One of the biggest challenges we face in the management of MS is the timely transfer of information in a format that is easy to understand. Do you have any solutions?
Feb 15, 2022·edited Feb 15, 2022Liked by Gavin Giovannoni
Data privacy is a huge concern, regardless if this is a made up scenario or not… People should consider sharing this kind of data very, very carefully. Another comment I would make is that anything that goes through Google wouldn't get any data from me, because Google cares not about anyone's privacy, quite the opposite. As usual, it would entirely depend on who made the app and what the data privacy contract is like, (and whether or not it is a policy that people can actually understand without having a lawyer present).
The convenience and immediacy is nice, but having been a Technologist who has studied the social implications of technology in my masters (and considered a PhD in it with approved samplings before MS made that unfeasible], I can firmly say that'd all technology comes at a significant cost. People always look at the shininess of the convenience and benefits, and not at the losses, some of which only become profoundly apparent a decade or more later... as we can see unfolding with social media being used to interfere with elections in the west. It would be wise to deeply consider how such a platform could go wrong, could be co-opted, or could be problematic if the data were't perfectly secure, and what costs it could potentially have for its users, not at the outset but years down the line. The same applies to wearables that track sleep, exercise and other data that could be used against someone in ways not yet imagined, without deep thought. Insurance companies inThe US asking users for this data for "cheaper rates" for those who stay fitter, should be a gravely concerning example.
Oh gosh, no surprise so many of us thought it was about a real service, I'll speak for me alone,
Why the heck are we not building this service?
Why the heck are we stuck with a 1953 health care provider model in the UK?
We really believed this service existed and many of us are still coming to terms with the fact UK healthcare provision in the 21st century has somehow got stuck in 1953
The service or app seems to address the big stuff we need as well as the big stuff healthcare professionals might need..
We clearly lack professionally curated, targetted, accurate information about the disease and treatment , diet or lifestyle/activity options
- especially info targetted to our specific current individual experience of this multifaceted unpredicatable disease and potential future paths - this would solve much of that..
yeah it's all on the internet..
bit like that needle I'm looking for is in the haystack ! So how much of this internet searching returns accurate evidence based info?
How much could a patient be expected to research every paragraph on every site?
How much could we be objective.. or eliminate our bias, ignore our emotional drivers, set aside the pain or fear... to mindfully digest and act on the appropriate information in an appropriate manner?
And yah, MS trust is fab, OMS likewise, National MS society, but they're all largely aggregators that simplify and present information from others.. as well as that the patient needs to know their needs (pause and think how many of really do know.. we have little to no genuine evidence much of the time) and be able to navigate and understand and evaluate multiple sets of complex information at volume.. then reach a correct decison, even at the last it's all for nowt if we do not have the wil/means/capacity to act on it..
We clearly lack real time evidence based health measures
- devices to do this are now affordable and available through the 'internet of things' or in this case probably a smartwatch to monitor and record multiple systems while automatically sending to a database.. databases can be secure and accessible to those that need access
Healthcare professionals are human and work in a dysfunctional system
- every forum is a series of heartbreaking questions from people after diagnosis who have health care teams, asking things likewhen should I have an MRI, is there any medicine for spasms and so on, I've been offered aubagio as my only choice.. somewhere between what the guidance is what is delivered there are large, life changing gaps..
Health care professional are not (all) good coaches
- yes some coach, and even better a few are genuinely good at it..
there are already well used coaching systems through online services and if we dare admit, games. advertising and scial networks that create positive behavioural change
Social support, we used to call them 'friends', haha
- it's so much better when we're not on our own, again the systems already exist and are in mass use for so much else.. there are a few atempts in the MS world, but it's all so haphazard and takes a lot of savvy or prior experience from the patient to gain meaningful interaction or benefit
Performance measurement and patient awareness of that performance
- Yesssss, surely one of the sinking stomach realisations as a patient is when asking a question about your hospital or care team on a forum, multiple folks pop up and say, oh yes they're hopeless just keep on trying..
Not that anyones doiung a bad job or wakes up wanting to be an awkward unhelpful person, but at least where it is happening support could be given to improve and adopt best practice from other trusts or teams, it's about targetting support and help to get better outcomes.. not people ;)
MRI's - We clearly lack access and understanding of what they mean, besides blood tests and subjective experience they are literally the only evidence most of us have
- Why isn't there a central MRI repository that we can access?
Why isn't there analysis we could access, it's heartbreaking to realise no ones looking at an MRI and the anlysis can miss things
In comments there are lots who like me thought this was a real app and plenty of areas to explore and fear and reasons 'why not' to address - I think they're addressed above - but in short should it not be clear..
- Many people cannot use or have reliable access to a connected online device, yes there would need to be offline routes for those folks to access the service or supported use, this is normal for non commercial services and entirely achievable - letters are still sent, face to face appintments still happen - some of the things the NHS does overly well ;)
- Data privacy, there are already secure networks and systems that keep data securely and allow access only on aneed to know basis. Google is not involved. A problem is a lack of accurate data and a lack of formatting, access and analysis of data to generate useable insight that will imporve care practice and medicine..
- Most people will not have real time or any meaningful access to health tracking devices - The devices exist already that need close to, or zero patient input and can be distributed and maintained easily and cheaply
I'll stop, although there's much much more..
Lets support decent effort through initiatives like this from Dr G
It's about saying 'why not' because if we keep on questioning 'why', we'll just get more of the same and the outcomes that creates.. will continue to create.. for us, our families, friends , colleagues, and countless unknown others
On that note, how might I help beyond this effort beyond completing the survey?
I really like the idea of this app. But I believe it all starts with the patients "self-efficacy." Have they tapped into their Why and aligned those values with their lifestyle? I think a coaching app is the future. Like Kit said, all that info is already accessible on the Internet. A ton of info is already there. There is no longer any excuse to be uninformed. Same with research. It's all there, easily accessible. But with this info, the patient needs to act. And act sustainably, with joy and vision. Acting out of fear and deprivation / desperation is not sustainable.
MS has shown me how inadequate the US system is for chronic conditions. It truly is a "disease care" system looking for the silver bullet which will allow people to remain on SAD and SAL while taking one pill (note: SAD = standard american diet; SAL = standard american lifestyle). SAD and SAL don't work. The data bears that out. As a PWMS, I'm an increasingly convinced that effective management is leading an anti-oxidant, anti-inflammatory lifestyle. (ie mouth, feet, sleep, stress, social). That's it. I rarely think of MS, but I think of my lifestyle constantly, to make sure that it is intentional and as healing as possible. And all of this will lead to an incredible Placebo Effect too. With no negative side effects. And it's super economical and life affirming. Tech is not the answer. Lifestyle change is. How do we use tech to promote lifestyle change, c'est la question, non?
Why can tech NOT be used to reaffirm these lifestyle changes? Some people, with or without MS are so wrapped up in their tech, that an app to prompt them to make certain changes in diet and exercise as well as other things in their lifestyle that is wrong and help them track this daily, the way a smart watch or other device sorta does, could be very helpful for a lot of people. For me, I can't remember what day it is half the time, let alone if I need to try for 5000 or 10 steps today, what I am supposed to eat today, if I need all my supplements or just the Iron and C, etc.. regardless.. an app like this could definitely help someone like me, if nothing else, just to remember what I am doing today
Hi Karin, if you are representative of a sub-population w/in the MS world, then yes, such a tech modality would be awesome. For myself, such an app would be awesome! And do you know OMS? That could be a great resource for you right now. Overcoming MS is a wonderful, UK-based non-profit promoting a healthy, multi-factorial lifestyle solution to managing MS. Founder Dr. George Jelinek himself had MS. Also check out Dr. Siray Stancic, another MD with MS. Lifestyle medicine similar to MS has been a great game changer for her.
Dr. Giovanni, what do you think of Dr. Jelinek and Dr. Stancic, given they are so similar to each other. Thank you!
I am very supportive of lifestyle medicine, but as complimentary not alternative. In addition, lifestyle medicine needs to be evidence-based and it is not always evidence-based. For example, a lot of dietary advice in MS needs more evidence to support claims.
I am in the US. But yeah, and app like this would be awesome! It's difficult to find much other than peer groups here to talk to about anything related to MS. sometimes that can be frustrating when you are looking for indepth answers because Dr. Google, of course, has so many different and often conflicting opinions about whether something can or cannot be related to MS.. Docs are not always reachable by phone or otherwise when you feel the need to urgently contact them and other than the regular follow ups there seem to be times when one feels very much alone with this disease
Hi Karin, sorry for the confusion. That must have been a typo. I am diagnosed with MS. Since diagnosis, my left hand is much less accurate on the keyboard! Have you checked out OMS? It's a great protocol, evidence based, put together by an MD with MS, Dr. George Jelinek. And it complements treatments as well. It's not an either / or type thing. And this blog by Dr. Giovanni is fantastic! I very much appreciate him and all his efforts!
Hi Prof G, I like the idea to have an application that could be installed on your phone/laptop & or ipad, that will help anyone who is searching for answers/support re their MS. The problem being is that there are already quite a few & you become a bit cynical that someone is making money out of your data! If you could wave a wand & join up all the dots with regards to care for MS - thus linking all the different HCPs needed to support a pwMS & this being linked to your own personal care through the hospital/clinic - I think you might be on to something :) My feeling is also - I don't mind anyone knowing what's wrong with me or sharing info about me, as it might help someone else (or me!) - & I have nothing to hide. But, if society accepted pwMS more in the working world (a lot of lip service out there) & having a chronic illness should not be hidden away - again, we could all engage & info, along with new research or new meds/DMDs - could be up to date & everyone would feel (hopefully) valued and cared for. My biggest problem with my own healthcare team is that no-one talks to each other, as they don't have the time & appmnts are sometimes too short & a patient is often left with not addressing all their MS problems - just the most serious/urgent. This should not be the case & the pressure of loading more & more work on GPs & Pharmacists is fine, as long as you don't live in a busy city or suburb. They are taking too long (pre-pandemic too) to process, what can be dealt with very quickly - if only we had direct contact with someone, preferable your Neuro or Nurse. The future is going along the lines of tech & less human contact - that's fine if you are able to use technology - but I fear for those that find it difficult to relate or are unable due to their MS or another conditions (eyesight/hand/finger use) which hinders will hinder them greatly. People need to see people - connect, engage & steer away from using tech for their appointments. What should be clear - is that more time is given to educate, help, motivate, support & allow pwMS access to good physio, psychological support, diet (nutrition), pain management, DMD information & knowing potential side effects & generally gaining access to Urology, Ophthalmology - and giving rise to the cannabis & or other more natural pathways. Also, what happens why they've given me 10 DMD infusions - do I keep getting them? Questions & Answers that come up and a good director, confirming the right social media or site to visit. It is very scary to be diagnosed with a life-long condition and we do need to be supported on I hope, our long journey to old age! :)
You touch on several very important points. The tech divide has the potential is widen health inequalities. A retried colleague of mine explained to me how he had spent the better part of a week getting an 80 year old neighbour sorted out with a smartphone and her NHS application. She needed her COVID-19 passport to travel to see her family over the Christmas period. There are many people who are not digital natives who will not wan to have their MS managed via a smartphone or web app. What about them?
I agree it would be great to have something like this so have added some ideas!
I don't know much about hospital data but I think this would need to start with a centralised MS system that was implemented across all the MS centres (allowing data sharing) where patient data could be pulled from the various EHR/hospital systems. I would see the patient App hang off the MS system so that data could be pushed out from the MS teams to the patients and relevant information pulled in from the App.
I think the biggest challenge is to implement an MS system that could communicate with the various NHS systems. I think if you could do that, then adding all sorts of useful functionality to the App and integrating it into 3rd party Apps would be the easier part.
The electronic prescription service is an example of where a successful communication system was set up between community pharmacies (running on a variety of systems), GP practices, and the patient App. I think the key to success here was the huge effort that went into support and sending trainers into community pharmacies and GP practices, the Apps were pretty intuitive so fell into place.
Maybe funding for a feasibility study would be a place to start and see what is realistically possible, looking at the NHS data that the App would ultimately need to communicate with.
This app sounds good, but this person must have been snoozing for ages. I knew all these things:- caffeine, Vit D and zoster virus and I'm not even on OCR. All this stuff and much more is out there already on the blogs, Barts and Prof G, MS charities, Aaron Boster Youtube channel. Has been for ages, even years in some cases. This person is media savvy so why hadn't they been accessing all this information, if only from Naomi? The important thing is they now have the information and they're rapidly catching up on useful knowledge. I never I/D medics whether I'm happy with them or not.
Feb 15, 2022·edited Feb 15, 2022Liked by Gavin Giovannoni
my vision would be that no-one gets to this stage.
Instead, early preclinical signals are picked up (e.g. fatigue, in combination with autoimmune presence in family) and those people are started on DMTs immediately - years and years before they would have met McDonald diagnostic criteria. (Those in this group who, later, can be sure not to have MS risk simply stop taking the DMTs.)
Yes, and I'll be honest, the app sounds fantastic - almost Utopian. It's the tech companies have destroyed trust in this space. I also don't trust the health service in my country (they have been caught sharing/selling data with a chinese genetics company without consent). So I think this space is dead and maybe your 'Dystopian?' question is closer to the truth than I first realized.
I’ve had a look at the app and it seems to have been developed in the Torbay and Devon area. I can’t see that it will extends to other areas at the moment. I may be wrong, in which case please let me known
Please be aware that the scenario is fiction. I wrote it three years ago when we were trying to get momentum behind developing a self-help application for pwMS. We hosted a meeting at Heathrow Airport in 2019 of all potential stakeholders, but support for the initiative was lukewarm. Since then we were awarded a grant to scope out what pwMS want and are in the process of finalising the scoping exercise. The survey at the end of the Newsletter is part of this scoping exercise.
As one “for instance” as to why such an app may not be wonderful, is how many people did not catch that your app story was not real. I am “old school”, so you would expect me to have this orientation, but I don’t think smart phones are the way to go. What problems would you be trying to solve? This is not an MS problem. You can tell who uses a full size keyboard and who uses a smart phone, because smart phones are not suitable for thinking more than two sentences or clicking yes or no. I see “smart” phones as more of an overall dumbing down, when that is all that is used. It’s primarily an economic device for making money.
I did want to give feedback on a related topic. I do wander about every now and then on MS social media sites and dive in where fact is needed to prevail over fiction regarding MS. Because there was no smart phone when I developed MS, and now they are more than popular, even necessary, I believe I have a good feel for what has been added to the landscape. I really shouldn’t say “added”, the word “amplified” is probably more accurate- People still do what they do and it is easier to see it happen in action, on social media (for example).
So the feedback is, that I wanted and want to, refer people to the MS Selfie as a reliable source of honest MS information. The complete story, the good and the bad. I can’t tell them to “Google” MS Selfie, as two independent sites come up in search results and neither mentions the other. Both are good, but the other (not this one), seemed to be near complete as a very good resource (that’s a whole other essay- what is a good resource). I wish there was an easy and reliable way to refer to the knowledge based site.
Finally, the biggest problem I see, overall (everything), is orienting the newly diagnosed to learn of their situation and empower them to take an equal lead or partnership in their journey, rather than leaving it up to specialists or others only, resulting then in the frequent coming back to blame them or something else later, when things don’t go well. Then they become even more susceptible to BS. (Maybe that'll be my new motto- "Don't forget the Bee Stings". )
Also, I believe you have a better chance at making a difference with testing & verifying MS knowledge than you do with an advanced App.
I don't mind being surveilled by my doctors (in the US this is like, Epic MyChart), or even biobanks (I work in research so I always sign up for biobanks cause it's HARD to get numbers!) but I really don't like the idea of these solutions being led by tech/"tech" companies, where nobody knows about biology or medicine or privacy and they're just here because they heard it's good money this week. I'm thinking about Theranos, and also this story https://spectrum.ieee.org/bionic-eye-obsolete and also Elon Musk's new brain implant thing. I think I can already do most/all of the things described in your hypothetical app, and I just don't mind using 5 apps instead of one. Although to be fair I'm not at a point where marginal boosters to cognitive/executive function (e.g. setting timers, etc) make a big difference, and a lot of people are.
Data privacy is a huge concern, regardless if this is a made up scenario or not… People should consider sharing this kind of data very, very carefully. Another comment I would make is that anything that goes through Google wouldn't get any data from me, because Google cares not about anyone's privacy, quite the opposite. As usual, it would entirely depend on who made the app and what the data privacy contract is like, (and whether or not it is a policy that people can actually understand without having a lawyer present).
The convenience and immediacy is nice, but having been a Technologist who has studied the social implications of technology in my masters (and considered a PhD in it with approved samplings before MS made that unfeasible], I can firmly say that'd all technology comes at a significant cost. People always look at the shininess of the convenience and benefits, and not at the losses, some of which only become profoundly apparent a decade or more later... as we can see unfolding with social media being used to interfere with elections in the west. It would be wise to deeply consider how such a platform could go wrong, could be co-opted, or could be problematic if the data were't perfectly secure, and what costs it could potentially have for its users, not at the outset but years down the line. The same applies to wearables that track sleep, exercise and other data that could be used against someone in ways not yet imagined, without deep thought. Insurance companies inThe US asking users for this data for "cheaper rates" for those who stay fitter, should be a gravely concerning example.
Oh gosh, no surprise so many of us thought it was about a real service, I'll speak for me alone,
Why the heck are we not building this service?
Why the heck are we stuck with a 1953 health care provider model in the UK?
We really believed this service existed and many of us are still coming to terms with the fact UK healthcare provision in the 21st century has somehow got stuck in 1953
The service or app seems to address the big stuff we need as well as the big stuff healthcare professionals might need..
We clearly lack professionally curated, targetted, accurate information about the disease and treatment , diet or lifestyle/activity options
- especially info targetted to our specific current individual experience of this multifaceted unpredicatable disease and potential future paths - this would solve much of that..
yeah it's all on the internet..
bit like that needle I'm looking for is in the haystack ! So how much of this internet searching returns accurate evidence based info?
How much could a patient be expected to research every paragraph on every site?
How much could we be objective.. or eliminate our bias, ignore our emotional drivers, set aside the pain or fear... to mindfully digest and act on the appropriate information in an appropriate manner?
And yah, MS trust is fab, OMS likewise, National MS society, but they're all largely aggregators that simplify and present information from others.. as well as that the patient needs to know their needs (pause and think how many of really do know.. we have little to no genuine evidence much of the time) and be able to navigate and understand and evaluate multiple sets of complex information at volume.. then reach a correct decison, even at the last it's all for nowt if we do not have the wil/means/capacity to act on it..
We clearly lack real time evidence based health measures
- devices to do this are now affordable and available through the 'internet of things' or in this case probably a smartwatch to monitor and record multiple systems while automatically sending to a database.. databases can be secure and accessible to those that need access
Healthcare professionals are human and work in a dysfunctional system
- every forum is a series of heartbreaking questions from people after diagnosis who have health care teams, asking things likewhen should I have an MRI, is there any medicine for spasms and so on, I've been offered aubagio as my only choice.. somewhere between what the guidance is what is delivered there are large, life changing gaps..
Health care professional are not (all) good coaches
- yes some coach, and even better a few are genuinely good at it..
there are already well used coaching systems through online services and if we dare admit, games. advertising and scial networks that create positive behavioural change
Social support, we used to call them 'friends', haha
- it's so much better when we're not on our own, again the systems already exist and are in mass use for so much else.. there are a few atempts in the MS world, but it's all so haphazard and takes a lot of savvy or prior experience from the patient to gain meaningful interaction or benefit
Performance measurement and patient awareness of that performance
- Yesssss, surely one of the sinking stomach realisations as a patient is when asking a question about your hospital or care team on a forum, multiple folks pop up and say, oh yes they're hopeless just keep on trying..
Not that anyones doiung a bad job or wakes up wanting to be an awkward unhelpful person, but at least where it is happening support could be given to improve and adopt best practice from other trusts or teams, it's about targetting support and help to get better outcomes.. not people ;)
MRI's - We clearly lack access and understanding of what they mean, besides blood tests and subjective experience they are literally the only evidence most of us have
- Why isn't there a central MRI repository that we can access?
Why isn't there analysis we could access, it's heartbreaking to realise no ones looking at an MRI and the anlysis can miss things
In comments there are lots who like me thought this was a real app and plenty of areas to explore and fear and reasons 'why not' to address - I think they're addressed above - but in short should it not be clear..
- Many people cannot use or have reliable access to a connected online device, yes there would need to be offline routes for those folks to access the service or supported use, this is normal for non commercial services and entirely achievable - letters are still sent, face to face appintments still happen - some of the things the NHS does overly well ;)
- Data privacy, there are already secure networks and systems that keep data securely and allow access only on aneed to know basis. Google is not involved. A problem is a lack of accurate data and a lack of formatting, access and analysis of data to generate useable insight that will imporve care practice and medicine..
- Most people will not have real time or any meaningful access to health tracking devices - The devices exist already that need close to, or zero patient input and can be distributed and maintained easily and cheaply
I'll stop, although there's much much more..
Lets support decent effort through initiatives like this from Dr G
It's about saying 'why not' because if we keep on questioning 'why', we'll just get more of the same and the outcomes that creates.. will continue to create.. for us, our families, friends , colleagues, and countless unknown others
On that note, how might I help beyond this effort beyond completing the survey?
I really like the idea of this app. But I believe it all starts with the patients "self-efficacy." Have they tapped into their Why and aligned those values with their lifestyle? I think a coaching app is the future. Like Kit said, all that info is already accessible on the Internet. A ton of info is already there. There is no longer any excuse to be uninformed. Same with research. It's all there, easily accessible. But with this info, the patient needs to act. And act sustainably, with joy and vision. Acting out of fear and deprivation / desperation is not sustainable.
MS has shown me how inadequate the US system is for chronic conditions. It truly is a "disease care" system looking for the silver bullet which will allow people to remain on SAD and SAL while taking one pill (note: SAD = standard american diet; SAL = standard american lifestyle). SAD and SAL don't work. The data bears that out. As a PWMS, I'm an increasingly convinced that effective management is leading an anti-oxidant, anti-inflammatory lifestyle. (ie mouth, feet, sleep, stress, social). That's it. I rarely think of MS, but I think of my lifestyle constantly, to make sure that it is intentional and as healing as possible. And all of this will lead to an incredible Placebo Effect too. With no negative side effects. And it's super economical and life affirming. Tech is not the answer. Lifestyle change is. How do we use tech to promote lifestyle change, c'est la question, non?
Why can tech NOT be used to reaffirm these lifestyle changes? Some people, with or without MS are so wrapped up in their tech, that an app to prompt them to make certain changes in diet and exercise as well as other things in their lifestyle that is wrong and help them track this daily, the way a smart watch or other device sorta does, could be very helpful for a lot of people. For me, I can't remember what day it is half the time, let alone if I need to try for 5000 or 10 steps today, what I am supposed to eat today, if I need all my supplements or just the Iron and C, etc.. regardless.. an app like this could definitely help someone like me, if nothing else, just to remember what I am doing today
Hi Karin, if you are representative of a sub-population w/in the MS world, then yes, such a tech modality would be awesome. For myself, such an app would be awesome! And do you know OMS? That could be a great resource for you right now. Overcoming MS is a wonderful, UK-based non-profit promoting a healthy, multi-factorial lifestyle solution to managing MS. Founder Dr. George Jelinek himself had MS. Also check out Dr. Siray Stancic, another MD with MS. Lifestyle medicine similar to MS has been a great game changer for her.
Dr. Giovanni, what do you think of Dr. Jelinek and Dr. Stancic, given they are so similar to each other. Thank you!
I am very supportive of lifestyle medicine, but as complimentary not alternative. In addition, lifestyle medicine needs to be evidence-based and it is not always evidence-based. For example, a lot of dietary advice in MS needs more evidence to support claims.
I am in the US. But yeah, and app like this would be awesome! It's difficult to find much other than peer groups here to talk to about anything related to MS. sometimes that can be frustrating when you are looking for indepth answers because Dr. Google, of course, has so many different and often conflicting opinions about whether something can or cannot be related to MS.. Docs are not always reachable by phone or otherwise when you feel the need to urgently contact them and other than the regular follow ups there seem to be times when one feels very much alone with this disease
Hi Pat, I just re=read your comment.. what do you mean HAD MS?
Hi Karin, sorry for the confusion. That must have been a typo. I am diagnosed with MS. Since diagnosis, my left hand is much less accurate on the keyboard! Have you checked out OMS? It's a great protocol, evidence based, put together by an MD with MS, Dr. George Jelinek. And it complements treatments as well. It's not an either / or type thing. And this blog by Dr. Giovanni is fantastic! I very much appreciate him and all his efforts!
Hi Prof G, I like the idea to have an application that could be installed on your phone/laptop & or ipad, that will help anyone who is searching for answers/support re their MS. The problem being is that there are already quite a few & you become a bit cynical that someone is making money out of your data! If you could wave a wand & join up all the dots with regards to care for MS - thus linking all the different HCPs needed to support a pwMS & this being linked to your own personal care through the hospital/clinic - I think you might be on to something :) My feeling is also - I don't mind anyone knowing what's wrong with me or sharing info about me, as it might help someone else (or me!) - & I have nothing to hide. But, if society accepted pwMS more in the working world (a lot of lip service out there) & having a chronic illness should not be hidden away - again, we could all engage & info, along with new research or new meds/DMDs - could be up to date & everyone would feel (hopefully) valued and cared for. My biggest problem with my own healthcare team is that no-one talks to each other, as they don't have the time & appmnts are sometimes too short & a patient is often left with not addressing all their MS problems - just the most serious/urgent. This should not be the case & the pressure of loading more & more work on GPs & Pharmacists is fine, as long as you don't live in a busy city or suburb. They are taking too long (pre-pandemic too) to process, what can be dealt with very quickly - if only we had direct contact with someone, preferable your Neuro or Nurse. The future is going along the lines of tech & less human contact - that's fine if you are able to use technology - but I fear for those that find it difficult to relate or are unable due to their MS or another conditions (eyesight/hand/finger use) which hinders will hinder them greatly. People need to see people - connect, engage & steer away from using tech for their appointments. What should be clear - is that more time is given to educate, help, motivate, support & allow pwMS access to good physio, psychological support, diet (nutrition), pain management, DMD information & knowing potential side effects & generally gaining access to Urology, Ophthalmology - and giving rise to the cannabis & or other more natural pathways. Also, what happens why they've given me 10 DMD infusions - do I keep getting them? Questions & Answers that come up and a good director, confirming the right social media or site to visit. It is very scary to be diagnosed with a life-long condition and we do need to be supported on I hope, our long journey to old age! :)
You touch on several very important points. The tech divide has the potential is widen health inequalities. A retried colleague of mine explained to me how he had spent the better part of a week getting an 80 year old neighbour sorted out with a smartphone and her NHS application. She needed her COVID-19 passport to travel to see her family over the Christmas period. There are many people who are not digital natives who will not wan to have their MS managed via a smartphone or web app. What about them?
I think you've covered it all well. Interpersonal contact, breaking fear barriers, supported by tech.
I agree it would be great to have something like this so have added some ideas!
I don't know much about hospital data but I think this would need to start with a centralised MS system that was implemented across all the MS centres (allowing data sharing) where patient data could be pulled from the various EHR/hospital systems. I would see the patient App hang off the MS system so that data could be pushed out from the MS teams to the patients and relevant information pulled in from the App.
I think the biggest challenge is to implement an MS system that could communicate with the various NHS systems. I think if you could do that, then adding all sorts of useful functionality to the App and integrating it into 3rd party Apps would be the easier part.
The electronic prescription service is an example of where a successful communication system was set up between community pharmacies (running on a variety of systems), GP practices, and the patient App. I think the key to success here was the huge effort that went into support and sending trainers into community pharmacies and GP practices, the Apps were pretty intuitive so fell into place.
Maybe funding for a feasibility study would be a place to start and see what is realistically possible, looking at the NHS data that the App would ultimately need to communicate with.
Actually there is a MS-connect app in Germany but doubt this app is meant. Floodlight is as far as I know from Roche. Where can I find Ms-connect
It is a hypothetical App to explain a potential future app.
Thank you sadly. It would be great
Oops
This app sounds good, but this person must have been snoozing for ages. I knew all these things:- caffeine, Vit D and zoster virus and I'm not even on OCR. All this stuff and much more is out there already on the blogs, Barts and Prof G, MS charities, Aaron Boster Youtube channel. Has been for ages, even years in some cases. This person is media savvy so why hadn't they been accessing all this information, if only from Naomi? The important thing is they now have the information and they're rapidly catching up on useful knowledge. I never I/D medics whether I'm happy with them or not.
It's fiction. I wrote the scenario 3 years ago ;-)
Took me a bit too, to realize it was fiction.
Please complete the survey. We need your input into deciding if the effort of making an app or something similar is worth it.
You know all these things but everyone does not. Many of us find it hard to keep up, even doctors don't always keep up
Hi what wonderful news I would like to use it. Where do I find it. Keen to use it.
my vision would be that no-one gets to this stage.
Instead, early preclinical signals are picked up (e.g. fatigue, in combination with autoimmune presence in family) and those people are started on DMTs immediately - years and years before they would have met McDonald diagnostic criteria. (Those in this group who, later, can be sure not to have MS risk simply stop taking the DMTs.)
Hi - I can’t find MS-Connect on the App Store, but have found MS Connections. Is this right? Thanks
MS-Connect is something that does not exist yet.
D’oh 😆
The whole thing sounds very much like an AI generated ad for an app.
Dystopian? I agree. It does not exist yet. Do you want it?
No, but I seem to be an outlier these days with my automatic revulsion to sharing personal information online. I imagine most people would like it.
I agree. I think there is a backlash building against online data mining,
Yes, and I'll be honest, the app sounds fantastic - almost Utopian. It's the tech companies have destroyed trust in this space. I also don't trust the health service in my country (they have been caught sharing/selling data with a chinese genetics company without consent). So I think this space is dead and maybe your 'Dystopian?' question is closer to the truth than I first realized.
Same thing for me. I would probably use an app designed by my hospital or by the healthcare system. I surely wouldn't use other apps
Online - not for me either.
I’ve had a look at the app and it seems to have been developed in the Torbay and Devon area. I can’t see that it will extends to other areas at the moment. I may be wrong, in which case please let me known
It is a hypothetical scenario and exists in part but not as oneApp.
Please be aware that the scenario is fiction. I wrote it three years ago when we were trying to get momentum behind developing a self-help application for pwMS. We hosted a meeting at Heathrow Airport in 2019 of all potential stakeholders, but support for the initiative was lukewarm. Since then we were awarded a grant to scope out what pwMS want and are in the process of finalising the scoping exercise. The survey at the end of the Newsletter is part of this scoping exercise.
As one “for instance” as to why such an app may not be wonderful, is how many people did not catch that your app story was not real. I am “old school”, so you would expect me to have this orientation, but I don’t think smart phones are the way to go. What problems would you be trying to solve? This is not an MS problem. You can tell who uses a full size keyboard and who uses a smart phone, because smart phones are not suitable for thinking more than two sentences or clicking yes or no. I see “smart” phones as more of an overall dumbing down, when that is all that is used. It’s primarily an economic device for making money.
I did want to give feedback on a related topic. I do wander about every now and then on MS social media sites and dive in where fact is needed to prevail over fiction regarding MS. Because there was no smart phone when I developed MS, and now they are more than popular, even necessary, I believe I have a good feel for what has been added to the landscape. I really shouldn’t say “added”, the word “amplified” is probably more accurate- People still do what they do and it is easier to see it happen in action, on social media (for example).
So the feedback is, that I wanted and want to, refer people to the MS Selfie as a reliable source of honest MS information. The complete story, the good and the bad. I can’t tell them to “Google” MS Selfie, as two independent sites come up in search results and neither mentions the other. Both are good, but the other (not this one), seemed to be near complete as a very good resource (that’s a whole other essay- what is a good resource). I wish there was an easy and reliable way to refer to the knowledge based site.
Finally, the biggest problem I see, overall (everything), is orienting the newly diagnosed to learn of their situation and empower them to take an equal lead or partnership in their journey, rather than leaving it up to specialists or others only, resulting then in the frequent coming back to blame them or something else later, when things don’t go well. Then they become even more susceptible to BS. (Maybe that'll be my new motto- "Don't forget the Bee Stings". )
Also, I believe you have a better chance at making a difference with testing & verifying MS knowledge than you do with an advanced App.
I’ll stop there; just thinking out loud! J
I don't mind being surveilled by my doctors (in the US this is like, Epic MyChart), or even biobanks (I work in research so I always sign up for biobanks cause it's HARD to get numbers!) but I really don't like the idea of these solutions being led by tech/"tech" companies, where nobody knows about biology or medicine or privacy and they're just here because they heard it's good money this week. I'm thinking about Theranos, and also this story https://spectrum.ieee.org/bionic-eye-obsolete and also Elon Musk's new brain implant thing. I think I can already do most/all of the things described in your hypothetical app, and I just don't mind using 5 apps instead of one. Although to be fair I'm not at a point where marginal boosters to cognitive/executive function (e.g. setting timers, etc) make a big difference, and a lot of people are.