Category Archives: Science2.0/Health2.0

MedX, and TEDMED, and the Inauguration, Oh, MY!!

MedX, UM Inaugural Symposia, TEDMED

Last week I was privileged to listen in on a press conference for the upcoming TEDMED. Tomorrow is the Symposia for the Inauguration of UM’s new President, Mark S. Schlissel, with Harold Varmus as a guest speaker! Later tomorrow and this weekend, I’ll be watching Stanford’s Medicine X (#MedX) through their Global Access program. Next week the UM Medical School will be hosting a viewing of TEDMED. I feel like I’m swimming in an intellectual biomedical broth!


President Schlissel Inauguration Symposia with Harold Varmus

Inaugural Symposia: Sustaining the Biomedical Research Enterprise and Privacy and Identity in a Hyperconnected Society

HASHTAG: #UMPres14
LIVESTREAM (1): http://umich.edu/watch/
LIVESTREAM (2): http://www.mgoblue.com/collegesportslive/?media=461850

The Inaugural Symposia for President Schissel’s investiture (8:30am ET to 12:00 noon ET) are composed of two very interesting topics and even more interesting collections of speakers. The first part, “Sustaining the Biomedical Research Enterprise,” is the section including the famous Harold Varmus, but also five other notable researchers from on campus, experts in chemistry, genetics/genomics, neuroscience, statistics, and biomedical imaging. (I’m excited that three of the five have expertise related to genomics!)

The focus of the first symposia centers around a recent article from Varmus and colleagues entitled, “Rescuing US biomedical research from its systemic flaws.

The provocative abstract states:

“The long-held but erroneous assumption of never-ending rapid growth in biomedical science has created an unsustainable hypercompetitive system that is discouraging even the most outstanding prospective students from entering our profession—and making it difficult for seasoned investigators to produce their best work. This is a recipe for long-term decline, and the problems cannot be solved with simplistic approaches. Instead, it is time to confront the dangers at hand and rethink some fundamental features of the US biomedical research ecosystem.”

Those three ‘simple’ sentences imply an enormity of challenges which impact both locally and globally. I guarantee it will be fascinating to hear this panel discuss these and brainstorm ways in which the University of Michigan might work towards addressing them here.


Stanford Medicine X

Stanford Medicine X 2014

HASHTAG: #MedX
LIVESTREAM: Available with pre-registration through the MedX Global Access program: http://medicinex.stanford.edu/2014-global-access-program/.

Lucky for me, the Stanford Medicine X event is on the other coast, so our local event will be almost completed when they begin livestreaming at 8AM PT (11AM ET). However, Medicine X conference lasts a solid three days, and includes topics from self-tracking to self-awareness, from entrepreneurship to partnership in design, from compassion to PCORI, from pain to clinical trials to games. It’s intense. A lot of my friends will be there, too many to name, but they include doctors, patients, geeks, and more. MedX is a powerful diverse community, and this is an exciting event.

Schedule: http://medicinex.stanford.edu/2014-schedule/


TEDMED 2014

TEDMED 2014

HASHTAGS: #TEDMED; #TEDMEDlive; #TEDMEDhive; #GreatChallenges.
LIVESTREAMING OPTIONS: http://www.tedmed.com/event/tedmedlive

TEDMED is a little different from the other two events in that it isn’t sponsored through higher education and the livestream isn’t usually free. For folk here in Ann Arbor, there is a way to watch it on campus. What you’ll see if you come includes very little that is expected. Even when someone has a job description that might sound like regular healthcare folk, what they are talking about will probably be a surprise. Beyond the idea of doctor, patient, nurse or neuroscientist, you will also hear comedians, musicians, athletes, bioethicists, military, philosophers, inventors, and more. But what else would you expect, when the theme of the event is “Unlocking Imagination”?

The TEDMED event is a little more complicated than in prior years because they are having presenters and events on both coasts — in Washington DC and in San Francisco. Some parts will overlap. Other parts won’t. You can check out the schedules for both coasts here.

Washington DC Stage Schedule (pdf)

San Francisco CA Stage Schedule (pdf)

To watch locally, details are given below.

Watch the Live Stream of TEDMED Conference, September 10-12

The Medical School will host a live stream from the TEDMED conference, which takes place September 10-12 in Washington DC and San Francisco. The focus of this year’s program is “Unlocking Imagination in Service of Health and Medicine.” Presenters include some of the most respected and undiscovered names in science, journalism, education, business, and technology. Click here to see the conference schedule. Viewing times and locations for watching the live streams are:

Wednesday, September 10: 8am-5pm: University Hospital South (Old Mott) 8th floor lounge
Thursday, September 11: 8am-12pm, 1pm-5pm: University Hospital South (Old Mott) 8th floor lounge
Friday, September 12: 8am-11:30am: University Hospital South (Old Mott) 8409 Conference Room
Friday, September 12: 11:30am-5pm: University Hospital South (Old Mott) 8419 IDTT Collaboration Space

Infographic of the Week: HHS Infographics Collection!

HHS Infographics on Flickr
Flickr: Group: HHS Infographics: https://www.flickr.com/groups/hhsinfographics/

I just discovered a Flickr group that collects infographics from the US Department of Health and Human Services. WOW. Talk about a great resource! There are many infographics in the collection, and also marketing images for specific health challenges or initiatives.

HHS Infographics on Flickr

This isn’t all they have, though! You can many of these in sets or albums from the HHSgov Flickr Stream.

Flickr: HHS: Sets: Health Care Infographics: https://www.flickr.com/photos/hhsgov/sets/72157633968047018/

Flickr: HHS: Sets: HHS Infographics: https://www.flickr.com/photos/hhsgov/sets/72157632180365890/

Now, it is completely wonderful to have a one stop shop to go hunt health infographics from a reliable source and of known high quality. Extremely useful! But this is even better than that. Because these are in a Flickr Group, there are many other things you can do.

If you have a Flickr account, you can request to join to track the images that appear in the group, or you can use the RSS feed from the group in your feed reader.

You could set up a computer display in a public area, and start the “slideshow” view from the group as a way to engage the public around quality health information.

Because these are licensed as “United States government work,” you can download these, re-use them, post them yourself, put them on your website, edit and modify them. As they say:

Anyone may, without restriction under U.S. copyright laws:
* reproduce the work in print or digital form;
* create derivative works;
* perform the work publicly;
* display the work;
* distribute copies or digitally transfer the work to the public by sale or other transfer of ownership, or by rental, lease, or lending.

Niiiiiice.

However, because these are in Flickr, the absolute easiest way to share them is to just embed them on your webpage or site, or share the link wherever you wish. Here’s an example.

Recently, I’ve been seeing many conversations on social media, on Twitter, Facebook, and in blogs, about issues with patients access to their electronic health record and problems with the accuracy of the information in their record. Right now, this is again a timely issue. The HHS has a series of four short infographics on exactly this topic. I can choose one or any or all and, with a Flickr account, grab the embed code to put them in this blogpost without having to download or upload or rename or identify or worry about the accessibility of the code. Here’s what it looks like.

Know Your HIPAA Rights #1Know Your HIPAA Rights #2
Know Your HIPAA Rights #3Know Your HIPAA Rights #4

If someone clicks on any of the four images above, it will take them to the original image, in a larger size. The source is right there, and I didn’t have to do the work. So very helpful. I love this resource. So glad I found them!

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