Category Archives: Health, Healthcare, Support, Science

Concerns & Clarification on the FDA Guidelines for Social Media (#FDAsm)

FDASM: FDA on Social Media

Last Tuesday afternoon, there was a Twitter chat on the new FDA guidance on social media that was hosted by the medical librarians group (#MedLibs), but which engaged an audience that also included healthcare professionals, lawyers, and communication specialists. It was a very interesting chat that touched on concerns, assumptions, misunderstandings, clarifications, and resources. You will find many of these excerpted from the full conversation and highlighted below. First, though, here is a high level summary.

Concerns included the potentail for a “chilling effect” that might impact on education, innovation, professional and patient public communications, research and clinical trial recruitment; responsibility (who is responsible for what/when/where/how with respect to health social media communications); effectiveness of social media controls for their intended purposes and the costs/benefit assessments; the role of identity, honesty, and transparency in health social media communication; and whether the guidelines will promote inclusion or foster exclusion of relevant voices in useful conversations.

Clarifications sought: plain language summaries of the guidelines; description of the potential and expected impacts on various communities of practice, including health education and patients; the relationship and responsibilities of employers and employees in their social media identity management and communications; and the issue off-label use conversations outside of pharma entities.

Clarifications which appeared during the chat (but which are note from the FDA, and therefore not the authoritative word with respect to these issues): who is covered by the guidance; community and individual efforts to create plain language distillations of the guidance; context; and a reminder that freedom of speech does not equal freedom of consequences for that speech.

For Medical Librarians: role for medical librarians in supporting and demonstrating best practices in Twitter chats; role for medical librarians in supporting education around the FDA’s guidance for their institutions as well as for patients and the public; and a caution about medical librarians being potentially excluded from social media as part institutional image controls as well as potentially as an impact of the guidance.

Takeaways: how to format an FDA-style tweet; avoid creating branded accounts for free conversation; encourage individuals to create personal accounts that are not branded and are distinct from the brand; consider correction of health misinformation as an opportunity; avoid perception of “practicing medicine” on social media, but discussions are alright; consider commenting on the FDA draft guidelines before September 17.

In addition, the conversation included discussion of best practices for identifying tweets as representing personal opinion, as well as a rich collection of resources.

CONCERNS

CLARIFICATION NEEDED

CLARIFICATION RECEIVED

FOR MEDICAL LIBRARIANS

TAKEAWAYS

FURTHER QUESTIONS

RESOURCES

Hero Tales at We #MakeHealth Fest

Reblogged from Health Design By Us



Make Health: Personal Genomics Hero Story http://www.slideshare.net/perplexity/make-health-personal-genomics-hero-story

I was given the honor of closing remarks at the We Make Health Fest, and was pretty nervous about it frankly. I was supposed to do something on personal genomics along with the closing remarks. The very idea made me feel dizzy. I thought about it a lot for weeks without having any ideas I felt good about. One of the ideas was to make the whole thing a poem. Then I thought haiku for each section of the talk. Then I started outlining the talk and realized it sounded kind of like the Joseph Campbell’s hero’s journey, the whole Hero With a Thousand Faces idea. Last summer I was also taking the Coursera MOOC on Fantasy and Science Fiction in which we talked a lot about Propp’s functions of folktales. With all that, I got the idea to tell about personal genomics in my life as a kind of folk tale, and to talk about that experience as a representative process. That was the idea that struck roughly 24 hours before the event started. Oh.

As it turned out, there were so MANY heroes at the We Make Health Fest. So many of them had stories that contained a heroic challenge, a guide, a journey, a transformation, a rescue or solution. This was true from the very first presentation, with Joyce Lee and her son, talking about how they used Youtube to help teach schools how to keep him safe, and how the family worked together to make a large cardboard person to explain their warnings signs. Jane Berliss-Vincent described how an iPad saved a man’s life when he’d given up the will to live. Gary Olthoff made a device that was born out of long visits at hospital bedsides and seeing how nurses struggled with the mattresses. Duane Mackey overcame challenge after challenge in an engrossing story of the process that has culminated in his Open Source Mosquito Trap. The long journey to the stair-climbing wheelchair started young, in early school years, and became a mission. Mike Lee talked about how open teaching and learning resources can change lives in 3rd world countries. Marc Stephens literally transformed his own body through the use quantified self and wearable technology (and more!). Michael Flynn practically juggled the skateboard he was waving around, advocating for new opportunities for physical activities, while the McNaughton-Younger team brought their kids up on stage to help teach challenging concepts of diagnostic tools in surprisingly simple ways. Lia Min told a powerful story of being lost in a grocery story when young, and how sensory challenges can make that a much more confusing and frightening experience, then turning the story and the understanding into a tale for others, through her comic book.

Of course, our keynote speakers were both incredible, and heroes in their own right. Jose Gomez-Marquez explained how medical devices from first world countries fail in 3rd world countries, hidden costs with hidden agendas, and how simple tools and strategies can empower us all. John Costik really reached out and touched the hearts of the audience with his story of his child’s diagnosis with diabetes, how this radically changed their lives, the appearance of experts and guides who helped him along the road to creating the tools that are helping them all feel safer, and being used by so many others.

MakeHealthMontage

It wasn’t just the speakers who were heroes! In the exhibit hall, I was so thrilled to see people from e-NABLE with example Robohands, the open source prosthetic for those who may not be able to afford one. Other 3D printing experts at the event included All Hands Active, Maker Works, and the UM 3D Lab. Brian Zikmund-Fisher demonstrated tools that help people make sense of those confusing and mysterious numbers in research to help people make informed decisions through real understanding. Nanci Nanney lobbied for safe kitchens and restaurants for those with food allergies. Solus created a solution to help people with missing limbs be both more mobile and more comfortable.

We MakeHealth FESTWe MakeHealth FEST

That is just a small, very small, sampling of the heroes who were helping to make health, and who we were privileged to have at our inaugural We #MakeHealth Fest. Over coming weeks we will gradually bring out some of the videos (but it might take a while!). We will try to tell more of the stories, and introduce more of the people. If you were there, think about sharing a blogpost or tweet about what meant the most to you from the We #MakeHealth Fest.

#MakeHealth was AMAZING – Hashtags of the Week (HOTW): (Week of August 18, 2014)

It’s always a delight to have the opportunity to show off a University of Michigan event in these posts. It’s even more of a delight to show off an event of which I was so intimately a part, even though I have to confess I feel like I did very little and it was the community that really drove this magical event! I was just lucky to be among the core team at the front, along with the incredible Joyce Lee and Emily Hirshfeld! There are so very many incredible people who were involved I can’t possible thank them all.

One thing you’ll notice in these tweets is the range of media included — many photos and videos that may or may not display. To get a more engaging sense of the event as displayed in the tweets you may need to click through.

WANT MORE?


Reblogged from THL Blog: http://thlibrary.wordpress.com/2014/08/18/makehealth-was-amazing-hashtags-of-the-week-hotw-week-of-august-18-2014/

Designing Health, Making Health

Reblogged from Health Design By Us.

Health Design By Use

You may have noticed that the We Make Health Fest is sponsored by the Health Design By Us collaborative, of which Joyce Lee is the PI and I am a team member. So what is the connection, at least for us, between health design and making health? A good topic for the final post before the big event. For me, personally, my awareness of the intimate role of design in health began with doorknobs.

Doorknobs and Door Handles

Well, actually it came in the 80s when I was lucky enough to attend a presentation by Don Norman. (Yes, THAT Don Norman.) In the presentation I saw Don described what he called “The Pyschology of Everyday Things (POET).” I would have loved the talk for the name alone, but there was so much more. One of the first things Don did was to put up a whole series of slides of pictures of doorknobs and door handles, then talk about how the door tells us we should open it. He pointed out doors that don’t tell us, or confuse us; doors which seem to say ‘push’ when you need to pull and ‘pull’ when you ought to push. He showed us doors that can only be opened with two hands, with one hand, doors that want you to be righthanded or lefthanded, doors that can’t be opened at all if you are in a wheelchair, and then he showed us doors designed so well that you can open them without hands at all.

When you look at the intersection of the maker movement and healthcare, a great deal of the creativity is focused on solving problems like doorknobs. Problems that began with design that didn’t go as far as it might to include the people actually using whatever it is. With the maker movement, people might say, “Dagnabbit, why didn’t they make it THIS way?!” And then they remake it the way it should have been made in the first place. Or, if they can’t remake it themselves, they look for someone who can. Just last week

Patients think about things like this. A lot! And parents of kids. And the public.

Joyce thinks about things like this, too. (It’s part of what I love about working with her — her insight, caring, enthusiasm, excitement, energy, and her fabulous sense of humor.)

What it really takes, though, is partnerships, collaborations, people talking to other people, people who know that other people are out there interested and working on the same challenges. When Joyce has one of her design thinking workshops with a group of people, she’s encouraging them to think about the topic together, to imagine a better world, to work in teams, to leverage the insights and knowledge of one with the skills and talents of another (and then to switch places, so everyone is using insights and talents!).

Tim Brown says “design thinking” is a combination of what’s desirable, viable, and feasible. Reuven Cohen gives several overviews in Forbes, of which one says it is intelligence gathering, design, and choice, while another says the process stages are: Empathize, Define, Ideate, Prototype, Test. Wikipedia says “design thinking” is a combination of empathy, creativity, and rationality.

I like that so many of those definitions are rooted in empathy. Makers and inventors are excited by interesting problems. (So are researchers, of course.) In healthcare, there is an infinity of interesting problems. But it isn’t just about interesting problems, it’s about caring and need, that’s what starts people working on a problem. Given two equally interesting problems, the one with the greatest need, and the greatest need for heart, is the one that will get the most excitement.

In the maker community, a lot of what helps move things along is also about sharing, working together, sharing ideas and problems, digging around to find a solution. It is invention through flow (rather than by committee). When makers get together to work on a project they also brainstorm and share insights and ideas and resources. Then they go back to the drawing board until they get stuck. The ideas move from person to person, flowing around challenges (lack of resources, lack of skills) much like water flows around rocks in a stream.

Sometimes the flow moves from the person with the idea to someone with the expertise. A lot of the time, it isn’t that simple, and it flows back and forth. Having the idea is itself a kind of expertise. If we want real innovation in healthcare, we need more perspectives, more voices, more sources of imagination and creativity, skillsets that perhaps have not been traditionally valued in healthcare settings. And we have to listen, try to understand what the ideas are, where they are coming from.

With the We Make Health Fest, we’re hoping those different perspectives, voices, views, will meet, and discover each other. And then, maybe, just maybe, some of them will start something new.

“The call to care suggests a possible primary design position. … We might start from the assumption that, as designers, we do not know (yet) how the values of care are being lived and acted upon. We must interpret without (yet) being expert.” Jones PH. Design for care: innovating healthcare experience. Brooklyn, NY: Rosenfeld Media, (c)2013, p.xviii. https://rosenfeldmedia.com/books/design-for-care/

Maybe none of us are experts. Maybe all of us are experts. Maybe the kinds of expertise that will change healthcare the ways that are most needed are kinds of expertise we don’t even know how to recognize yet. But this is how we start finding out.


This was the last post before the big event on Saturday! Come to the We Make Health Fest on August 16th, 2014 in Palmer Commons at the University of Michigan or follow hashtag #makehealth on Twitter! Please follow @MakeHealthUM and @healthbyus on Twitter and please sign up for our mailing list so that you can join and contribute!

What To Do About Bad Guys in Your Twitter Events

How To Block On Twitter

We’re having a big event, as you already know. We’ve used social media a lot in the planning and preparation of the event, and we want social media used during the event. We want to be able to show engagement, a diverse community, a virtual community as well as the face-to-face folk who come in person. We want people to upload pics to Instagram and Flickr, videos to Vine and Youtube; we want people to blog, and to tweet like crazy.

But anyone who has spent much time on Twitter knows what happens when you get a really active hashtag going. Spammers show up. And sometimes trolls. And sometimes people get confused about your hashtag and start sending content they think is relevant (but really they’re confused and it isn’t at ALL appropriate). And some people are just nasty or snarky on purpose. So what do you do?

There was a manager who instructed a social media team exactly what he expected them to do if a hashtag was co-opted like this. His instructions were for EVERYONE TO STOP TALKING. Yeah, really. That was completely the wrong thing to do, but you can’t blame him too much. He wasn’t at all experienced with Twitter, and was trying to work out his own practical interpretation of the popular Internet trope:

DON’T FEED THE TROLLS!!!

Troll

Of course, it’s not that simple.

For starters, just because you don’t like what someone says doesn’t make them a troll. There are many different types of people who can cause trouble in a Twitter stream (and each one requires different handling). Not to mention that telling everyone talking on an active stream to shut up and stop talking is hugely impractical and unworkable. Face it, it’s like a five year old shouting in a large crowd to shut up. No one hears them.

So what CAN you do? Have a plan. Here’s what I’ve seen work.

BEFORE THE EVENT

1) Have a Team
You really need 3-4 people to handle livetweeting an event. You want a team approach so that you are not just one person trying to make yourself heard, but that there are others who have your back in case of trouble, and who will backup what you are saying and retweet it and repeat it and rephrase it to help the important messages get heard. Remember, if you have multiple locations, you want two people in each room, unless the crowd is really small. The bigger the crowd in the room, the more livetweeters you want there from your team. That may mean that you need more than a 4 person team to handle lots of locations

2) Have a Backup Hashtag
When planning your event and choosing a hashtag, have a backup hashtag, just in case things go south. Don’t publicize it in advance, but make sure you have a core team of people tweeting who know what it is. The idea is, “Hey, people, we’re moving the party to a different room.”

3) Strategize
Make sure your team knows how to spot the different types of problems, and what to do in each case. If the point person is in another room, you don’t want the rest of the team waiting for them to come back. So, here is my long time favorite piece on how to identify different types of problems and how to respond. This was written for blogs, but transfers over fairly well to other types of social media.

Air Force Blog Assessment

4) Prepare
Identify the most likely types of problems you expect. Prepare in advance tweets that describe what to do in case of those events. Have a text file with those prepared tweets. Make sure everyone on the team has a copy. Ideally, have a web page prepared with the info. Don’t share the web page until needed, but when it is needed you can share it with everyone on the stream if you want. If not, it is right at the fingertips of everyone on your team, with all the info right in one place, easy to update on the fly.

DURING THE EVENT

1) OPTIONAL: When the event starts, announce general guidelines and assumptions. These might include general behavior guidelines (don’t be preachy); “we assume your tweets are your own and not your company’s”; who is on your team; what the event is about and what the hashtag means; and other things that might matter to your organization.

2) If you aren’t sure if someone is a spammer, and think maybe they are just accidentally being rude, take the conversation out of the hashtag stream. You can use direct messages (DMs) or personal tweets (using the at-sign (@) and their account name). You can nicely ask them to be careful privately without putting them on the defensive. This often works.

3) When it doesn’t work, or when there is nastiness involved (porn, swear words, aggressive marketing), block them, and tell people on the hashtag stream to block spammers. The way Twitter works is that if a hashtag suddenly has a lot of people blocking a lot of other people, things get fixed faster.
– 3a) If a lot of people block the same account, the account tends to be locked down and will disappear.
– 3b) If a lot of blocking activity is happening in a Twitter hashtag stream, the folks at headquarters tend to notice and start monitoring that hashtag for spammers. Suddenly it will all be cleaned up. But it takes a lot of people working together to get this to happen.

4) If none of that seems to be working, break out your backup hashtag and move the party.

HOW TO BLOCK

I was surprised to find out how many people don’t know how to block someone on Twitter. This is really important for shutting down a flood of spammers in a stream. Here’s a little infographic I whipped up to walk people through the process. Feel free to share it.

How To Block On Twitter

OTHER RESOURCES

Social Media Troubleshooting
Pinterest: Rosefirerising: Social Media Troubleshooting: http://www.pinterest.com/rosefirerising/social-media-troubleshooting/

Troubleshooting Portion of: Twitter Hashtags by PF Anderson
Twitter Hashtags (by PF Anderson) http://www.mindmeister.com/270101756/twitter-hashtags-by-pf-anderson

ABOUT #MAKEHEALTH TROLLS

Nature: Don’t Feed the Trolls http://www.nature.com/news/don-t-feed-the-trolls-1.15343

“There’s Magic Everywhere”: The #MakeHealth Exhibitors

Reposted from Health Design By Us

We Make Health Fest (University of Michigan)

The exhibits for the We Make Health Fest are visual, active, hands-on. We are hoping the exhibitors will show you how to do things yourself, discuss tips, tricks, strategies. So, for this blogpost, to try to replicate that sense of physical engagement in a virtual environment, the information about the exhibitors isn’t in a list studded with occasional pictures. Nope, it’s almost all pictures, in a slideshow you can click through yourself, at your own pace. Take a look, browse, think about which ones you want most to visit. And enjoy!

“There’s Magic in the Air”: The #MakeHealth Speakers

Reposted from Health Design By Us.


Make Health meetings, encounters, stuff

I’m so excited! Does it show? All week, every dream I remember having has been about the We Make Health Fest. One of them last night was about writing this blogpost today, and titling it “There’s Magic in the Air.” So, that’s what I’m doing.

Today, I just want to whet your appetites a little by showing you a few videos I found by or about some of our speakers. You will have already seen our video (created by the fantastic and generous Andrew Maynard). Most of these are on different topics, so they won’t actually give away what they’re going to say. Some of them might surprise! (Hint: There is some singing.) It does give you a bit of the flavor of some of the incredible people who’ve agreed to share their creativity and diversity at #MakeHealth. It really is going to be magical, I believe. And who knows? Maybe it will give you ideas for other questions to ask them when you meet them.

GEORGE ALBERCOOK


20131117 IgniteA2 8 talk#9-George Albercook – Elem Students Generate Clean Renewable Electricity https://www.youtube.com/watch?v=G5zDAbTIgqM

JOHN COSTIK


Bring Him Home, John Costik – July 2014 https://www.youtube.com/watch?v=aISVgnxJI-Q

LINDA DIANE FELDT


20110209-IgniteA2-talk 13 – Linda Diane Feldt – Urban Beekeeping https://www.youtube.com/watch?v=LwJSJDlSRM8

KRIS KULLGREN


Helping a child cope with a long hospitalization https://www.youtube.com/watch?v=NvDIdRZNJlg

JOSÉ GOMEZ-MARQUEZ


José Gómez Márquez – Stanford Medicine X 2013 https://www.youtube.com/watch?v=D448ZfVWhFU

ANDREW MAYNARD


Social Media and Science Communication (Media140 presentaton, April 2011, Brisbane AU) https://www.youtube.com/watch?v=uILbBmRFfh4

BRANDON MCNAUGHTON


Brandon McNaughton Entrepreneurship Hour Talk [Compilation] https://www.youtube.com/watch?v=3gQonm1TVo4

LIA MIN


ECG/EEG https://www.youtube.com/watch?v=SjjhKwDy_bE


Direct Link to Full Schedule (Speakers and Exhibitors!): http://bit.ly/MakeHealthFestSpeakers

Please attend the We Make Health Fest and follow @makehealthUM and @healthbyus for updates! Register via http://bit.ly/MakeHealthFestRegistration in order to receive the complimentary lunch!