cynical, self-serving world...
Talk to me, use me if you think I can help. Thanks to this disease I'm stuck at home with an under-utilised brain and a lifetime of business development experience!
I agree with you and I think that a very personable tailored approach to PwMS must be applied! Regarding ageing person it's very important not to stress them providing smooth and gentle advice, make them feeling comfortable and confident
Thanks, Sandy. Having disabilities that limit online access are likely to do the same with analogue content. I think this can be overcome by getting help either physically or by using add-on software tools.
As long as you do not take existing options away from people while you add new ones, this is strictly a good idea (what economists would call a pareto improvement).
It gets more tricky when we consider redistribution of resources but even then, unless you are Rawlsian (which like *all* known ethical frameworks, has issues, maybe more than many others, even), it may well be defensible.
Unless you propose to spend huge amounts of resources, I'd say go for it. It might well free up resources for the people that cannot access it!
I am not going to be doing the politics, but doing what I think needs doing with what I can have the skills and time for, i.e. helping to democratise healthcare. The politics will eventually catch up ;-)
I have just completed your online survey Prof. and would like to volunteer myself as an unpaid member of a focus group, proof reader, bog cleaner & bottle-washer. Anything really.
Hello Doctor (if you get to see this?)- I had some brief moments to contemplate about your question for a Course on MS for the average MS’r. The idea initially struck me as good, but your discussion raised many issues about what a course would look like and the obstacles of such. Here’s my current brief thinking- The word “course” puts the wrong flavor to it, in my opinion. Someone newly diagnosed doesn’t want a “course”, but they might want answers. What’s the bottom line (in my opinion)?
What is truly needed is for new or potentially new MSr’s, and then all the rest, to A: be informed of what is going on with them, AND, B: they need to make a plan, given their understanding of A. That’s really about it. For the newbies, that is a lot of work and understanding, but it is so, so needed. Not all will be able to handle it, so those won’t want it, “yet”. Nevertheless, it needs to be there for when they are ready. Adaptations can subsequently be made for disabled and elderly people, etc. An essay, submitted to expert(s), about “This is my plan for dealing with my MS, now”, would be wonderful, but such would require a lot of work by somebody (s) (?). Or just posting one’s plan and getting feedback (?). Just the reading of other's plans & feedback would be eye opening. A prerequisite to that might be digital multiple choice “testing” of understandings for each of your question areas (make it real). But very, very important; the whole thing, I think.
People who stumble into this disease need to know from the start what they could be in for, and plan for it. MS is more than two infusions a year, thinking you are cured, and then wearing an MS T-shirt. MS is the realization that the two infusions a year is not the end of one’s story. The evidence for this is all over the place. Would have been nice to have known that from the getgo. My opinion. Good Day.
It’s a big topic for a marketing guy with MS. You don’t want it to sound so easy that one thinks it’s a easy ten minutes in and out. You don’t want to scare people. You want to pull people in. You want to make a difference. You are offering something priceless, in reality. “Learn and Test Your Knowledge in Key MS areas”. “Make and Have Your MS Plan Assessed!” or simply “Submit an MS Plan”, “Submit an MS Action Plan”. ??? It's two separate relative in-depth areas dependent on each other with the 2nd being a reward for completing the 1st which is a necessity (?). Just thinking out loud.
I think it is exactly that 'elitist, ageist and discriminatory and you're asking your champagne socialists to fill in your survey and like one of your readers said if the government provided a free laptop I would be forced to sell it I have to buy my fags and alcohol somehow, not to mention the 3 bit bull terriers I have to feed Ha-ha
I can't tell if you're being sarcastic or not, I sincerely hope you are. If you aren't:
So an older or other person has no access to a (free) library and library staff that could help them access the resources needed, and/or print them as needed? (Most libraries have computers connected to the internet for free in 15 min or half hours allotments). So neurologist offices, doctor's offices, non-profits and MS clinics couldn't have paper printed copies for their older patients the same way they already do with many other resources (ours is loaded with them)? So there aren't places that provide cheap internet access and/or printing services? So no one has family, friends, or neighbors who can access the resources even on a cell phone (where these are used widely for limited internet access in many places including third world countries)? So people couldn't provide this in a community center or library? So there isnt free WiFi in many, many public places that even the cheapest, recycled, or donated cell phones (or $50 tablets) can easily surf? I guess government services, banks, and online retailers are increasingly ageist, elitist, and discriminatory, given this is the way the world is progressively going. I'm not sure the world's progress or free ready access to information can be stopped in the name of this one free course, nor do I think it's fair to pin all of that on this one free course.
There are typically other ways for folks to access these resources if they are not tech savvy, do not have devices, and don't have internet access (and often these can be free). The point is, it provides resources that can be used, printed (hopefully) and shared, even with those with no device, no internet, etc. Most recycled, refurbished, donated, and even ultra-cheap cell phones provide access routinely in third world countries, even super cheap ones often access the internet just fine these days, public free WiFi is located in many, many places, including outdoors or just outside of businesses, folks that have no cellular sometimes use them for this.
I think you comment highlights why when we co-design the course we will make sure the content is also available as a printable resource and available by post. Thanks for taking the time to comment.
Frankly the criticism doesn’t hold much merit. If they are so concerned then consider offering a mail-in paper course (small fee to cover that), or making the resources readily printable from online in addition to being online. Then MSers can have anyone print it for them and take it anywhere to get permitted. Also be sure to have alt text for images and descriptions of images for the vision impaired. Then they have nothing to belly ache about. This is a fantastic idea, anyone disagreeing with that is being petty or part of the problem rather than part of the solution; this part of the solution would suggest improvements in how to make it widely accessible, instead of attempting to stop it altogether. As an education technologist in healthcare, people afraid of change and technological futures are being terribly unrealistic. Probably, the criticism stems from those who don’t want to be called ok it when they aren’t doing an adequate job, those people will always resist accountability.
Also, anyone with a cellular phone and a little bit of data can have access, which is how internet access occurs in many places in the world where internet service would be otherwise difficult. Many places use crowd-sourced resources, where there are "stations" with shared donated computers and tablets that have (limited) internet access, or those in libraries and other facilities. Having downloadable PDF resources from online would be a wonderful boon for those who could share those resources without even the need for internet. And, sharing of resources to non-connected groups from connected groups (WiFi and Bluetooth transfer on many very cheap, donated, or recycled devices given out in various communities can work in the absence of internet).
I agree motivation/confidence is a big factor and one of the few good things bout Covid is it encouraged some people to learn zoom etc.
But I also agree that digital exclusion is still alive & kicking - sometimes due to location/signal, sometimes due to moving a lot or not having good enough credit history to get internet account, some types of disability or cognitive problems etc. So it is good to be aware of the exclusion risk of something that is on-line only.
Also some things do not work as well using mobile phones as a full sized computer/tablet screen
But it would be pointless to not offer on-line support just because a minority can't access it.
Visiting the Yorkshire Dales in August I met a man at the bus stop in Oxenholme. He assured me that I was in the right place for the bus to Sedbergh. He was on his way back from Preston where he had been using the library computer. You get an hour, he said, but at least 20 minutes of that was spent trying and waiting to log in. Then back on the train in time for the last bus home (at around 1pm). He couldn't drive any more due to worsening arthritis in his knee. He had been on a waiting list for a new hip for over a decade. Incidentally, his mother had had MS and very badly.
I mention him because he is one of he more extreme cases. From a remote rural place, working class ("I drove a wagon"), without a smartphone.
I live in London and work in the public sector with a lot of older people - all social housing tenants or leaseholders, including some in sheltered housing for those with disabilities. So this gives me a good sample size. Some have embraced technology with open arms, some (including one I'm just back from meeting) try their best and know where to ask for help if they need it. Some have a lot less confidence or willingness to learn. Some are even quite young, but haven't ever needed to use a computer and in their 50s and 60s aren't keen to start.
All can access free wifi quite easily and I would actually give many of them free equipment if they wanted it. Getting this is not actually difficult - it's easy to get a cheap or free secondhand smartphone at the very least. The problem I see is almost exclusively one of motivation. I can remove every single barrier but that one remains. I tear my hair out sometimes because I can see how much benefit they would derive from having access to the internet and knowing what to do with it!
If people are disabled by or with MS I think it's even more important for them to be online as the risk of isolation is so great.
(coincidentally, my 73 year-old mother now has a job in a public library in New Zealand where she lives. She currently spends her days helping older people get online to download and print their now-compulsory Covid passes - so that's provided some motivation that wasn't there before!)
The point I am trying to make is this a valid reason for not designing and running an online course? I suspect the same problem may exist for analogue (paper-based) or face-2-face courses as well.
I don't think it is a valid reason! And you may be right about analogue or f2f. These are problems I spend a lot of my working life thinking about and I still have no answers...
I'll add one more thing - during the pandemic we have shifted meetings online and this has driven higher participation including those who have not engaged with us before and people who may find it harder to attend a physical meeting for any one of a number of reasons - work or family commitments, disability, social anxiety, you name it. An exclusively online approach will be able to reach more people than an exclusively face to face approach. And there is help for those who cannot get online.
Not so long ago before the portable laptop arrived on the scene there were internet cafes which sold terrible coffee. Gradually the standard of coffee improved and many people then bought a laptop and 4G phones arrived on the scene. I am sure a way could be found to bring these two ideas back together again.
The post office is another venue where the internet could be made more available as well as the public library.
I am thinking of ways to combine modern technology with existing ideas and generate more traffic for the High Street. Sadly there is one proviso, the playing field will never be completely level.
Interestingly, these proposals are not far off what Jeremy Corbyn had in his manifesto before he lost so badly to BoJo.
Nowadays it is not too difficult to track and disable smartphones and computers if they are stolen or sold. Again I don't think poverty is any reason not to try and digitally enable the population for the future.
My wife works in education and runs private (fee-paying) and academy schools (free); she is adamant the COVID-19 induced widening of the educational attainment gap between private and state educated pupils would be much less if each state-school child had their own a computer and free WiFi access. In my opinion, the best way to level-up is to start by levelling up digitally.
I consider the fable of the child rescuing starfish. When told that there is no way she can rescue all the starfish on the beach, she says, "Yes, but it means the world to this one" as she tosses one back into the sea. No, not all people with MS will be able to access a self-management course online, but those who can will likely benefit greatly.
Go for it, but don’t abandon the MS selfie. Thanks for all the invaluable information over the years. My doctors are not up to speed and I rely on your information.
Hello Gavin
Regarding Digital Inclusion...
I've had some involvement with the DI sector. It's a whole industry and it all revolves around who pays. Understandably, its application has exploded during Lockdown. Businesses such as Housing Associations and Banks engage DI companies to role out IT expertise and/or equipment so that customers can use their accounts online, so they can justify investment by receiving rent or fees from people to whom they are providing a service. Easy! Government have used DI companies for many things including to ensure schoolkids have computers & broadband to enable them to access schooling remotely.
Rather than reinvent the wheel all on your own, I would recommend you hook up with established MS Charities and push for DI funding for your proposed platform. Almost by definition, pwMS have issues reaching or communicating with the world at large. Those without the means or expertise to get online and to reach the services that would benefit them should be helped to get that access. Many pwMS are housebound, so some provision for remote care must be in place.
Then comes the bit that's like walking through treacle. Whose budget? Education? Health? Which Dept? Neurology, or perhaps OH? Local or Central? Frankly, as a leading Health Practitioner in your field, and someone with an aptitude to reaching out to patients across a new medium, concentrate on the low-hanging fruit: those with funds and access to the right technology. Prove the concept, develop a first-class product and those who want to democratise the product will come to YOU. Ignore politely the armchair socialists for the time being, concentrate on product and don't give it away for free.
Finally, don't duplicate what is already in place from the likes of MSS & MST. Do it better and they might back you and use you as a lever to get funding - for you and for themselves. It's a cynical, self-serving world...
Talk to me, use me if you think I can help. Thanks to this disease I'm stuck at home with an under-utilised brain and a lifetime of business development experience!
Graeme
I agree with you and I think that a very personable tailored approach to PwMS must be applied! Regarding ageing person it's very important not to stress them providing smooth and gentle advice, make them feeling comfortable and confident
tremors for me...need software that helps use stuff...need help
Thanks, Sandy. Having disabilities that limit online access are likely to do the same with analogue content. I think this can be overcome by getting help either physically or by using add-on software tools.
like what tools? had to give up my phone can't use the buttons...aarg
Software that allows voice activation? And making the course as podcasts?
podcast would be great...voice doesn't work because i slur too much
a joystick-style mouse is useful for a lot of people who struggle with fine motor control
As long as you do not take existing options away from people while you add new ones, this is strictly a good idea (what economists would call a pareto improvement).
It gets more tricky when we consider redistribution of resources but even then, unless you are Rawlsian (which like *all* known ethical frameworks, has issues, maybe more than many others, even), it may well be defensible.
Unless you propose to spend huge amounts of resources, I'd say go for it. It might well free up resources for the people that cannot access it!
I am not going to be doing the politics, but doing what I think needs doing with what I can have the skills and time for, i.e. helping to democratise healthcare. The politics will eventually catch up ;-)
I have just completed your online survey Prof. and would like to volunteer myself as an unpaid member of a focus group, proof reader, bog cleaner & bottle-washer. Anything really.
Stanley Jackson
0778 606 4018
Stanley@agrumi.co.uk
PLEASE GO ON WITH YOUR INITIATIVES BECAUSE I LIKE AND NEED IT AS A MS PATIANT , ALBERT F.
In addition I am onboard and forward this to my inner circle, including us, MS Warriors, friends and colleagues. Many thanks pr. G!
Hello Doctor (if you get to see this?)- I had some brief moments to contemplate about your question for a Course on MS for the average MS’r. The idea initially struck me as good, but your discussion raised many issues about what a course would look like and the obstacles of such. Here’s my current brief thinking- The word “course” puts the wrong flavor to it, in my opinion. Someone newly diagnosed doesn’t want a “course”, but they might want answers. What’s the bottom line (in my opinion)?
What is truly needed is for new or potentially new MSr’s, and then all the rest, to A: be informed of what is going on with them, AND, B: they need to make a plan, given their understanding of A. That’s really about it. For the newbies, that is a lot of work and understanding, but it is so, so needed. Not all will be able to handle it, so those won’t want it, “yet”. Nevertheless, it needs to be there for when they are ready. Adaptations can subsequently be made for disabled and elderly people, etc. An essay, submitted to expert(s), about “This is my plan for dealing with my MS, now”, would be wonderful, but such would require a lot of work by somebody (s) (?). Or just posting one’s plan and getting feedback (?). Just the reading of other's plans & feedback would be eye opening. A prerequisite to that might be digital multiple choice “testing” of understandings for each of your question areas (make it real). But very, very important; the whole thing, I think.
People who stumble into this disease need to know from the start what they could be in for, and plan for it. MS is more than two infusions a year, thinking you are cured, and then wearing an MS T-shirt. MS is the realization that the two infusions a year is not the end of one’s story. The evidence for this is all over the place. Would have been nice to have known that from the getgo. My opinion. Good Day.
Great comment! Thank you.
So may be we should call it something else. Instead of a course how about 'Getting to understand and write your own MS plan'?
Marketing gal or guy.
It’s a big topic for a marketing guy with MS. You don’t want it to sound so easy that one thinks it’s a easy ten minutes in and out. You don’t want to scare people. You want to pull people in. You want to make a difference. You are offering something priceless, in reality. “Learn and Test Your Knowledge in Key MS areas”. “Make and Have Your MS Plan Assessed!” or simply “Submit an MS Plan”, “Submit an MS Action Plan”. ??? It's two separate relative in-depth areas dependent on each other with the 2nd being a reward for completing the 1st which is a necessity (?). Just thinking out loud.
I think it is exactly that 'elitist, ageist and discriminatory and you're asking your champagne socialists to fill in your survey and like one of your readers said if the government provided a free laptop I would be forced to sell it I have to buy my fags and alcohol somehow, not to mention the 3 bit bull terriers I have to feed Ha-ha
I can't tell if you're being sarcastic or not, I sincerely hope you are. If you aren't:
So an older or other person has no access to a (free) library and library staff that could help them access the resources needed, and/or print them as needed? (Most libraries have computers connected to the internet for free in 15 min or half hours allotments). So neurologist offices, doctor's offices, non-profits and MS clinics couldn't have paper printed copies for their older patients the same way they already do with many other resources (ours is loaded with them)? So there aren't places that provide cheap internet access and/or printing services? So no one has family, friends, or neighbors who can access the resources even on a cell phone (where these are used widely for limited internet access in many places including third world countries)? So people couldn't provide this in a community center or library? So there isnt free WiFi in many, many public places that even the cheapest, recycled, or donated cell phones (or $50 tablets) can easily surf? I guess government services, banks, and online retailers are increasingly ageist, elitist, and discriminatory, given this is the way the world is progressively going. I'm not sure the world's progress or free ready access to information can be stopped in the name of this one free course, nor do I think it's fair to pin all of that on this one free course.
There are typically other ways for folks to access these resources if they are not tech savvy, do not have devices, and don't have internet access (and often these can be free). The point is, it provides resources that can be used, printed (hopefully) and shared, even with those with no device, no internet, etc. Most recycled, refurbished, donated, and even ultra-cheap cell phones provide access routinely in third world countries, even super cheap ones often access the internet just fine these days, public free WiFi is located in many, many places, including outdoors or just outside of businesses, folks that have no cellular sometimes use them for this.
Sorry ,you lost me on the first sentence What is a library?
I think you comment highlights why when we co-design the course we will make sure the content is also available as a printable resource and available by post. Thanks for taking the time to comment.
Frankly the criticism doesn’t hold much merit. If they are so concerned then consider offering a mail-in paper course (small fee to cover that), or making the resources readily printable from online in addition to being online. Then MSers can have anyone print it for them and take it anywhere to get permitted. Also be sure to have alt text for images and descriptions of images for the vision impaired. Then they have nothing to belly ache about. This is a fantastic idea, anyone disagreeing with that is being petty or part of the problem rather than part of the solution; this part of the solution would suggest improvements in how to make it widely accessible, instead of attempting to stop it altogether. As an education technologist in healthcare, people afraid of change and technological futures are being terribly unrealistic. Probably, the criticism stems from those who don’t want to be called ok it when they aren’t doing an adequate job, those people will always resist accountability.
Also, anyone with a cellular phone and a little bit of data can have access, which is how internet access occurs in many places in the world where internet service would be otherwise difficult. Many places use crowd-sourced resources, where there are "stations" with shared donated computers and tablets that have (limited) internet access, or those in libraries and other facilities. Having downloadable PDF resources from online would be a wonderful boon for those who could share those resources without even the need for internet. And, sharing of resources to non-connected groups from connected groups (WiFi and Bluetooth transfer on many very cheap, donated, or recycled devices given out in various communities can work in the absence of internet).
*called on it when they aren’t doing an adequate job.
Also, printable would allow MS clinics to have printed materials for newcomers, something I’m sure many places would welcome.
I agree motivation/confidence is a big factor and one of the few good things bout Covid is it encouraged some people to learn zoom etc.
But I also agree that digital exclusion is still alive & kicking - sometimes due to location/signal, sometimes due to moving a lot or not having good enough credit history to get internet account, some types of disability or cognitive problems etc. So it is good to be aware of the exclusion risk of something that is on-line only.
Also some things do not work as well using mobile phones as a full sized computer/tablet screen
But it would be pointless to not offer on-line support just because a minority can't access it.
Visiting the Yorkshire Dales in August I met a man at the bus stop in Oxenholme. He assured me that I was in the right place for the bus to Sedbergh. He was on his way back from Preston where he had been using the library computer. You get an hour, he said, but at least 20 minutes of that was spent trying and waiting to log in. Then back on the train in time for the last bus home (at around 1pm). He couldn't drive any more due to worsening arthritis in his knee. He had been on a waiting list for a new hip for over a decade. Incidentally, his mother had had MS and very badly.
I mention him because he is one of he more extreme cases. From a remote rural place, working class ("I drove a wagon"), without a smartphone.
I live in London and work in the public sector with a lot of older people - all social housing tenants or leaseholders, including some in sheltered housing for those with disabilities. So this gives me a good sample size. Some have embraced technology with open arms, some (including one I'm just back from meeting) try their best and know where to ask for help if they need it. Some have a lot less confidence or willingness to learn. Some are even quite young, but haven't ever needed to use a computer and in their 50s and 60s aren't keen to start.
All can access free wifi quite easily and I would actually give many of them free equipment if they wanted it. Getting this is not actually difficult - it's easy to get a cheap or free secondhand smartphone at the very least. The problem I see is almost exclusively one of motivation. I can remove every single barrier but that one remains. I tear my hair out sometimes because I can see how much benefit they would derive from having access to the internet and knowing what to do with it!
If people are disabled by or with MS I think it's even more important for them to be online as the risk of isolation is so great.
(coincidentally, my 73 year-old mother now has a job in a public library in New Zealand where she lives. She currently spends her days helping older people get online to download and print their now-compulsory Covid passes - so that's provided some motivation that wasn't there before!)
Thanks for the comment; much appreciated!
The point I am trying to make is this a valid reason for not designing and running an online course? I suspect the same problem may exist for analogue (paper-based) or face-2-face courses as well.
I don't think it is a valid reason! And you may be right about analogue or f2f. These are problems I spend a lot of my working life thinking about and I still have no answers...
I'll add one more thing - during the pandemic we have shifted meetings online and this has driven higher participation including those who have not engaged with us before and people who may find it harder to attend a physical meeting for any one of a number of reasons - work or family commitments, disability, social anxiety, you name it. An exclusively online approach will be able to reach more people than an exclusively face to face approach. And there is help for those who cannot get online.
Of course not.
It's like saying you can't have a phone Hotline because the deaf, socially anxious or phoneless can't readily use it.
Hello,
Not so long ago before the portable laptop arrived on the scene there were internet cafes which sold terrible coffee. Gradually the standard of coffee improved and many people then bought a laptop and 4G phones arrived on the scene. I am sure a way could be found to bring these two ideas back together again.
The post office is another venue where the internet could be made more available as well as the public library.
I am thinking of ways to combine modern technology with existing ideas and generate more traffic for the High Street. Sadly there is one proviso, the playing field will never be completely level.
Interestingly, these proposals are not far off what Jeremy Corbyn had in his manifesto before he lost so badly to BoJo.
Nowadays it is not too difficult to track and disable smartphones and computers if they are stolen or sold. Again I don't think poverty is any reason not to try and digitally enable the population for the future.
My wife works in education and runs private (fee-paying) and academy schools (free); she is adamant the COVID-19 induced widening of the educational attainment gap between private and state educated pupils would be much less if each state-school child had their own a computer and free WiFi access. In my opinion, the best way to level-up is to start by levelling up digitally.