Can we manage MS using social media? #ClinicSpeak #MSBlog #MSResearch #ECTRIMS2015
“Self-management of MS is the latest buzz word. Is it feasible?”
“I gave a lecture at our teaching course on Wednesday at ECTRIMS on the use of social media. I prefer to use the term patient-activation; by empowering MSers with knowledge you activate them to demand the services they need.”
“In my ECTRIMS talk on unmet needs I deliberately put services, symptomatic treatments and the adoption of innovations at the top of my list. Why? In my opinion if we get these right all other things will fall into place. Do you agree or disagree with me? Let’s start a debate on what is needed to create a better future for MSers and their families.”
“Self-management of MS is the latest buzz word. Is it feasible?”
“I gave a lecture at our teaching course on Wednesday at ECTRIMS on the use of social media. I prefer to use the term patient-activation; by empowering MSers with knowledge you activate them to demand the services they need.”
“In my ECTRIMS talk on unmet needs I deliberately put services, symptomatic treatments and the adoption of innovations at the top of my list. Why? In my opinion if we get these right all other things will fall into place. Do you agree or disagree with me? Let’s start a debate on what is needed to create a better future for MSers and their families.”
The short answer: No.The long answer is more than will fit into a post.The real answer is its moot as the technology quite purposefully is moving in a VERY defined direction set forth globally and entrusted pretty much to Microsoft.Continued movement towards globalization and in many nations (like the US) towards equalization will also bring forth regulation and only VERY recently has that ability actually become actionable in the technology itself. Windows "online" will seal that fate and the consumer will love it upside and down. After the sweeping changes are in place which may take another 15-20 years perhaps a bit longer as well as the global economic BANG resulting in a global equalization, subsequent recovery however long that takes… Then we might see evolution of many things including a globalized system by which social aspects become broadband in medicine and other areas. It will revolutionize IMHO but at the same time devolve populations which is one goal.Just as to many a "provider" a informed patient they do not consider to be a "good patient". Instead they consider an informed patient who is doing what they can (eat healthy, exercise etc. but follow what we tell you follow) is the best patient as then they can display best outcomes.My lady has a hand assembled care team. A highly credentialed neurologist who's PA actually has MS and even an infusion clinic in his office. She has a mental health care professional, a nutritionist that is MS aware (because? She has MS), a PT person (and again, the neuro's PA is a great help as he doesnt want become a MesS) and her general practitioner is a doctor of internal medicine, not simply a "here is your antibiotic for your sniffle") deal. He was a surgeon in the Ukraine, came here and of course, schooling for many more years would be needed. On his office wall, a photo of every great mind in medicine going back through history, globally.Some places in the USA there are universities than can supply an entire team. Bang. Done. With the facilities for everything, exercise etc etc. on site.Social media is neat but also rather a pox at times. For example, we have one fella who is CONSTANTLY yeppin' that neurologists have no place in MS. Over and over and over. Like I have some authority over it or we are supposed to be bashing systems. Bashing results in more bashing. Thats the slow road to change. The fast road to change is mutually beneficial relationships. If research continually beat up on research what happens? Complex systems need complex algorithms. In order to make those happen all sides need be debugged for patterns and common denominators. Then and only then can new algorithms slide into place that solve complex inputs and outputs.
Incidentally the "Over and Over and Over… fella" did forward us this which is certainly some interesting stuff: https://gladstone.org/about-us/press-releases/blood-clotting-protein-triggers-immune-attack-brainAlong with a link that Paul Allen aka: Microsoft bazillionaire wants spend $500 million to build a computer edition of the human brain. Maybe he's worried that his is failing and such an idea may well be proof. Computers need be tools not devices that think for us, that is devolving.Imagine what 500 million dollars could do to get in the case of MS drugs be they off label into the hands of real people. Bill Gates wants to rid the world of Malaria. For years the world wanted to rid itself of Bill Gates.In the USA for years everyone yowled for standardized health care so consistency might occur and mistakes not happen. Those moves have been happening for years now. Now the public wants personalized care which is exactly where we came from. And guess what? Consistency results in inconsistent outcomes. Imagine that. All illness is not the same from person to person given their disorders and mistakes still happen. In fact, they might happen more because standardization leaves holes. Have gas? Take this pill. Have diarrhea because of that pill? Take this pill 30 minutes after the first pill. That pill causes constipation? Before you go to bed then take this pill. Instead of someone saying, "Know what, your 54 years old, perhaps the Hot Wings, Pizza, Beer and Tequila shots twice a week during football games ought be a Salad with some Gatorade and then some good tasting grapes and cherries.
(1.) *Guided* self-management is the key – I think for intake and follow-up MS specialists should develop more thorough questionnaires about activities of daily living and other issues so that patients are prepared for office visits. Use a social history to gather information about the education/general intelligence of the patient. (2.) Learn more about the most popular social media sites transmitting information to MS patients – I read a lot of MS-related social media sites and blogs. This is by far the most helpful one. There is an extraordinarily large range in the ability of MS patients to comprehend this disease. Some patients believe DMT drugs will relieve symptoms. They are confused about the most basic aspects of treatment. Others are far more sophisticated. I'm sure this is true with other diseases. Neuros or MS specialist social workers might spend time reading some of the more online message boards to learn more about the kinds of information that is discussed on them. Perhaps this is already done, and I just don't know about it.
(3.) Organize online webinars and phone sessions for patients – I would prefer information-dissemination to be structured *more* through the MS specialists' office — through questionnaires and patient education — to help dispel some of the misinformation or questions that come from reading online message boards and the like. One neuro I have does evening seminars that are in-person only. If you're an MS specialist, you need to move to webinars and online programming. There is a huge potential for delivery of services that way. The NY MS Society has a lot of support groups that meet by phone. These kinds of approaches aren't expensive and they will help the service providers and doctors meet the patients who have difficulty traveling for meetings due to fatigue and/or mobility. There are some studies (I probably learned about them on this blog) showing that physical therapy follow-up done through phone calls and web sessions can be helpful. I think all of those things are good and should be more prevalent. MS World and MS News Today do a nice job covering the big meetings with patient education programming/ interviews, etc. All of these things are great. But, again, it's not just self-management, it's *guided* self-management. (4.) Innovations – I'm not sure what the answer is regarding the funding approach we have now that disincentivizes research that won't produce a monetizable drug product. As a PPMS patient entering my second 5 years with this disease, I am extremely frustrated. I am worried I am going to miss an important window of opportunity soon. I have another neuro who tries off-label approaches (like rituximab), so I do feel I have options. I follow all the reports from AAN, ECTRIMS, etc. I am extremely impressed by the size and commitment of the research community. I am less impressed by the way funding priorities are set up to favor drug companies' interests. I am angry about press releases hyping results before meetings. I also truly detest that these companies communicate more with investors than directly to patients. Biogen has issued a few statements regarding PML cases – we hear about those from news reports covering their calls **to investors** and not from any direct statements to patients. Ridiculous. At this point, I know enough to realize how little we know about MS, despite all of the research that has been done. I have to say, as a lay person with no medical training, I was not expecting that. I'd also like to see a group of informed and capable patients who can organize to advocate aggressively — very aggressively — for PPMS research and support. That might mean organizing patients to find those willing to participate in CSF based studies. Whatever it takes. It could involve a lot of things. Maybe Barts MS could write a blog post explaining what you think is possible for a group of organized patients to do to advocate for the community. Look at what ACT UP (especially TAG) was able to do in the US. Why not think big?
Social media might work, if all people with MS like using computers, smartphones etc. But I know of at least one person with MS who finds using such devices very uncomfortable due to eyesight issues. I personally dislike too much time spent on a computer, as I find it drains my creativity after some time. But I do appreciate the access to up to date research, as provided by this blog for example.
We attend many local MS functions. In the past month six of them in our community including one by the MSAA. The mix of people is broadband many of which could care less about technology. Some quite aged and some not so much. I've said it before. Change only happens bottom-up and top-down. Fighting systems in place can take years and I mean years. It's taken America over 200 years and 8 significant wars to get disabled people some form of reasoned legislation and its still far from perfect. It took the civil rights movement decades and its still imperfect. Want take things globally? People suffer with MS which is one disease amongst many and are denied medication access to affordable treatment even if they choose take their own risks with it.No sir.Change takes a long long long time if its gonna be a fight. Fights need be measured first off. Much of the "fighting" are faceless entities to begin with. "The care system" is a faceless entity. The Pharma corps. have patients see corporate names. The .org's represent groups of people that attempt paint a face on patients. All this has its place but fighting as history has shown results in more fighting. Sure, it can result in change given enough decades and events. But its not the right way.These "Systems" are BORN through and in RESPONSE to prioritized structures and staving off assaults (staying safe). Who suffers?Patients will raise their arms and say "Its Us!" They'd be right.But its not just them, the ENTIRE circle suffers. Thats the truth. Patients, Research, Care professionals, insurance, governments and pharma. Everyone needs be concerned about defense because someone is always on the offense and the offense is often pretty misinformed as these are ALL complex entities.Health Care professionals need earn a living, they are in business. Pharma is business. Research is often business and academic with results that are towards business. The fact they are in the business of health care means to a individual its a whole lot more interpersonal than the car tire dealer who is also in business. If my brand new tire had a bad lip and looses air I go back and they replace the tire. If I go to the doctor and now am urinating blood but before this pill was not I am off on the ballistic trail of blame.My $220 car tire has a mean cost of $24 before expenses, I know someone in the business. Within 72 hours of its release Grand Theft Auto 5 generated over 800 million in sales at $60+ a pop.Point being, people have their priorities and we tier and organize them usually incorrectly based on preference .vs. right decision.When it comes to lifestyles we achieve the absolute PINNACLE of this often moment to moment.