Category Archives: Health, Healthcare, Support, Science

TEDMED on Patient Engagement – Hashtags of the Week (HOTW): (Week of September 15, 2014)

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TEDMED 2014: Image from presentation, believed to be by Marc Koska.

At Stanford’s Medicine X event, the patient is front and center to the whole experience, an essential partner in helping to innovate in healthcare, as well as in helping to plan the event. In the week following #MedX the Healthcare Leader (#hcldr) Twitter chat also discussed the why and how of engaging patients in healthcare professional conferences with the goal of encouraging fast, relevant innovation in healthcare. Imagine my delight when the same theme cropped up AGAIN at TEDMED. The image opening this blogpost was captured from one of the presentations at TEDMED, I think one by Marc Koska, in which the discussion was about identifying the most important stakeholders for improving (revolutionizing) healthcare, and what relationships are needed among those stakeholder communities. As he kept talking, more and more lines were drawn, connecting the various groups. Ultimately, they are all connected to each other. Thinking of patients, this means patients should be actively engaged in conversations with health care providers, insurance, policy makers, device designers and manufacturers, drug companies, researchers, and so forth.

Part of the point of engaging with actual patients is that you don’t always know what they’ll say. You want to help, and you think you know what will help them, but you can’t truly KNOW until you talk with a lot of patients, to learn about different types of experiences, needs, and perspectives. Sometimes what they say can be quite surprising. Kitra Cahana was a presenter at TEDMED who described her father, Ronnie, spelling out messages with eyeblinks after a major stroke resulting in “locked in syndrome.” What was he saying? Some of the most intelligent, coherent, poetic messages describing the patient experience that I have ever encountered.

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Screen Shot 2014-09-10 at 6.02.37 PM√

So TEDMED asked. They’ve define patient engagement as one of the Great Challenges facing healthcare. “What is the role of the patient? How do we empower patients to make healthier decisions? What is the patient’s role from his or her perspective? What is the role of health people (non-patients) in healthcare?” Here is part of what they asked, and part of what they heard.

@JoelHigh “We have to go deeper with patient to understand their values”

@roseperson “Empower patients to make healthy decisions by advocating for policies and incentives to make healthy=easy”

@LALupusLady “Manage my chronic condition with a TEAM of HCPs, also strive to control flares”


First posted to THL blog: http://thlibrary.wordpress.com/2014/09/16/tedmed-on-patient-engagement-hashtags-of-the-week-hotw-week-of-september-15-2014/

Medicine X – Hashtags of the Week (HOTW): (Week of September 8, 2014)

Stanford Medicine X

Medicine X started late last Thursday, and then ran for the next three days with a SOLIDLY packed program. I tried to follow as much as I could, in between kids, dogs, appliance deliveries, etc. I’m tired. But it was really awesome. There were a bunch of hashtags, but the core one was #MedX. There were, of course, presenters and participants from here, including Joyce Lee and Brian Stork, both of whom gave Grand Rounds on the University of Michigan campus last year. The livestream included what was on the main stage, so I wasn’t able to see their presentations, but there will be video in Youtube eventually. For today, I want to share some highlights from the almost 50,000 tweets over the four days. Among the highlights you’ll see a lot about the future of medical education, patient engagement, and stories in healthcare. To paraphrase the famous Susannah Fox, if these are headlines from the future of healthcare, what are they saying?


First posted at THL Blog: http://thlibrary.wordpress.com/2014/09/08/medicine-x-hashtags-of-the-week-hotw-week-of-september-8-2014/

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/