Patients on the Right TEDMED Questions – Hashtags of the Week (HOTW): (Week of September 22, 2014)

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 healthy people (non-patients) in healthcare?

TEDMED Great Challenges: Role of the Patient (photo by Dr. Nick Dawson)

Last week, we talked about the trend toward patient engagement in events that may have previously been focused almost exclusively on medical professionals. A spin off from that rich conversation was when the patient advocates began to question what are the right questions to be asking about patient engagement. Even more impressive, TEDMED was sometimes asking if they have the right questions, so this is a conversation valued from several perspectives.

What I’m observing, however, is a sense of not being included on the part of patients, and a strong need for greater engagement by patients in the process by which TEDMED develops their questions and Great Challenges. Just in case there are those who aren’t aware of this, TEDMED has an online community space where these matters are discussed. Anyone can create an account and ID for participating in this conversation. Know someone you think should be participating? Ask they if they’ve joined, or better yet, invite them.

TEDMED: Great Challenges: http://www.tedmed.com/greatchallenges

TEDMED: Account Creation: https://www.tedmed.com/accounts/login?redirectto=%2Fgreatchallenges&ref=account-login

Here are some of the tweets from that tangential conversation, beginning with the one that started it all.

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

Screen Shot 2014-09-10 at 6.24.43 PM√
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”

JAMA Article: The Importance of Engaging Medical Librarians in Reviews

The informationists at the Taubman Health Sciences Library are ready and willing to collaborate with clinical faculty and staff across the health sciences schools and the health system on research and literature searches.

This article (Engaging Medical Librarians to Improve the Quality of Review Articles) from the Journal of American Medical Association (JAMA), out today, speaks directly to the value of collaborating with medical librarians and informationists.  A two page read that could provide an exponential return on investment.

Medical librarians play a central role in assisting clinicians access medical literature needed to provide patient care.4 They also can play an important role in developing high-quality narrative and systematic reviews, constructing search strategies, managing references, reviewing references for inclusion, documenting the search methodology, and contributing to the drafting of the final manuscript. Having a medical librarian closely involved ensures that the review will be thorough and its methodology reproducible. Medical librarians bring expertise to the review process based on their understanding of the medical literature, search methods, and re- view guidelines and standards. Their neutrality and expertise can help minimize bias in the review process, leading to more robust and un- biased review articles. – Excerpt from Rethlefsen, Murad, & Livingston (2014)

Rethlefsen ML, Murad M, Livingston EH. Engaging Medical Librarians to Improve the Quality of Review Articles. JAMA.2014;312(10):999-1000. doi:10.1001/jama.2014.9263.

Collaboration (2013) designed by Krisada from the thenounproject.com (CC BY 3.0)

Collaboration designed by Krisada from the thenounproject.com

 

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?

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

Conferences on Twitter (AIDS & Cardiology) – Hashtags of the Week (HOTW): (Week of September 1, 2014)

Mid-Event Twitter Metrics for #ESCongress via Symplur
#ESCongress Twitter Metrics: http://www.symplur.com/healthcare-hashtags/esccongress/

Even people who don’t use Twitter are usually aware of the Twitter backchannel at conferences. There are some big ones going on right now.

AMEE 2014 (medical education): #AMEE2014
APAC Forum (“social media as a transformative force in healthcare”): #SoMeTransform and #APACForum
The BMJ Awards: #thebmjawards
ESC Congress 2014 (European Society of Cardiology): #esccongress

There are almost always various healthcare conferences going on. Here is a small selection of healthcare conference hashtags coming up later this week.

Breast Cancer Symposium: #BCS14
Kaiser Permanente Irving Rasgon Family Medicine Symposium, 40th Annual: #KPFamMed
Rural and Remote Health Scientific Symposium, 4th: #ruralhealthsymp
Society for Imaging Informatics in Medicine (SIIM) Regional Meeting: #SIIMboston
Stanford Medicine X 2014: #MedX
Trauma Education: The Next Generation 2014: #TETNG14
World Congress on Cancers of the Skin: #WCCS2014

How do I find these? Partly from my Twitter stream, partly from searching, but mostly from the Symplur list.

Symplur: Healthcare Hashtag Project: Conferences: http://www.symplur.com/healthcare-hashtags/conferences/

What was probably the largest Twitter presence from a healthcare conference happened earlier this summer with the International AIDS Conference, #AIDS2014, which had almost 15,000 tweets the first day. Part of what caused the spike was the loss of so many AIDS researchers in the MH17 crash in the Ukraine as presenters tried to get to the conference. This isn’t just an idea I had, but something you can see in the tweets and their analysis. Symplur doesn’t simply serve as a tool to discover hashtags and tweets, but also provides metrics and comparisons. Here are some Twitter metrics from the AIDS2014 hashtag (you may need to click through to see the images).

Something that also happens on Twitter with conference hashtags are people planning to attend events, making arrangements to meet, promoting a presentation they hope will attract an audience, building up awareness and marketing. Sometimes you also get comments like this one about what NOT to do for using social media or the web for your event.

Oops. A BIG oops! Symplur has guidelines for Twitter hashtags that would make life difficult if the Big Data Science in Medicine folk try to use the URL as their hashtag, since it would probably not be allowed to be registered for archiving. It would probably also attract a lot of “unintended” and off-topic tweets.

The big healthcare conference on Twitter right now is the European Society of Cardiology, still going on today, with over 21,000 tweets and over 93 million impressions (so far). Here are just a few highlights from ESCCongress.

Taubman Health Sciences Library History–Our Beginnings

Leading up to the re-opening of the renovated Taubman Health Sciences Library building in summer 2015, we are planning a series of blog posts highlighting aspects of the library’s history. This first post focuses on the first 50 years of the library, from its mid-nineteenth century beginnings to the turn of the 20th century.

 

University of Michigan Old Medical Building

University of Michigan Old Medical Building. Built in 1850 and pictured during the 1860s. Image source: Bentley Historical Library, University of Michigan, BL000001.

 Medical School

The history of the Taubman Health Sciences Library begins with the establishment of the medical school and the early years of the University Library. The Medical Department opened in 1850, in a 3-story building on a dirt road at the edge of campus, now the east side of the Diag. The school offered a 2-year program, with five salaried professors hired to lecture and give clinical demonstrations.

In 1850, about 75 students were enrolled in the university as a whole. Medical students likely did not have a college education, but did have to provide evidence of a good moral character and enough Greek and Latin knowledge to read medical texts, as well as arrange a 3-year apprenticeship with a practicing and “respectable” doctor, according to Horace Davenport’s history of the medical school’s first 50 years.


Continue reading

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.

To continue reading more information on this, please see the original post at the ETechLib blog: http://etechlib.wordpress.com/2014/08/26/concerns-clarification-on-the-fda-guidelines-for-social-media-fdasm/

New Hashtag, Nursing Ethics – Hashtags of the Week (HOTW): (Week of August 25, 2014)

SL09: SLUM: Nursing Class

There is never a shortage of great healthcare hashtags, chats, events, etcetera on Twitter, and new ones appear all the time. Nursing Ethics is an emerging hashtag which is a regular Twitter chat, but gained special attention over the past week with the Nursing Ethics Summit. There is a very active and engaged nursing community on Twitter, much of it centered around #NurseUp. The Twitter nursing community is of value for talking about professional concerns and sharing professional articles and information, problems and solutions, with a great deal of potential for nursing education. Here are just a few highlights from this newest addition to the nursing hashtags.

#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.

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