Are you prepared to pay for quality online MS-related content? #PoliticalSpeak
Do you think quality web content including medical education should be free? I note that the European Charcot Foundation is moving towards a subscription model.
Is providing free content sustainable in the long term, i.e. does quality suffer?
Do you think quality web content including medical education should be free? I note that the European Charcot Foundation is moving towards a subscription model.
Is providing free content sustainable in the long term, i.e. does quality suffer?
I think free quality content is sustainable provided it becomes opensource and the wider community engage, join-in and provide their time/content free of charge (e.g. Wikipedia). What do you think?
Open-source content vs. Subscription-based content
CoI: multiple
In medical education terms this is almost expensive as Mavenclad. Don't you get paid enough money already?
I don't think this is about personal compensation, but oiling the machine that makes things happen. For example, we at Barts-MS run this blog in our spare time. A lot of us have very little bandwidth for anything outside of MS and as a result we are at risk of burn-out and producing a poor quality product. Having enough money to hire a Editor-in-Chief and resources to manage guest posts will take the blog to the next level. Even Wikipedia that is open-source and free has had to resort to raising money to keep itself going. How we do this is debatable, but the debate is needed. Do we have sponsored posts, advertising, subscriptions, donations, grant applications, or do just keeping going with the current format and burn-out?
It may be non-profit and independent but it is sponsored by Industry"The European Charcot Foundation is an independent non-profit organization for advancing Multiple Sclerosis research in Europe. It is sponsored by private organizations, as well as by multiple sclerosis societies and industry".How independent is it really?
How independent are we? The best we can do is to declare our conflicts and let you the reader make the call whether or not to trust our content.
I'm pretty independent:-)…Maybe too independent sometimes 🙂
Prof G why don't you run a webinar on the same topic as Prof. Comi? You could ask for donations via your charity appeal button in kind. Go on I dare you.
Wikipedia looks for voluntary donations. If the subscription model money is used for research I for one will contribute. Why take the blog to next model? Why for something that's not broken? 7000 readers daily says something!
I'd be prepared to pay. But only if It was unbiased and objective. Not just a mouthpiece for pharma.
Paying to shut us up? Just a joke:-)
I suspect you are making a mountain out of a molehillIf you were to charge what model would you use? If you have a pay barrier then readership will fall and this will become less of a go-to blog. Voluntary donations is a possibility but who gets the dosh?If you accept adverts someone has to control adverts or do you use Google adverts. Once again who gets the dosh? Personally I hate adverts and keeping this advert free is a big plus Does it really need an Editor in Chief? There must be people at Barts who understand Social Media and running this could be included in their job description. Please try to retain its current integrity and the lively correspondence. None the less I think some sort of a succession plan is needed
I'm very happy to pay and donated to Barts MS charity at launch (although this has bigger project than blog funding to support right now!). Love open source software eg Libre Office and donated ridiculously small amount compared to cost of Microsoft. Yep, even made small donation to Wiki, must have felt compelled in a moment of honesty ;-)Could you go down the advertising route with subscription option for those wanting to avoid? Seems a popular model? These should be adverts (be interesting to see what Google would measure as popular amongst blog readers, we're a mixed bunch!) and definitely not Pharma sponsorship! That would keep blog free but enable you to pay an editor. Incredibly grateful to you all for the blog and appreciate you give up free time. An amazing source of quality, trusted information. Gives me hope and makes me smile 🙂
What about setting up Patreon?
Isn't patreon for the visual arts?
No, I see people outside performing arts displaying patreon on their blogs.
I would pay, as I value your work as extremely important for me to self-manage the MS, be up to date for the research going on and get your views. However, I discovered your blog when I was diagnosed with MS and knew nothing about this disease. Had I been diagnosed now, I wouldn't spend my money on a subscription blog and I wouldn't read you.Therefore, I believe that a subscription model wouldn't be a good idea.In addition, think of all the pwMS who struggle not only physically/mentally but also financially. They would not be able to afford it and you would then exclude them. I guess you don't want that to happen too.
dt 11.46 very true, I absolutely agree with you. No to subscription only. Therefore I'd favour a free blog with Google ads, or pay for with no ads. Loads of sites do this, Met Office weather is one I use regularly (but not so much that I'm put off by the ads!). The other common thing is limited functionality for free or pay for full access. Don't like that at all :(Or you can keep free and invite donations, like wiki.
Donations, Google ads or subscription, all would be fine, but I personally come here to connect with the teams expertise. And it is a real life/scientific need, it is not to get phycological support. The MS doctors unfortunately are very often inadequate. The knowledge about the disease is still way too fluid, hard to follow, hard to interpet -not for us patients, for science too. Even within the blog one gets dizzy, imagine the chaos a patient has to face outside. But I still believe the blog has scientific importance and not supportive importance -that could be easily done by creating a oftenly updated guidebook. Not all diseases need such blogs and not nesseccarily the blog will be needed in the future. But an Editor might cut the line to this fruiful interaction.It is a real problem for your lives and work, but I think this is the only issue one needs to think about.Thank you all for your dedication to MS knowledge all these years.
…As for the first hand approval of appropriate comments made by guests, you could ask for help from some of us that you feel you can trust. I believe many would be willing to help voluntarily if no money interests are involved.
This is a terrific blog and it's the one thing I read daily.On another note, this to me is causation.http://www.telegraph.co.uk/science/2017/10/06/brain-has-inbuilt-drainpipes-get-rid-waste-scientists-find/
I agree. That is why we need to sleep and to sleep well. Lack of sleep and poor quality sleep is a major risk factor for dementia.
In an ideal world, we would not have to pay a subscription, but you guys wouldn’t have to do it for free either. What would we need for such an ideal world? Funding from an irreproachable source with a track record of giving without strings. That would be nice, wouldn’t it? 🙂 Wellcome Foundation or similar? The trouble with seeking that sort of funding is that securing and maintaining it is a full-time role in itself, which is the kind of time/admin burden that you need like a hole in the head. So, no easy answers. What a surprise! In the meantime, thank you so much for doing what you do.
I imagine any solution will take time and develop/change in the process. As a first step, could you offer a Bart's internship for budding scientific writers? A keen young graduate wouldn't be editor-in-chief, but time spent mentoring an aspiring writer who could relieve you of some of the donkey work might be productive and point the way forward.
I think something like community moderators could be very effective for the comments section. I would have no problem with ads on the site BUT google will likely serve up pharma ads and as such you may want to have some sort of pinned post or disclaimer to provide transparency on how the ads are selected to prevent the tinfoil hats from taking over the comments section. I think a paywall is a bad idea, but paying to remove ads or a donation system like patreon could be quite effective… just my 2 cents.
Given MS treatment – access to Nurses, regular appointments, regular MRIs and access to treatments is poor in the UK I think we have bigger fish to fry. So NO i would not pay.
Why don't you what the Guardian does? Since you’re here …… we have a small favour to ask. More people are reading the Guardian than ever but advertising revenues across the media are falling fast. And unlike many news organisations, we haven’t put up a paywall – we want to keep our journalism as open as we can. So you can see why we need to ask for your help. The Guardian’s independent, investigative journalism takes a lot of time, money and hard work to produce. But we do it because we believe our perspective matters – because it might well be your perspective, too.I appreciate there not being a paywall: it is more democratic for the media to be available for all and not a commodity to be purchased by a few. I’m happy to make a contribution so others with less means still have access to information.Thomasine F-R.If everyone who reads our reporting, who likes it, helps to support it, our future would be much more secure.Support the Guardian