What are your thoughts on using socially media for interacting with other MSers? #ClinicSpeak #MSBlog
“Do you use social networking sites to manage your MS? There is an interesting news piece in last week’s BMJ looking into some of the issues around social networking and the use of social media to self – manage medical conditions (please read the article). In era of when knowledge has been democratised this comes as no surprise to me. What is worrying is that some of these social media groups have a ‘them-and-us’ philosophy and have been deliberately set-up in competition to the medical profession. Some of these sites support ‘unproven therapies’ and ‘pseudoscience’ and tend to be unmoderated. Clearly a balance needs to be maintained between you the person with MS and the medical profession and the best patient-run social networking sites partner with the medical profession. At the end of the day the aims and ambitions of patient groups and the medical profession should be aligned. Surely we have the same objectives”
“Do you belong to a social networking sites dedicated to MS? What do you think of them? Would you recommend them to other people with MS? Do you think healthcare professionals should join? Do you think they should be open or closed networks? What about advertising on these sites; is it overt or covert? Are there ways to vet members to make sure they are real people rather than some avatar to push an agenda? How do you deal with bullying? What happens if someone, or a small group, dominate the site and take it over to push one issue?”
“You could argue that our Blog is a social networking site, but we took the decision to remove the membership app and simply leave it as open resource. May be we need to change that policy?”
Stephen Armstrong. Social networking for patients. BMJ 2016;354:i4201
Excerpts:
….. Is social media saving lives? Or is it spreading poor information and damaging private confidentiality?….
….. Patient groups began as small gatherings for people with the same condition in the same area to meet each other. They then evolved into highly professional operations, with often national or international organisations doing everything from connecting patients to raising public awareness of conditions and lobbying governments on behalf of their members…..
…… Today social media have become invaluable for many patients, especially those with unusual or rare conditions…..
…… Facebook, the world’s leading social media network, with some 1.09 billion daily active users radically changed the structure and content of online support groups by enabling anyone to set up a group, usually without expert moderators……
….. The BMJ contacted Facebook to ask how many patient groups the company hosted, what sort of oversight there was for patient groups, and whether Facebook worked with drug companies on advertising or data gathering. A company spokesperson refused to comment, offering only a link to the general Facebook groups information page, which contains no data…..
…… When setting up a Facebook group, founders have three privacy options—public, closed, and secret. Anyone can see or join a public group, whereas they have to ask to join or be invited to join a closed group. People can only join a secret group if they are invited by an existing member…..
….. As a result of information exchanges between members of the group and physicians at the Jefferson Headache Center in Philadelphia, the centre has begun trials of ketamine infusion therapy for cluster headaches with members of the support group……
….. he set out a series of rules for participation in the private group, “including a ban on pseudoscience, reliance on trustworthy advice backed by medical science, and intolerance for bullying.” …..
….. Some US patients disagree with a ban on treatment suggestions that aren’t recommended by healthcare professionals. “If you are seriously ill, you cannot assume that your doctor is an expert who keeps up with current research,” argues Liz Logan, from New York, whose husband was diagnosed with Parkinson’s disease two years ago. “You have to do your own research. You probably will have to change doctors more than once, and social media is where you get information from people most invested in getting better: other patients. I know far more about Parkinson’s at this point than the first idiot neurologist who dismissed the possibility of my husband having Parkinson’s, resulting in two miserable years before diagnosis by a movement disorders specialist, which I wouldn’t have known was the right kind of neurologist without social media.”……
…… The risk of social media being used for promotion of dangerous or unsuitable remedies is a big concern for healthcare professionals…..
….. “Peer support between patients can be hugely beneficial for their wellbeing during an illness, or when in recovery, and social media can provide a convenient, accessible platform for this,” explains Maureen Baker, chair of the Royal College of GPs. “However, while we encourage patients to take an active interest in their health, using online support groups, and other tools to share medical ‘tips’ could result in them receiving misleading, superfluous, or incorrect information, so these forums should not be seen as a replacement for proper medical care.”……
…… “there is no guarantee that a closed Facebook group is actually 100% private…..
…… This lack of control coupled with Europe-wide regulations codified in the United Kingdom under the Association of the British Pharmaceutical Industry’s code of practice mean that drug companies outside the US and New Zealand are steering clear of all Facebook support groups…..
……. Few physicians are currently using social media to talk to patients—a practice that the General Medical Council suggests be treated cautiously……
…… For some patients, the idea of any healthcare professionals taking part in patient groups is an anathema; many see them as private patient spaces where people can vent frustrations about treatment…..
All FB groups I belong to have one or more 'admins', who do all the vetting and disciplining. There are 'codes of conduct' for each group, which outline rules and expectations as well as whether advertising is allowed (almost always not). The support groups seem to share experiences and seek validation and support. HSCT related groups frequently exhibit the 'them & us' attitude. But given that this is the key area where patients and neurologists thoughts differ, can you blame them? Most patients who want HSCT travel overseas as they are not prepared to wait (with time they don't have) for trials to be started and finished in their own country. Patients need to be given more of a say as to the treatment they want, since no one can tell them their prognosis or even what will and will not work. Provide the honest and accurate information and let the patient decide what risks they are willing to take, as long as they are making a considered decision (as opposed to an emotional one).
I experienced the us and them attitude too. At first, I thought some of the forums were nuts. Then I got the neuros' side of the story and I could see how those people went from a to xyz: they are so disgruntled with what they have gone through that they have no trust left in neuros and call them liars. As always, the truth lies somewhere in the middle but I do have to say that I am disappointed in the neurology profession. My partner has had a long and tortured medical history and this was the first time I experienced doctors calling their patients and each other irrational. That doesn't change the 'nutiness' of the various forums out there, but I do feel neuros by and large as a generalisation with many many exceptions, believe they are gods. If the MS landscape wasn't so messy in the first place and they knew more to agree more with each other even about simpler issues the complex would be easier to work with: but it isn't and they don't.
Forums I see as social networking sites. Unfortunately there has been bullying and there have been some that dominate the sites, offering sometimes unsound advice. It's my way or its the byway type of attitude which is a shame. One particular site became quite nasty around the time of the referendum and after, how it would impact on pwMS. How do you deal with bullying? I report it and then take time out from the forum.
Indeed yes. Some simply look at head counts. Like its a race. "I have the biggest!". Biggest what?We have been approached by MANY entities over the past year and well… When in the top 5 of "What can we do togethers" are "We can get donations" we close the conversation. The LAST thing we want do is ask people with MS for unpurposed donations when they are trying to live. That $25 might be for better food .vs. whatall, an entity producing videos on MS then not wanting other web entities to utilize them, "No those are ours!"The MS universe is shattered, thats the truth.Those that choose have it remain shattered in self-interest and not that of people who live with MS should simply not be supported at all. That might consolidate things to a point where that universe might coalesce towards the better for all. It came apart long before any of the new DMTs even existed.Much of pharma and clinical entities put blame on the "NOW" of that landscape. "Its costing me time in my practice", "People are getting hurt by advice."They do not however take responsibility for the state of that landscape created which they do have a role in past tense.Of course, who knew?Foresight can be as blind as well… being blind.The landscape is what it is. The question is how to mend it.Blaming the patients for it is ridiculous at best. Whether dialog is right, wrong, misinformed, informed, up, down, anecdotal, factual, depressed or happy as a dove the patients are victims of a disease. They seek help where help can be found.Again, I dont know the solution. If one made a fully moderated venue, "We dont allow for peer to peer advice" people wont be showing up as thats what they are seeking.They dont come unto a forum, facebook or twitter saying, "Oh Hi! I have MS! I am looking to make friends with MS!" Those friendships occur but they are catalyzed by needs be they symptomatic advice, medical advice, emotional support etc.At the sametime as I said, its a small segment of the MS community. < 200,000 globally to be sure and less than 1% of it really active.Some consider themselves leaders in the global MS community. I dont want to be a leader in the MS community, I am not qualified. I want see the destroyed MS community get on the same page, beat the disease and do that by providing a tool by which those are qualified can make it happen.
We don't often agree, so I thought it was worthy of a smile when we do 🙂
LOL Bozo 🙂 <— Back at ya!I try and understand all perspectives on issues and I try take measure of what I see and/or hear. It may not be pleasant or even correct at times.Patient voice is a big issue. We attend a variety of functions for example. The landscape of MS is quite complex. Lets set aside a moment clinical/pharma/research/patient associations and just look at patients.We have male/female. We have type of MS, RRMS,SPMS,PPMS,Benign MS,Fulminant MS,Pediatric MS. We have levels of disability re:EDSS which we can essentially hack into minimal,moderate,major disability. We have age, young,young adult,adult,middle age,seniors.Only in the last 9 years do we have anything other than Interferon's or glatiramer acetate.Only recently does there appear to be a new gold standard in DMT (perhaps) Alemtuzumab .vs. Natalizumab. Natalizumab was generally only allowed for 2 years of dosing and now Ocrelizumab on the horizon.If all these DMT's in the past 9 years long term real-world claims match clinical trial then as neuro's say, "MS is not the same disease it was 20 years ago." And, its not.What is NOT discussed is HOW that ends up applied in that patient population. So pwMS who have engaged the new therapies may not and statistically probably will not incur the disability that those prior to said newer DMT's.Representation wise online who are the patient entities who lead? Tend to be those who endure significant levels of disability. Those not, perhaps due to the new DMTs may not be incurring disability like this other cohort or perhaps slower. Point being, they dont tend to be represented.If 10,000 newly DX'd .vs. 10,000 who endured RRMS 15 years these are likely to be VERY different pathologies based on DMTs and perhaps even whats been learned, VitD,diet,exercise. Most not enduring significant disability are unlikely to go online seeking support, BUT they do have MS are in many ways being represented… Continued
A prior post which you were *shocked* at strikes to this.MS Global Awareness. Patients want global MS awareness. They may not be sure of benefits/foibles thereof. In fact, many in the new DMT cohort might care less as they may not be incurring as much disability or perhaps they are NEDA.Clearly many more peeps with MS are not active in forums of FB groups than are. The largest FB group is about 20,000. Lets go wild and say 50% of those people are highly active in interactive venues. So, 10,000. 2.5 (+/- .2M) vs 10,000. 10% would be 250K, 1% would be 25K.So the real "active" cohort online is more like .5% or less. Yet, the Internet is VERY powerful. Less than 1,000 pwMS can cause a significant sustained scream.Biogen due to PML related to Natalizumab was tagged in the MS community as "the dangerous one!" vs Interferon/Glatiramer. Orals come along and Tecfidera has a handful of PML. Media reports it, that online small cohort goes wild. Biogens market value gets hammered. Fingolimod has had PML as well, less usage than Dimethyl Fumarate, they did not get hammered.Biogen fields a commercial. Viola! MS on the Tele! People may get to know the term. Heck, if the TV ad's work other BioPharma might jump in! Genzyme or perhaps see Ocrelizumab ad's. Instead, the even SMALLER leadership cohort of that small online active cohort rallied the troops. "How dare they represent MS like that!"Mucinex does happy flem. Myrbetriq everyones favorite animated bladder. Cancer drugs showing a happy golfer. Biogen's ad to me showed those newly diagnosed a different disease, hopeful .vs. lets take a subset of people ravaged by MS and put that on TV. Lets scare the crap out of people!Biogen removes the ad, pretty unlikely another biopharma is going to rush to the TV screens anytime soon. They saw the results. "Yea! Thats just what we want to do! Not!" So, a good chance at traction towards global awareness exits stage left.Atop that, now, "See… we have power!"Patient power is wonderful but not when its like a missile controlled by a few, towards the many with inconsequential foresight as to the responsibility thereof more or less how or where to aim it.If someone is going to take a leader role for 2.5 million people w/ chronic disease thats a big responsibility but its not treated that way. Instead its, "All those people empower me" where-as it should be visa/versa. Not every leader mind you, but more than enough to set MS back not move it forward.Thats what bothers me in this regard. If I am gonna represent pwMS as a patient I best have my crap together at a level that at the VERY least has the knowhow of the average neurologist more or less, PT, Psychologist, Psychiatrist when considering rallying or directing pwMS.Leaders have followers. The troops.There are pwMS who have been in/out of FB groups active like. If they come in all angry, on the attack lets say. They may get booted out.Does anyone SEE what has happened? Perhaps they had a relapse and the anger is the result. Maybe getting booted has them go really off… Even more! Continued!
….. Is social media saving lives? Or is it spreading poor information and damaging private confidentiality?….Both and in fact some worse, dead due to advice……. The risk of social media being used for promotion of dangerous or unsuitable remedies is a big concern for healthcare professionals…..Happens every single day……. Today social media have become invaluable for many patients, especially those with unusual or rare conditions…..True, but the segment of the global MS patient community is small…… The BMJ contacted Facebook to ask how many patient groups the company hosted, what sort of oversight there was for patient groups, and whether Facebook worked with drug companies on advertising or data gathering. A company spokesperson refused to comment, offering only a link to the general Facebook groups information page, which contains no data…..Pharma (Novartis) has already admitted it uses the FB groups for data extractions, others do too….. “Peer support between patients can be hugely beneficial for their wellbeing during an illness, or when in recovery, and social media can provide a convenient, accessible platform for this,” explains Maureen Baker, chair of the Royal College of GPs. “However, while we encourage patients to take an active interest in their health, using online support groups, and other tools to share medical ‘tips’ could result in them receiving misleading, superfluous, or incorrect information, so these forums should not be seen as a replacement for proper medical care.”……Yet the care systems do not provide for adequate solutions to the why's and wherefore's of the problems. They are very disliking of the expense it costs them but since provisioning such services freely would cost them no engagement…….. Few physicians are currently using social media to talk to patients—a practice that the General Medical Council suggests be treated cautiously……Some look up to them, some distrust them, some plain out dislike them.In reality much (much) of this falls within the realm of patients associations but near impossible for them to engage.
Prof G,Can I be so bold to make an observation / suggestion? The nice stuff first – this blog is excellent, your brain health initiative is impressive, your tube map thought-provoking. I notice that in recent times many of your posts are about teaching, social media, awareness raising. I think we now have high quality information for MSers and carers etc. I think we are well served by the internet, websites, blogs etc. These things don't keep me awake at night. What keeps me awake is the fear of my disease moving to SP, the fear that I may loose functions I will never regain. To ease these fears, I'd like Prof G to be in the lab and pushing out papers with findings which pharma can turn into drugs. Team G appears to have a wealth of talent, but the trials e.g. charcot project seem to fall by the wayside. Is Team G working on anything which might lead to neuro-protective agents or neuro-restorative agents? Think Hand is welcome, but there must be tens of thousands lie me in the RRMS stage who have opted for a highly effective treatment but still worry abut the future. Time to dust off the lab put down the graphic designer beret?
Neuroprotective yes neurorestorative no.. you can't do everything and each idea takes a decade to a decade and a half to come to fruition.
I was born in the former Yugoslavia. We moved to Australia before the war when I was 12.My childhood of day to day life in the socialist country was that there was always the 'official' line and the 'known' line in every facet of public and private life. Social medium has made the meeting place and dissemination easier, it has not changed gossip. So perhaps now it's time for the medical profession to respond by critically examining their role in communication and information dissemination. Can the medical profession, marred by frequent reports of internal bullying top down, really manage this? Or will the us v. them attitude continue while each side blames the other (man is history full of examples of such conflicts lol).
When medics are self serving, social media can be invaluable. It is very helpful to be able to converse and compare notes with fellow patients free from COI. I read new ideas/discoveries/results with interest (and often a pinch of salt) but it's not enough, an opportunity to talk about the day to day reality of what we are living with right now, with people that KNOW what this feels like, is helpful and we have to take it where we can find it. For all the hard work and studying a neuro endures, having symptoms decribed to you at uni is no substitute for FEELING it, especially when there aren't sufficient words.For me, it's not about self-medicating, it's having an honest and open conversation and exploring other ideas – even the ones that aren't going to make someone a name and a pot of money. As a patient, ms dissolved my career and life is on a downward spiral. As a neuro specialising, it is the opposite, ms IS the career, and comes with enormous potential. But that's just the way things are and it's no one's fault, but I think it's why there is this them and us.The way I see it, we need each other, but it's the neuros that have the upper hand, the patient is the little person allocated a couple of minutes of their precious time here and there and often treated like mushrooms (as in kept in the dark and fed…) and sometimes not really treated at all. I don't think most neuros have a God complex, it's just that their journey with this disease is on their way up the ladder and we as patients are sliding down it – with grease on our hands – and sometimes our heads are stepped on to help those on their way up. I like this blog because though I detect an amount of bs to placate the patients, it is informative and interesting – but to be honest I wouldn't want Prof G butting in elsewhere telling me that meditation isn't going to help me (it does) (actually don't know what his stance is on that just guessing) or that Copaxone didn't disrupt my regular mentrual cycle (it did, and now I am off it, it's back – age 51!) because as clever as he is, he doesn't know everything and I want to listen to other people's ideas too and not have mine – or theirs – rubbished because they don't suit or fit in with conventional medicine. I don't want narrow minded medical professionals interfering with other social media platforms, and I don't mean that in the unkind manner in which it seems, it is just that there are more ways of looking at things than are taught at neuro school and I would like to explore those too. So in short, no, I don't think medical professionals should get more involved in patient led social media.But by the same token, maybe I shouldn't read this blog. It is likely there are times I think I have understood what I have read but probably haven't, and a little bit of knowledge is dangerous right? 😉