Social Media - Community advocacy fail. Why?

[Bob]

That list of tweets by journalists is super handy. Thanks for taking the time to put that together, I am going to try and work my way through that list thanking them.

 

[snowathlete]

As I mentioned to Kati, you can use private Twitter lists to replace your main Twitter stream as your main stream, or in addition to your main Twitter stream - this avoids the need for a cull. Lists can be used so you won't miss the Tweets from the accounts that you'd like to follow closely. I find private lists very helpful - and they're worth playing around with if you use Twitter regularly.

Thanks, I'll be taking a closer look at that.

 

[catly]

I also haven't gotten a chance to read this whole post but have to say that I really like twitter. I followed all the news, political, health related organizations I could think of including all the NIH, HHS, CDC etc. institutes as well as major healthcare providers. I don't read much of my twitter stream, instead I search #MECFS, #SEID almost every day and retweet all tweets I support. (warning, read links to tweets before retweeting do you don't end up endorsing something you don't mean to). For important news highlights, I tweet my usual round of NIH people, congressman/reps, e-cures reps etc. Almost all articles I read that I like, I tweet and include my regular round of favorites.

I only use facebook for my close friends and almost never use it for ME advocacy. If there's a link in a facebook post I like, I will tweet it.

Twitter is really simple and easy to use for advocacy. No need to read you twitter streams- use the # to search and retweet as you see fit.

Finally, I also follow back EVERYONE who follows me, even if it's not really someone I'd be interested in following, I just figure that it's important for as many people to read my tweets and retweets as possible.

Happy TWEETING everyone.

 

[Kati]

Thanks Kati. Have you tried using private 'lists' on Twitter yet? You can create your own lists, and they work in the same way as your main Twitter stream, but you can choose who to place into the list. They can help if you follow a large number of people but you want to focus on a smaller number of Tweeters for regular updates or for specific issues. If it's a private list, no one knows if they've been placed in the list, or excluded, so it's a useful tool that you can use without upsetting any of your followers.


Thanks Kati.

What do you mean by "threads pinned with social media alerts"? Do you mean to set up a dedicated forum thread into which we can place important social media alerts for sharing? I think that could be a very good idea.

Yes i meant perhaps creating a 'social media action' thread here on the forum.

Also perhaps a suggestion to think about (my health will not allow me to do anything for the next few months) would be to organize tweet chats that are ME related, to not only gather patients, but to hopefully engage physicians, med students, researchers, etc.

 

[beaker]

Actually, it does make sense because people like to see their tweets retweeted whoever is doing the retweeting. It's about numbers. The person who sent the original tweet will notice all the retweets and favourites. For example, each interaction is recorded and registered by the Twitter analytics facility, and the info is fed back to Twitter users. The tweets with the most interactions are highlighted. So all interactions count.

If you retweet you can also add a quote to it. If it is information that I think I can pass on to Congressional reps I just
@ them in the place to quote. In you thread on the journalists bob, I put out a huge list of senators and congress persons who are on committees that over see health and appropriation committees as well as leadership positions.
That is the most important. To get it out to bigger audience. Now that we have those journalists, you can retweet them important updates. You can go to that thread and just cut and paste the names to your tweets.
I need to organize them more but haven't had the energy.
But they are in a way so that they will fit. I think it takes 11 or 12 retweets to get them all.

Yes Cut and paste still takes time and energy, but even if one person does it that retweet can be favorited and retweeted. ( or just pick a few names/group of names and do one ) That is not being done. I have been frustrated by that. I have posted here w/ links to my tweets to the aforementioned government reps and I maybe get 1 or 2 retweets and favs.

@Bob as for your initial post -- I got about half of those you posted on my account. The reason the ones I missed t weren't retweeted or fav by me is simply I missed them. There are days where I simply cannot log on.
There are other days where I certainly can't see everything on my account. (ETA: I need to learn to org. my stream better. I've been learn as I go)
I think the idea of a twitter group to somehow point out impt. ones to retweet/favor is a good idea. Those won't be missed as much. I have been working on the journalists one at a time to retweet w/ names of gov reps on their articles. It's not too late to get those posts going. I had a nice reply from one of the journalists.

I keep all my stuff --- environmental and political and other interests on one account. I figure I can reach people outside the community / make better connections that way. Plus too hard for me to deal w/ 2 accounts.

As @Bob or @Mark said You never know where a reply or tweet that someone else will like will get you someone new to take an interest.
Sometimes it feels as though we are our own audience and that is good to connect but doesn't serve advocacy goals.

And also perhaps maybe peeps on PR would be willing to share their twitter IDs. so we can find each other easier and retweet/fav others' ME posts.

I had some other points which have currently "left the building"
But I would certainly be willing to be on a group thing.
That way when one is down and crashed others can pick up and maybe save a link to the most important ones so they can be picked up by the crashed later.

 

[beaker]

I think part of the problem has already been highlighted - many forum users are not going to be Tweeting. To me Tweeting is something people with busy, energetic, work centred lives do, or celebs with loads of followers. A middle aged woman who lays in bed all day is not really my notion of a tweeter - and that is me!

I sometimes go on twitter to follow tweets from a conference, but that is about it. I think for most PWME, being active on a forum or on FB is more than enough effort - I personally couldn't deal with yet another social media platform, or with learning how to use it. PR members particularly have a huge forum and community to get their heads round that can take up ALL available energy.

Being a rural, housebound, middle aged mum who doesn't work or socialise means I would have zero followers and then wouldn't really know what to do from there -I imagine many of the surrent M.E followers are in the same boat. Mayev they signed up for something lieka conference, or to read M.,E updates from say Invest in me but don't really tweet themselves.

Its the same old problem when you are trying to get seriously ill people to do it all for themselves...

BTW I think your ideas Bob are all good - my remarks are not a criticism or negative, just my attempt to answer ypur question. sorry for typos - brain not firing today.

Justy, you could be describing me ! ;-) But I find twitter easier to follow than this forum most days.
I went from zero followers to over a hundred in the past few months. I started following others, retweeting and liking their tweets. Adding replies.

And to reiterate and also to @adreno you can quote a retweet and target it to someone ( your congressional rep or if in UK the equivalent ) So you aren't retweeting to no one. In fact you are doing more this way by making sure it gets to someone you want to see it. That doesn't mean you have to do that w/ every single tweet, but the ones w/ info and news that you think it's good for them to see.
imo, targeting officials is one of my top priorities.

 

[beaker]

As I mentioned to Kati, you can use private Twitter lists to replace your main Twitter stream, or in addition to your main Twitter stream - this avoids the need for a cull. Lists can be used so you won't miss the Tweets from the accounts that you'd like to follow closely. I find private lists very helpful - and they're worth playing around with if you use Twitter regularly.

Thanks for pointing this out @Bob. I have been learning as I go. This could be very helpful for me.

 

[beaker]

Here is a tweet by dr. batemen looking for feedback. Wanting ideas for new center. 10 retweets, 8 favorites and about 9 different persons reply.
That's sadly what a high turnout on twitter looks like. If you missed it, I'm sure she'd appreciate your input.

 

[adreno]

I appreciate that you can tag people on twitter, and reach a wider audience. But, social media is more than retweeting or favoriting. It is about replying, commenting and posting original content. Interacting, engaging, and building a following. And this will take more time and effort. Without creating interesting content, you are not going to gain a lot of followers.

People (as I hear it) seem to argue that followers are not that important. I disagree. Remember that there are algorithms in place that decide the impact of tweets. And when you retweet a tweet to a representative or organization, remember that they (like people here) are likely receiving more posts than they can read. So it becomes about priorities and impact.

Whose tweets are influencers and decision makers going to be reading, engaging with, or reacting to? It is likely to be high impact twitter accounts with many followers that can gain influence this way. So the way I see it, it would be better to have a team of dedicated people working on building one (or a few) high impact accounts, rather than trying to flood the twitterssphere with retweets from lots of low impact accounts.

 

[Jenny TipsforME]

This is a very interesting discussion. Personally I spend a considerable proportion of my energy budget on ME related tweeting. I'm @TweetTipsforME over there.

I see a lot of Chilli Challenge tweets and don't RT many. It was really surprising to see this discussion about people not sharing it. I had the impression there's loads of RTs. Scrolling through twitter it is a split second, almost subconscious, decision process that probably needs some unpacking. For me this may/may not include:

1. They are usually videos. I check things before RT and may not want to watch a video at the time (on consideration people eating chillis is uncontroversial and I could RT without watching!).
2. My "followers" will have seen this from the same source as me
2. My "followers" may be bored by all these fundraising tweets
3.My followers don't need awareness raising they need symptoms relieving

I had never considered that RTs are thank yous though. I have been too focused on it as a method of sharing information. Of course the person most likely to see your RT is the person the tweet was from (or if you mention someone in the tweet). It does provide an emotional lift to see you've been retweeted or mentioned. I will look out to do thanks RT from now on.

I don't see tweets from respected journalists with an accurate depiction of ME. If you mention me in tweets sharing articles I'll read them and most likely RT.

In terms of setting up a cause related twitter account this is what I've done but not with an advocacy focus. I want the account to be helpful to pwme and similar conditions. Sometimes I express my own opinions and angst but this is unusual.

Having set up a ME/spoonie specific account I had a definite plan in mind:
-share other people's tips
-generate tips by asking questions
-get people to read my blog posts on www.tipsforme.wordpress.com
-share new research findings
-share some awareness raising activity
-be mostly positive about what can help now

I think you need some focus. This is very different from a personal account where I'd RT whatever is of interest to me.

My current followers number over 1200 but these are almost entirely spoonies or professionals working in the area. They already know a lot about ME. I consciously limit how many advocacy tweets I send, unless it's a big awareness day, because I know this will be preaching to the choir. If I RT usually only these people see it. The usual hashtags are varied (#pwme #MEcfs #MyalgicE #spoonie #NeuroME #MyE #SEID) but will still only get to people looking for those #. In other words a wider audience who already know about ME! Sometimes I use # I think others might check eg #health #nutrition #insomnia if relevant.

There are various tools I've used to automate the process. This means that tweets can appear while I'm sleeping or unable to focus my eyes. Very useful for social media spoonies!

Buffer: this site/app allows you to schedule tweets (and Facebook updates etc). You can also Share websites using Buffer

IFTTT: which stands for If This Then That sets up something to happen automatically if another thing happens. Eg if you share on Facebook it shares the same thing to Twitter. If you like a YouTube video you share it on Twitter. I've taken the quirky approach to add tweets with weather changes. These tweets can get repetitive if the weather is unsettled! I can share recipes if anyone else wants to do this. In theory you can have an entirely automated account but I don't know how many followers you'd get!

There are also ways to send messages to new followers and tools to advise you who to follow. The easiest way to get followers is to follow people with the same interest. If you look at my Lists some of them are automatic eg MEcfs includes everyone who tweets with #MEcfs atm. You could start with following some of those people.

Perhaps I should turn this into a blog post?

[BTW if you look at my twitter favourites there are lots of tips from other people. I try not to sensor this and if someone sends a tip to @TweetTipsforME I'll favourite and RT. The only exception is you can't make money from what you're advising. My favourite list is themed to only include tips. I also have it setup so these favourited tweets automatically get added to my website (via IFTTT and Google spreadsheet). Someone could set up similar but just advocacy themed.]

I'll go back and share some of the mentioned tweets...

 

[Bob]

I had never considered that RTs are thank yous though.

Usually I would simply favourite a tweet as an acknowledgement or thank-you. We don't want to spam our followers. But occasionally I'll retweet simply to acknowledge the importance of a tweet.

 

[Bob]

People (as I hear it) seem to argue that followers are not that important. I disagree. Remember that there are algorithms in place that decide the impact of tweets. And when you retweet a tweet to a representative or organization, remember that they (like people here) are likely receiving more posts than they can read. So it becomes about priorities and impact.

Whose tweets are influencers and decision makers going to be reading, engaging with, or reacting to? It is likely to be high impact twitter accounts with many followers that can gain influence this way.

@adreno, as a long-term user of Twitter, i don't agree with your assessment of it.

Yes, high profile accounts have more impact than ordinary accounts, but Twitter is surprisingly egalitarian. Sometimes I wonder if it's the most democratising invention since the printing press. I'm probably over-egging things slightly there, but I am constantly impressed by its power and adaptability. It gives a strong voice to many who would not otherwise be heard.

I've been in many brief conversions with public figures, and I've been retweeted by public figures, without going to any special efforts to get noticed. But perhaps the most empowering thing about Twitter is the community of ordinary and like-minded people that you enter into.

BTW, all the crowdfunds are run via social media, so that's a tangible effect of the power of social media. And the crowdfunds are run and propagated by a community of ordinary people without the benefit of high profile tweeters helping us to get attention.

But the only reason I use Twitter is because I enjoy it. If we happen to build a strong community at the same time, then that's a great bonus.

I'm not suggesting that any of us, as individuals, will necessarily have a huge impact on the world by using Twitter or Facebook. (But many individuals have had a huge impact on the world using social media.) Instead, I'm suggesting that numbers matter when acknowledging or thanking people who have helped our community.

So the way I see it, it would be better to have a team of dedicated people working on building one (or a few) high impact accounts, rather than trying to flood the twitterssphere with retweets from lots of low impact accounts.

That's an interesting idea.

 

[Jenny TipsforME]

Yes, high profile accounts have more impact than ordinary accounts, but Twitter is surprisingly egalitarian.

My hunch would be that the most effective strategy ( if you could organise people) would be to have one account eg @MEcentralhub that people share to when they find/write relevant tweets which are awareness/fundraising/thanks focused. @MEcentralhub builds lots of followers and RTs what people share with it (no pressure to generate content). If you are brave the retweeting could probably be automated. I think it would then be when all the little accounts RT again from @MEcentralhub that it would create some noise on twitter.

What Tom Kindlon does is a bit similar to this.

 

[Bob]

OK, we've had a few ideas in this thread, in terms of what we could do collaboratively to make better use of social media. See what you think of these ideas, and if you have any further thoughts about them...

1. Have a permanent 'social media action' thread on PR to highlight important social media posts. (I think Kati suggested this.) (I think it's a great simple idea, and it would be easy to maintain.)

2. We could also have a separate thread (or it could be the same thread as above) simply for highlighting interesting social media posts. I often see stuff in Twitter that I'd like to highlight on the forum but I can't be bothered to start an entirely new thread just for a snippet of information. This doesn't exactly address the issues I've raised in this thread, but it could be a helpful addition to the forum, and could help widen our social media impact.

3. Perhaps set up a collaborative Twitter account (as adreno suggested) that could be used e.g. simply to highlight Twitter posts that need to be responded to by our community. Whether that's by favouriting, retweeting, responding with a 'thank-you' tweet, or some other sort of action. This could be an independent account (e.g. Jenny suggested @ MEcentralhub) or an official 'Phoenix Rising Action' account.

4. As Mark has suggested, think about what could be done with the existing Phoenix Rising Twitter account and social media. A group of us could get together to help run the account to highlight all the action that takes place on Phoenix Rising. And possibly to work towards it becoming a news hub. (But creating a news hub is perhaps a bit ambitious because of the amount of ongoing work and commitment involved. We all seem to run away from commitment to ongoing/indefinite projects, myself included.)

 

[beaker]

I appreciate that you can tag people on twitter, and reach a wider audience. But, social media is more than retweeting or favoriting. It is about replying, commenting and posting original content. Interacting, engaging, and building a following. And this will take more time and effort. Without creating interesting content, you are not going to gain a lot of followers.

People (as I hear it) seem to argue that followers are not that important. I disagree. Remember that there are algorithms in place that decide the impact of tweets. And when you retweet a tweet to a representative or organization, remember that they (like people here) are likely receiving more posts than they can read. So it becomes about priorities and impact.

Whose tweets are influencers and decision makers going to be reading, engaging with, or reacting to? It is likely to be high impact twitter accounts with many followers that can gain influence this way. So the way I see it, it would be better to have a team of dedicated people working on building one (or a few) high impact accounts, rather than trying to flood the twitterssphere with retweets from lots of low impact accounts.

I don't think it has to be either/or. Why not both ?

 

[jimells]

Now, I know that the forum is also social media - but the forum has structure and I understand it.

And our forum wasn't created to exploit and spy on its users.

 

[Eliza]

On Twitter I concentrate on getting certain info read by doctors, med students, Medical associations, ...

It's by far our best tool to get good info spread in their midsts. Countering the bad info they got for years and years.

Other messages only go to PWME.
But we need to go 'out' our community too. In a friendly way. Making them curious. And not always refer to ME immediately.

The Newton research for example got the attention of 'neuroscience'.

Info for GP's (call for severe ME patients in the UK) got their attention too. A few GP's started following me.

Be Factual, make GP's an ally instead of the enemy. They get a lot of false info don't they? We can counter that via Twitter.

And my other rule: don't 'flood' them with info but keep a steady Pace. Don't make them get tired of us.

Oh, and i'm from Belgium but i concentrate on US and UK. Just bc change there Will eventually get change over here. And bc twitter is intenser overseas.

 

[JPV]

I don't know how other people feel but because of the stigma associated with this illness I don't want to be connected with it using my real identity anywhere online.

If others feel the same way, perhaps this why you don't see much advocacy on social networks.

 

[Bob]

I don't know how other people feel but because of the stigma associated with this illness I don't want to be connected with it using my real identity anywhere online.

If others feel the same way, perhaps this why you don't see much advocacy on social networks.

Hi JPV, I think I have given the wrong overall impression in my opening post, because I was focusing on a narrow issue, and highlighting a few specific advocacy fails, and because I was having a bit of a rant, and so I think I failed to give a rounded picture. I had assumed that forum members would be more familiar with social media than most of us appear to be, so I didn't provide the full context.

More broadly speaking, we have quite a lot of engagement and advocacy happening on social media. For example, many of the crowdfunds focus on using Twitter and Facebook to get their messages out. BTW, you don't have to use your real identity on social media. Many don't. You can be entirely anonymous.

 

[Snowdrop]

Oh boy, I don't know why I'm posting, I'm not sure I completely understand all this but as regards the idea of a news hub it occurs to me that if a protocol is set up to define the parameters of submission then perhaps if enough people sign on the workload would be not too bad.
The only thing needed then is a few designated 'moderators' (new moderators not the ones already overworked) of that specific thread to ensure the news fits the purpose. There could be a delay to posting like there is for new posters who want to post a link.

If people were clear as to what was wanted for the thread anyone could post -- with moderation. But having a number of people who are willing to ensure that there is some content would be good and the more the easier for everyone.

As for twitter. Clueless here but I am told I can do it from my computer and so will be happy to learn if someone points the way as to what content needs tweeting.