Diabetes Social Media: PWD to Follow on Twitter

After my recent (and last) dLife article, where I interviewed Cherise Shockley about the Twitter and Diabetes, I thought it would help to share a few other accounts of people with diabetes (PWD, in case you wonder what the title stands for) on Twitter.

The list is in alphabetical order. I am sure I missed people, so if you don’t see here an account you think belongs in here, please leave a comment letting me know:
@A_Sweet_Life
@AbbyBayer
@am3366
@AMBlass
@AmDiabetesAssn
@annbartlett
@ArdensDay
@Arnold_and_me
@askmanny (that’s me) :-)
@babssoup
@badpancreas
@BadShoe
@BernardF
@betabuddymom
@bloodsweatcarbs
@BluntLancet
@bradford_g
@CALpumper
@cerichards21
@Colcalli
@CureT1Diabetes
@Dayle7
@DiabeTees
@Diabetes_DRI
@diabetesalic
@diabetesdaily
@DiabetesHF
@DiabetesMine
@diabetesmyths
@DiabetesSocMed
@diabetesUK
@DiabeticFury
@Diaboogle
@diaTribeNews
@dLife
@DMomBlog
@dream4muse
@elgringoinspain
@Elisa1840
@funlovingtype1
@GG2Diabetes
@ginacaps
@GingerVieira
@HopeWarshaw
@iam_spartacus
@iDrevolution
@iGotThaSuga
@ilanalucas
@instructionsni
@irondman
@J_Roc650
@JaimieDOC
@Jamie_Na
@jdavis_harte
@JDRF_Intl
@JDRFAdvocacy
@JDRFQUEEN
@jeffmather
@jenloves2travel
@jessofmeandd
@JoslinDiabetes
@KarenBittrSweet
@karend1
@KayRitzdorf
@KellyRawlings
@kahoffman
@khurtwilliams
@kittiecouture
@laur_n
@leeannthill
@LindasSweetBoy
@logfrog
@Look4acure
@Lyrehca
@Mamapancreas
@MarieBe
@mariruddy
@MHoskins2179
@MrsCandyHearts
@MsMegan777
@mydiabeticheart
@ninjabetic
@our3Dlife
@PumpingPrincess
@rpederse
@sarahmart
@scottkjohnson
@sixuntilme
@sstrumello
@StaceyDivone
@staceysimms
@stephiedichiara
@StPancreas
@Strangely_T1
@STroyCrow
@Sugar_Nova
@sweetlyvoiced
@tailsofrachel
@TeamType1
@teamwild
@thepoordiabetic
@tinashaye
@tmana
@triabetes
@tudiabetes
@txtngmypancreas
@woodonwheels
@Wyldceltic1

For more people with diabetes on Twitter, join:
http://www.tudiabetes.org/group/twitterbetics

Diabetes hashtags to watch on Twitter:
#bgnow: to share your Blood Glucose NOW.
#bgwed: to share your Blood Glucose on Wednesdays (in the same spirit of #FollowFriday).
#dblog: diabetes blog posts.
#DSMA: pertaining to Diabetes Social Media Advocacy topics.

Estas son algunas cuentas de Twitter sobre diabetes en español que considero que vale la pena seguir:
@Carolina_tipo1
@DiabetesPares
@estudiabetes
@fmdiabetes
@midiabetes

Worth reading:
10 People to Follow in Social Media + Health

10 Ways To Clean Up Your Twitter Feed

Shortly after I wrote 5 ways to follow 5,000 people on Twitter last year, it dawned on me that I was resorting to all sorts of tools and hacks to “follow” people, when I didn’t really need to follow them. Here are some of the lessons I have learned as I have gone on a pruning spree, from “following” nearly 5,000 people on Twitter to just over 400 people in a little over 6 months.

  1. You can start pruning by removing people who no longer use Twitter. They are not really the ones adding more noise to your Twitter feed (after all, they are no longer updating), but it will give you a sense of accomplishment. You can use a tool called Your Tweeter Karma for this.
  2. You will soon find that there’s only so many people you can unfollow because they are no longer using Twitter. Where to go next? You could argue that the Mashable’s and the RWW’s of Twitter are must-follows and that is true to a certain extent. After all, they are valuable sources of information for people on social media (about social media?) But over time, they have become such “celebrities” in their own right that tons of people retweet their content. So, do you really need to follow them? I argue that, if you follow the “right” people, you don’t need to follow these accounts too. Who are the right people? For me, examples of this are folks like @heykim, @svartling@johnhaydon and @JoyceSchneider1. They are content hoses, but they do an amazing job at curating high quality tweets.
  3. I also have found that unfollowing people who tweet their Foursquare location a little too often comes in handy. I hope I am not alienating too many people by my iTunes “likes” which I tweet once in a while.
  4. I am not a big fan of drama: and guess what! Drama takes up some important real estate on Twitter when it breaks out. So, when I see drama unfold in front of me (I mean drama as in personal exchanges with insults flying back and forth, between two people on Twitter; not drama as in the madness going on in Egypt), I typically unfollow both persons. I really hope these folks resolve their personal disagreement… just not in front of all of us. If I can be of assistance, perhaps they will message me in some other way.
  5. You don’t need to follow EVERY news outlet out there. Specially, if you don’t do the same in real life. After all, there’s only SO many news to break and, except for niche media or SERIOUS news organizations, they all cover the same news. So, that is to say: follow the news accounts you really care about. Just because you can easily follow all of them, doesn’t mean it’s a good idea. Also note most news outlets now have multiple Twitter accounts, so you may be able to really narrow down what aspect (section) of their coverage you want to see take up space on your Twitter feed.
  6. If you love a particular product/service that has a presence on Twitter and they use their Twitter feed just to push content (“me” talk), without interacting with others, don’t follow them! If you already do, unfollow them: they obviously don’t care about you that much, so why should you care about them?  You can express your love for the product by continuing to buy it and, if you REALLY are into it, you can let them know through Twitter or contacting them via email that their use of Social Media is not really being that social.
  7. On a similar note than “me” talk-only products/services fall the vast majority of celebrity Twitter accounts. One exception that I love is @Alyssa_Milano (and I am sure there’s a few more!) She not only follows other people: she replies and RT’s other’s content that she cares about.
  8. Remember there is a place for lists. You don’t need to follow on Twitter every single person you meet. Perhaps someone is an expert on games or mobile technology and you may have a need to hear more conversations about that in the future. Add them to your “Games” or “Mobile” list and move on.
  9. If you manage multiple accounts, you don’t need to follow them all… not forever, at least. I have direct/indirect access to nearly 10 accounts. I follow only a few of them.
  10. Last, be brave! You may find that the number of people who follow you drops… As long as you have something useful to share (your own content or RT’ing other material) you will remain relevant in the eyes of some. And that is fine. And if you are no longer worthy of being followed, then so be it. Twitter is not a popularity contest: to me, it’s become one of my top tools to stay plugged into the latest in news, diabetes, nonprofits and technology. And that means you need to do a whole lot of listening.

If you have found this useful, please share it with others and follow me on Twitter: @askmanny. If you thought it wasn’t useful, don’t tell anyone. :)

10 People to Follow in Social Media + Health

Healthcare is a broad sector and social media is even broader. But it turns out that not too many people “get” the two and make it possible for others to do the same thing. So I thought I’d share ten people on Twitter who I think do a very good job in different ways of explaining how social media and health go together.

This is by no means a comprehensive list (it means, I am sure I left someone out so please don’t feel offended if I did) but it’s just a list of folks I particularly find useful to follow and read when it comes to Social Health, the intersection of Social Media and Health. I took the liberty of copying their Twitter bios as they stand today.

@jonmrich – Jonathan Richman, “Former pharma guy now preaching digital to every pharma & healthcare company that’ll listen. Happily spending my free time w/ my amazing wife & daughter.” I had the chance to meet Jonathan in 2009. Today, in my opinion, he is the go-to person for any group that seeks to “GET” social media and health.

@SusannahFox – SusannahFox, “Internet geologist. Health care gadfly. Social to a fault.” As Associate Director of Digital Strategy at Pew Internet, her title is nowhere near as cool and knowledgeable as she is to meet and listen to in person.

@KevinKruse – Kevin Kruse, “President, Kru Research & Editor, E-Patient Connections newsletter, focused on how to reach & educate digital health consumers. ePharma mktg, health 2.0.” I had the chance to meet Kevin in 2010. His ePatient Connections conference is a must-attend for all people interested in impacting this sector.

@whydotpharma – Silja, “Passionately believe pharma can create better patient-focus through social media Co-founder of#hcsmeu Healthcare and Social media in Europe tweet up.” I had a chance to meet Silja in 2009 in Switzerland. She gets it WAY from before the time she was helping others get it!

@swoodruff - Steve Woodruff, “The real-time, 360-degree Steve Woodruff. I interact here. Want pharma/healthcare?@impactiviti. Business? @connectionagent….” Not too many people listen as attentively as Steve. He really has mastered this art and turns it into lessons for all around him to learn.

@iftfhealth – IFTF Health Horizons, “Health Horizons at Institute for the Future scans for signs of change over the next 3-10 years for a deep understanding of global health. Creators of BodyShock.” I first heard of IFTF while I still lived in Palo Alto, where they are based. They are a brilliant think tank of people that think about the future.

@wegohealth – WEGO Health, “WEGO Health is home to Health Activists. These influencers, organizers, leaders and contributors are passionate about helping others lead healthier lives.” I first met Jack, their CEO,  in 2009. They provide an extraordinary space for health activists to do what they do best.

@boltyboy – Matthew Holt,” THCB, Health 2.0; Chelsea fan; husband; father in a few months.” I have known OF Matthew since 2007, when then the first Health 2.0 conference took place. I finally met him at Health 2.0 in San Francisco in 2008. I still struggle understanding when he speaks so I prefer to read him. :)

@EndoGoddess – Jen Dyer MD, MPH, “Stylish pediatric endocrinologist, researcher, former Texan who loves NYC, beginning foodie who believes in the power of balanced nutrition to prevent disease.” Not too many doctors (yet) get the importance of social media in healthcare. Jen is WAY ahead of the curve. She’s out there on Twitter and I was glad to meet her in 2010!

@shwen – Shwen Gwee, “Founder: Social Health (sxsh.org), Social Pharmer (SocialPharmer.com), Med 2.0 Blog (Med20.com)” As knowledgeable about this space as he is a nice guy to chat to. Had the chance to meet him at the 2010 ePatient Connections conference. Update (05/12/11): Shwen is joining the health practice at Edelman as VP of Digital Health.

P.S. Other than Jen Dyer, I have intentionally left out people from the DOC (Diabetes Online Community). I wanted this list to be useful to everyone, in the diabetes space or not.

Read a list of People With Diabetes to Follow on Twitter.

5 ways to follow 5,000 people on Twitter

1. Don’t “follow” all 5,000 people. Pick up on conversations as they cross your Twitter home feed.
2. Follow people you care about. If you do this, you increase your chances of finding relevant conversations you care about whenever you take a look at your Twitter feed.
3. Look at who the people you care about are following: you may find some great people worth following there.
4. Create, maintain and use Lists, to listen more intently to a particular topic or within a particular vertical.
5. Take advantage of saved searches.

For more tips, read the fabulous post “Follow the Few To Get To the Many” by @kanter (someone you should follow, BTW!)

What happens when you don't tweet?

I was gone for a few days, taking a vacation around my birthday last week… this is what happened to my Twitter account.

I am not saying you should tweet a lot every day. I am just saying, when you don’t people stop following you. Who? Those who NEED you to show signs of Twitter “life” (i.e. fake followers) every day. Should you care? Not really…

Should you NOT tweet at all ever? Not either. It may actually make others think (even your friends following you on Twitter) that you forgot about your Twitter account. :)

Los tweets de Chavez

Me parece interesante el fenomeno de Chavez en Twitter… por dos razones:

  • Si Chavez mismo esta twitteando, realmente el pais anda a la deriva, porque el hombre esta mandando mensajes mas o menos a razon de 3 mensajes por minuto.
  • Si alguien mas esta twitteando por el (lo mas probable), es tan fake la vaina que da pena… pero sirve de entretenimiento, digo yo…

Un pana me mostraba hace un rato esta serie de tweets de una zuliana rogandole a Chavez por una casita, pidiendole que le respondiera.

En fin… aqui les dejo un ejemplo de los tweets de @chavezcandanga, para que se deleiten.

Social Media and Community: not either or

From luc legay

Maybe no more than a year or two ago, I used to think of Twitter and Facebook as ways to drive traffic to our “main” online communities: TuDiabetes and EsTuDiabetes. The hope was that we could reach out to people interested in what we had to offer in either community on these other growing social networks and try to get them to visit and sign up as members…

Time passed and we realized that was happening, but not to the extent that we were hoping. While some people would visit and sign up for our social networks, something else that was VERY interesting was going on. If we shared a link to an interesting discussion going on in, say, TuDiabetes and included the title of the discussion on our Diabetes Hands Foundation Facebook page, if the topic was interesting, the discussion didn’t depart the page. Fans (or “likers“, I guess, would be the new term) on the page would engage in discussion DIRECTLY on the page and not leave Facebook at all.

Think of it: the convenience! You simply have to monitor one site (or few sites, maybe), keeping an eye on your main feed, and relevant elements are presented to you, on which you can jump and participate commenting about them, liking them or sharing them with others. It’s simple… and it’s brilliant!

Something similar happens on Twitter, though perhaps not in a way that is as easy to visualize because Twitter is less structured.

So, next time you are wondering whether your community should live on a space separate from Facebook and Twitter or be a part of these growing spaces, don’t think either or: you may already have a community going on in two or all three places.

Privacy: How Much Is Enough? Or Too Much?

Earlier today, I was reading the post by my friend Kerri from Sixuntilme where she refers to how her views on privacy/disclosure have evolved since she became pregnant. It dawned on me that I have also changed how much I value my privacy online, perhaps not since we had our son but more in the past couple of years.

Back in March 2007, we started TuDiabetes, a social network for people touched by diabetes. At the time, I was already fairly comfortable in social media, being a member of more than a dozen networks. This meant, I opened myself up quite a bit… perhaps too much.

Below are some of the things I do when it comes down to my privacy. Why? Because there are enough people out there that don’t have the best intentions in the world. So that doesn’t mean I have shut up and stopped participating  in social media altogether (those who know me know that NOT to be the case -if you don’t know me, Google me and you will see what I mean). It just means to be mindful when you share something online, withholding what you don’t feel comfortable sharing with people you don’t know.

  • If I am traveling, for vacation or business, I don’t announce it ahead of time. Even more so, most of the time, I don’t write ABOUT it while I am away.
  • If I am at a place at a given moment, I may write about it (a restaurant or a venue) AFTER I leave, not while I am there. That is why my use of FourSquare was so short lived.
  • I only give my personal address to people I know (in real life) in person or people who need to know it (like someone sending me a personal package).
  • On Twitter, I follow everybody I find interesting and relevant in connection with one or more of these: Venezuela, diabetes, nonprofits, social media, music, etc. But on Facebook I only befriend people that I know, either personally or through enough of an online correspondence, to make me feel comfortable sharing with them more than I do on Twitter.
  • On Facebook, I have a list of Family and another list of panas (my real-life buddies). Any personal photos (where anyone in my family appears) I only share with those two lists.
  • On LinkedIn, I typically only accept invites from people I know or have worked with before.

Some of these list items have been cause for some people to get upset at me: I insist -it’s nothing personal… just my own privacy policy.

Do you think I am too paranoid? What is your online privacy policy like?