The future of MS care
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?
Have you ever wondered what the future of MS care looks like?
Back to the future
I am fuming; I found out that Naomi, my younger sister who also has MS, is regularly communicating with her MS team via a new web and smartphone application called MS-Connect. She has been using the app to manage her MS for several months. My neurologist and MS nurse have never heard of MS-Connect.
Why don’t people and HCPs specialising in MS share best practices?
MS-Connect is a beautifully designed and easy to use smartphone application that also can be accessed via a web browser. To my horror, none of the HCPs from my MS Centre are registered on the App. Like other Apps MS-Connect allowed me to register with my Google profile and asked me permission to use data from my diary, activity app, sleep and diet Apps. It only took me 15 minutes to complete my MS profile, which included the usual questions of when I first developed symptoms, about my diagnosis and MS treatments. It asked me if I wanted to complete my relapse history, but I simply flagged the app to remind me later.
I quickly completed a shortlist of questions about the remainder of my medical history and listed all my current medications. The App then asked me if I minded completing a baseline assessment to stage my MS. I had to complete a short online EDSS questionnaire, quality of life questionnaire and then had the option of activating a suite of Apps from the Floodlight portfolio of neurological applications. These Apps are great fun and assess multiple aspects of my nervous system including my hand function, my balance, walking speed, bladder, bowel & sexual function and my cognition. I found the Floodlight cognition App very hard to complete, but at least it will allow me to monitor the impact of MS on my memory over the next few years.
After completing these outcome measures MS-Connect then presented me with a list of problems and asked me if these problems were correct and if I wanted to add any others to the list. My current list includes fatigue, urinary problems, constipation, anxiety and potential problems relating to ocrelizumab my current DMT.
MS-Connect is amazing; the list was spot on and it asked me if it was okay to receive notifications about these problems in the future. After saying yes, MS-Connect asked me if there were other topics I would be interested in hearing about. I ticked the box in relation to lifestyle and wellness, comorbidities and new research findings.
Astoninglishly over the next week, I received several notifications to complete my Floodlight tasks and a few self-management notifications about fatigue and bladder management. I really had no idea that coffee, or caffeine, consumption can exacerbate bladder problems. Since cutting out caffeine my urgency has definitely improved. Thank you MS-Connect.
I real surprise was when MS-Connect asked me if I had had my rebaseline MRI scan after starting ocrelizumab. I had no idea about rebaselining, but at least I now understand the logic behind why it is needed. When I asked my MS nurse about the MRI she fobbed me off stating that as ocrelizumab is a high-efficacy DMT, and that Dr Wells, my neurologist, doesn’t monitor MS with MRI, I don’t need one. Apparently, Dr Wells believes clinical monitoring is sufficient to manage MS. Dr Wells and I are going to have a very interesting conversation when we next have a face-2-face meeting.
MS-Connect also asked me what my latest MRI results were. Embarrassingly I have no idea. A wonderful feature is a link to this site called IYB, short for Interrogate Your Brain, run by a company called BrainDynamics, which allows you to upload your own MRI and get a standardised MRI analysis back. I have already contacted the radiology department at my hospital to get all MRI scans on a disk so that I can upload them to the IYB’s analysis portal. I want to know how much brain volume I have lost compared to normal people of my age.
I received a notification today about herpes zoster or shingles. I had no idea it is a potential side effect of ocrelizumab. MS-Connect has given me advice on what to look for in terms of the early symptoms of shingles and that I would need to see my doctor as soon as possible if I thought I had shingles so as to get a course of an antivirals therapy prescribed. Again thank you MS-Connect.
The amount of information buried in MS-Connect is quite amazing. For example, I was browsing a section on MS education and read the section on vitamin D. I had no idea that the dose I have been taking is probably too low and needs to be increased.
The one feature that was disappointing was the one linking me to my MS team. When I searched for them in the HCP directory they were not there. This means that they won’t be able to monitor me via MS-Connect, nor will they be able to send me notifications about my upcoming appointments and results. This is very disappointing. Naomi, my sister, gets a reminder the day before her infusion and often gets a notification on the day of her infusion, for example, to come 20 minutes later as her infusion bay is running late. For an NHS service, MS-Connect is simply brilliant.
A feature of MS-Connect that was very illuminating was the section on quality standards and had an international league table of how MS Centres are performing relative to each other. I had no idea that MS should ideally be diagnosed within 4 weeks of being referred to a neurologist. It took my neurologist over 7 months to give me a diagnosis. I am particularly impressed with some of the large US clinics that seem to be able to make a diagnosis of MS within days; c’est la vie!
What I like most about MS-connect has been the social aspects. I have been able to link up with my sister, and three of her friends with MS, in a chat room. All she did was send me an email from the App which allowed us to connect as a group in the App. She met all her new friends with MS when coming up for her monthly natalizumab infusions. The five of us chat regularly and share ‘MS experiences’ in private. The social feature has also allowed me to share my Floodlight data and activity monitoring with my sister. We are now competing with each other to see who can do the most steps in a month and to see who can squash the most tomatoes in a minute in the Floodlight hand function App. There is nothing like a bit of competition to motivate you to do something.
It is clear whoever designed and made the MS-Connect application does not want to reinvent the wheel. In the ‘Other Resources’ section there are links to other online resources and MS-Connect also allows you to hoover in your data from several other very useful MS applications. I was able to directly import my data from SymTrac and Cleo.
I have only been using MS-Connect for 6 weeks and in that time I have learnt so much about MS and how to self-manage my condition. I feel empowered to ask the right questions and get the most out of the time I have with my MS nurse and neurologist. My big task is to now get them to sign-up to MS-Connect and to use it to help me and other people with MS.
Back to the past
My vision of MS management in the future is how do we truly democratise knowledge, breakdown barriers between HCPs and pwMS, empower pwMS to ask the right questions and focus on what really matters in the management of MS, i.e. (1) improved outcomes, (2) better quality of life, (3) reduced healthcare costs, (4) greater efficiency and (5) equality of access.
At the moment there is a massive investment into healthcare from the technology companies, both from the tech giants and new start-ups. They are all betting on a future where technology disrupts the current Victorian model of medicine and healthcare, which is configured around HCPs based in large difficult to get to institutions. 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. Applications such as the hypothetical MS-Connect above is just one potential solution to this problem.
As part of our ‘Brain Health: Time Matters’ initiative we are trying to scope out what pwMS and other MS stakeholders need. So if you have time we would appreciate it if you could complete a relatively short questionnaire on what you would want from a future application.
Click here ➡ The Brain Health: Time Matter’s survey
If you have any ideas in relation to this topic please feel free to share them with us. The more pwMS and other MS stakeholders engage the more likely we are to transform MS care.
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Medium (the above newsletter is based on a Medium post from 7-April-2019)
General Disclaimer: Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Barts and The London School of Medicine and Dentistry nor Barts Health NHS Trust. The advice is intended as general advice and should not be interpreted as being personal clinical advice. If you have problems please tell your own healthcare professional who will be able to help you.
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?