Tag Archives: health

#MakeHealth RETURNS!

Make Health Fest 2015

We are gearing up for this year’s repeat of the fantastic Make Health event, a maker event themed around healthcare.

Make Health Fest: http://makehealth.us/
(Pssst! Check out #MakeHealth on Twitter)

This year (THIS WEEKEND!!), MakeHealth is a two-day event, with presentations split onto two different days, and booths and demos on Sunday. Check the schedule carefully to not miss something you want to see.

FESTIVAL: Make Health Fest: 11 am – 6 pm, Sunday, October 25th, 2015
SYMPOSIUM: The Nightscout Project, Patient-Driven Innovation, & the Maker Movement: 9:30 am – 12 pm, Monday, October 26th, 2015

This year we have been recruiting some awesome campus and community partners (and the list is still growing!). We are also seeking volunteers of all sorts (and you can volunteer to help at the website). We ESPECIALLY need people to do social media stuff, write up the event wherever you post, livetweet presentations and displays, take pics, help us make the event come alive for those who can’t get here. And if anyone is able and willing to livestream or Periscope, that is another thing we’d love to do (and get requests for) but which hasn’t happened yet. People who volunteer officially get cool swag, so it’s worth signing up as well as just doing it!

If you ARE a presenter, feel free to recruit one of your friends to videotape you and put it up online, but being sensitive to those in the audience who may be less thrilled about being on camera.

We are really excited about this year’s highlights and keynotes:

Susannah Fox was the health lead at the Pew Internet and American Life Project, and is now Chief Technology Officer of the U.S. Department of Health and Human Services (HHS). Whoa. Susannah’s ideas of what qualifies as technology tend toward the broad side. That broad definition makes it easier for her to be absolutely as excited about what makers and real people are doing as much so (if not more) than what professional geeks are doing.

We also have Jose Gomez-Marquez, Director, MIT Little Devices Lab, and Anna Young of Maker Nurse. More information forthcoming about presentations on the patient-led movement to overhaul life with diabetes (a.k.a. the NightScout Project), which you may have noticed under the hashtags #WeAreNotWaiting, #CGMinTheCloud, #DIYPS, #NightScout, #OpenAPS, and probably more.

It promises to be a fantastic event, and we would love your help and participation. If you want to take a look at just how fantastic it was last year, you can do that here.

We #MakeHealth Fest 2014: http://makehealth.us/2014

Since Katrina, Part One: #SinceKatrina, #Katrina10, #Katrina10Years

Katrina Memorial

It’s been 10 years since Hurricane Katrina. Hurricane Katrina changed my life, in many ways. I want to talk about health information challenges then and now, how the information landscape has changed, but that will come in Part Two. For today’s post, I want to honor many of the other voices and conversations around this anniversary. The hashtags collecting these are:


People are telling the stories of what happened then, remembering, grieving, sharing anger and hurt that has barely faded. Others are analyzing again what went wrong. A few are celebrating survival and growth. Many are looking to the lessons learned and what must happen to prevent this happening again. There are many worthy stories, opinions, ideas, and ideals here. I’ve selected just a few.







Hashtags of the World (HOTW): #WhatIfResearchKit / What If Research Kit … ?

Apple ResearchKit
Apple ResearchKit: https://www.apple.com/researchkit/
ResearchKit for Developers: https://developer.apple.com/researchkit/

Last week, while I was deep in the throes of a family crisis, Apple announced “ResearchKit.” I noticed it, but obviously had no time to do anything with it. I’m looking forward to exploring that. I mean, really, it’s getting a ton of press!

9to5Mac: ResearchKit did in 24 hours what would normally take 50 medical centers a year – Stanford University

Bloomberg Business: Thousands Have Already Signed Up for Apple’s ResearchKit

CNBC: Apple’s ResearchKit: Gamechanger for digital health care?

Forbes: Apple’s Open-Source ‘ResearchKit’ And The Future Of Medical Research

MacWorld: First medical apps built with Apple’s ResearchKit won’t share data for commercial gain

MacWorld: Stanford’s ResearchKit app gained more users in 24 hours than most medical studies find in a year

TechCrunch: ResearchKit An “Enormous Opportunity” For Science, Says Breast Cancer Charity

TedBlog: mPowering the Apple ResearchKit: How Max Little put a Parkinson’s app on the iPhone

TheVerge: Apple’s new ResearchKit: ‘Ethics quagmire’ or medical research aid?

TheVerge: Apple’s new ResearchKit lets iPhone users participate in clinical trials; It could help researchers recruit from more diverse populations

Wired: Apple’s ResearchKit is a New Way to do Medical Research

Here is what Apple and it’s current group of partners are envisioning for how ResearchKit might be used. It sounds pretty inspiring already, with a nod to some of the complicated ethical and privacy issues poised to emerge.

ResearchKit – how iPhone is transforming medical research https://www.youtube.com/watch?v=VyY2qPb6c0c

In the meantime, several of my friends and colleagues on Twitter have begun discussion their visions for what could be done with ResearchKit. This group includes patients as well as researchers, and this, I suspect is the demographic, the community creating collaborations where the most profound and productive changes will be found. Here’s what they are saying, so far. Why don’t you join in?

Why stop there? What other possibilities could come from widespread adoption and use of ResearchKit?

#WhatIfResearchKit helped monitor the progression of Alzheimer’s Disease. Like a more official version of what was seen in ‘Still Alice’?

#WhatIfResearchKit helped improve treatment and intervention for depression through passive activity tracking?

#WhatIfResearchKit apps were developed in collaboration with the patient community? If these apps aren’t used, there’s no data to analyze.

What if Apple released a tool so anyone could make a #ResearchKit connected app. True citizen science. #WhatIfResearchKit

What if a community of translator helped translate #ResearchKit studies and consent information into other languages. #WhatIfResearchKit

#WhatIfResearchKit was rolled into the #PrecisionMedicine initiative and the NIH took a more open-source mentality to data collection.

That #WhatIfResearchKit already exists recalls @rufuspollock: “The best thing to do with your #data will be thought of by someone else.”

#WhatIfResearchKit tracked child development so that children with autism could be diagnosed quicker and provided with skills

Catching up on two rich threads: #bcsm + #WhatifResearchKit Who says we can’t cry and laugh and hope and rage all at the same time?

#WhatIfResearchKit was a cross-platform non-profit initiative partnering together device manufacturers to better healthcare? #DigitalHealth

“The key to understanding #health & disease is research & data.” Check out @AppIeOfflciaI’s #WhatIfResearchKit: http://apple.co/1FFSLR8

#WhatIfResearchKit JMIR will built a Healthbook app which randomizes participants to #mhealth apps #megatrial with 700 million participants

Healthbook http://www.healthbook.com/ will use #researchkit and also support n-of-1 trials to evaluate #mhealth apps #WhatIfResearchKit

What if all the people who are “healthy” (for now) could contribute their data as controls? #WhatIfResearchKit

#WhatIfResearchKit had an opt-in for every human, to proxy any slice of my data to #opensource science. +audit-trail

#WhatIfResearchKit was my life baseline, always collecting data when I’m healthy, so when I’m sick, the record is computable + comparable.

#WhatIfResearchKit was available on android platforms to ensure more socioeconomic, racial and ethnic diversity of participants

#WhatIfResearchKit flipped the paradigm community based studies studying access to care, how tertiary care centers impact POC communities

What if Apple made a dashboard so that we could all see enrollment numbers for #ResearchKit apps (in real time)? #WhatIfResearchKit

Reporters: If you are writing about #ResearchKit check out the ideas being shared here: #WhatIfResearchKit (and interview those innovators)

#WhatIfResearchKit – A story in 140 character bursts of hope https://storify.com/iamspartacus/whatifresearchkit … via @iam_spartacus

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!

“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.


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


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


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


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


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


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


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


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!

Learn about Making, 2: Videos

Reblogged from Health Design By Us

We #makehealth Fest- August 16th! https://www.youtube.com/watch?v=QxWMpCMInNA

Here’s more on learning about making, today with videos! I started writing this post talking about how to find videos about making and #makehealth to learn more about them, and then Andrew Maynard was inspired to make a RiskBites-style video for us!!! Can you tell I’m excited? I refrained from more than three exclamation points. So, please, watch our video first (it’s short), but the rest of the post is about videos by other people about making.


Maker, the Movie (Screenshot)
Maker, the Movie: http://makerthemovie.com

Last week I talked about the summer camp and the online course. If you dug into those you would have probably found their videos! There are a lot more, however, and there is even a MOVIE about the maker movement, and we are going to show it over the lunch hour at our event. It is going to be great!

Below you will find a sampling of videos illustrating some of the range of what’s available on the topic of making. Included are both general making and health making, finding good Youtube Channels, persons, “topics”, and project examples. In each category, I’ll try to highlight at least one and then give links to more in each category.


Maker learning events NOW

First a few videos from the groups highlighted last week.

The Google Science Fair just had a Google Hangout with last year’s winner, Eric Chen. Eric’s project was: “Computer-aided Discovery of Novel Influenza Endonuclease Inhibitors to Combat Flu Pandemic.”

Come Hangout On Air with the 2013 Grand Prize Winner of Google Science Fair! https://www.youtube.com/watch?v=E5CezSabRTA

The MOOC course on Tinkering? They not only had a brief video to introduce the idea of the class, with more videos and tutorials in the class, but then had Hangouts during the source, all of which are archived online.

Fundamentals of Tinkering (Screenshot)
Fundamentals of Tinkering http://vimeo.com/92558395

Tinkering Studio (Channel): https://www.youtube.com/channel/UCtx1xfSh01cJ8WYsFeKt7RQ
Tinkering Fundamentals: Week One Hangout https://www.youtube.com/watch?v=Iad280GF_rk
Tinkering Fundamentals Integrating Making Activities into Your STEM Classroom https://www.youtube.com/watch?v=zvDd1rwxRJU

Make Magazine (Screenshot)MakerFaire Videos (Screenshot)

The Maker Camp people also have their own video channel, with interviews and archived Hangouts. Not only do they have the Maker Camp videos, but also the Maker Faire videos, AND individual projects from Make Magazine. I was surprised to find that they ALSO have some video from these various maker sources included in the channel for their sister publication CraftZine.

CraftZine (Screenshot)

Maker Camp: Blasting Off with Buzz Aldrin and NASA https://www.youtube.com/watch?v=7CDwz-bZtBc


Adam Savage's TESTED (Screenshot)Household Hacker (Screenshot)

Adam Savage: Tested: https://www.youtube.com/user/testedcom
Google Science Fair: https://www.youtube.com/user/GoogleScienceFair
Household Hacker: https://www.youtube.com/user/HouseholdHacker
Maker Magazine: https://www.youtube.com/user/makemagazine
Maker Faire: https://www.youtube.com/user/MakerFaireVideo
Tinkering Studio: https://www.youtube.com/channel/UCtx1xfSh01cJ8WYsFeKt7RQ


Hacking Health (Screenshot)NIH 3D Print Exchange (Screenshot)

Some of these channels are people talking about things they’ve learned how to do. Other are from organizations, even ones like NIH or the NHS (UK). Some of them are kind of conservative, while others are edgy, or even risky. (For example, I was a little floored when I saw a video on how to remove magnetized sensors from under your skin.) One of my favorites is the new service from NIH for people sharing tips and tricks with 3D printing. Some of these people have gotten so good at what they are doing they have become consultants and are selling their services for training, so you might see advertisements. Despite that, these are just a small selection of the various types of people and organizations sharing information about tools and techniques for improving your own health (beyond diet and exercise).

21 Convention: https://www.youtube.com/channel/UCuErSr7xeR763BzTJL7yJ7A
Bulletproof Executive: https://www.youtube.com/channel/UC1Aq3T1GmKcObLqo1YIU_Ww
DIYbioNYC: https://www.youtube.com/user/DIYbioNYC
FAB Research: https://www.youtube.com/user/FABResearch
GrindHouseWetWares: https://www.youtube.com/user/grindhousewetwares
Hack Cancer: https://www.youtube.com/channel/UC54gHiExrTiTPQuvb7MuRYA
Hack Health Day 2012: https://www.youtube.com/user/healthhackday2012
Maarten den Braber: https://www.youtube.com/user/mdbraber
Manuel Corpas: https://www.youtube.com/user/manuelcorpas2
microBEnet: https://www.youtube.com/user/microBEnet
NIH 3D Print Exchange: https://www.youtube.com/channel/UCNmPN3UVxRrKbgsxSIKFxzQ
NHS: Open Data Platform Hack: https://www.youtube.com/user/ODPhack
Official Simpleology: https://www.youtube.com/user/OfficialSimpleology
Personal Genomes Org: https://www.youtube.com/user/PersonalGenomesOrg
Personal Genomics Institute: https://www.youtube.com/user/pgiinfo
Quantified Self & Biohacking Finland: https://www.youtube.com/channel/UCbwaE6GhLCmN3CiNgaXjfTw
Quantified Self Labs: https://www.youtube.com/user/quantifiedselflabs
Seth Bordenstein: https://www.youtube.com/user/sbordenstein
Yohanan Winogradsky: https://www.youtube.com/user/microbiome


Ellen Jorgensen: Biohacking — you can do it, too: https://www.youtube.com/watch?v=AWEpeW7Ojzs

You probably already know that you can subscribe on Youtube to follow the videos of a particular user, but did you know that you can also subscribe to follow specific topics? Here are just a few I’ve selected to highlight topics related to making health, as well as tools and techniques often used by people interested in taking charge of their own health.

Topic: 23andMe: https://www.youtube.com/channel/UCOWtXjptyLopXxfhZDS5uNQ
Topic: Activity Tracker: https://www.youtube.com/channel/UCPHw-0Y6vrHNhWZTrYQFnCg
Topic: Biohacking: https://www.youtube.com/channel/UCKShU3O_v1o07Gy30tvdiAg
Topic: Digital Health: https://www.youtube.com/channel/UChAXVgotFdbmPw55UKRTUrw
Topic: e-Patient: https://www.youtube.com/channel/UCxq1ua3HKlDlaXyE7pWTwaQ
Topic: Gut flora: https://www.youtube.com/channel/UCeEHjg6NKgv_LWqw1StKuxQ
Topic: Human Microbiome: https://www.youtube.com/channel/UCORCj6yiQvXqAqy8h5kD8UA
Topic: Life logging: https://www.youtube.com/channel/UCw-8rJiO84hyglLzs0ioLlw
Topic: Microbiome: https://www.youtube.com/channel/UCFjMxsa7J9h_X0_tt5kkCBQ
Topic: Patients Like Me: https://www.youtube.com/channel/UCn-TkpPlBPaQfStmYc7c3_A
Topic: Personal genomics: https://www.youtube.com/channel/UCmpW3xCzFPTz5CCLgQdrPbw
Topic: Personalized medicine: https://www.youtube.com/channel/UCkivXFgjqMrNi38P9LPH1lw
Topic: Quantified Self: https://www.youtube.com/channel/UCUwK10M7andc8qcjk1171ug
Topic: Shared decision making: https://www.youtube.com/channel/UCOLP8MoklY9nkNLLgkEcuwg
Topic: Synthetic Biology: https://www.youtube.com/channel/UCwYKhJVNj4D6tQjArn-Odtg
Topic: Wearable Computer: https://www.youtube.com/channel/UC1iTALBPyYMh6HcetVD8Txw
Topic: Wearable Technology: https://www.youtube.com/channel/UCihxzUkujQoQzuM_aA4peJA


Beautifully Disgusting E Coli

Here are just a few randomly selected examples of individual videos on projects. If you come up with an idea for something you want to try, maybe someone else has already done it, and you don’t have to completely make it from scratch! The search box may be your friend, you never know until you look.

Adam Savage’s One Day Builds: Custom Multi-Tool Belt Holster: https://www.youtube.com/watch?v=Et-JvYrQ84o
Bulletproof Executive: Podcast #140 – Hacking Memory and Focus with Mattias Ribbing – Bulletproof Executive Radio: https://www.youtube.com/watch?v=SHuuwsUg2m0&list=UU1Aq3T1GmKcObLqo1YIU_Ww
HouseholdHacker: Beautifully Disgusting E Coli: https://www.youtube.com/watch?v=X-Q8TIHbipQ
Outfitting the Kitchen – Still Untitled: The Adam Savage Project – 7/8/2014: https://www.youtube.com/watch?v=-U-whV93wBc&list=UUiDJtJKMICpb9B1qf7qjEOA
Personal Cooling Unit: https://www.youtube.com/watch?v=BeLa72oSf3c
Pollution Shirt Senses Foul Air: https://www.youtube.com/watch?v=UHEww6eX4wc
Weekend Projects – Non-Contact Voltage Detector: https://www.youtube.com/watch?v=tTxIR_jAEL4
Weekend Projects – “Raspberry Eye” Remote Servo Cam: https://www.youtube.com/watch?v=tSJ-sWEJ5EU

Your Health – A Lot of It Is About Asking Questions. The Right Questions.

Pic of the day - What makes it happen smart?

During Sunday’s frantically paced #HCSM Twitter chat, one of the topics that came up was the problem of getting help and learning when you have a new diagnosis. That is when your brain usually goes into some sort of frozen state, and you forget important things, like that you already knew some of this, or how to spell the words, or to ask how to spell the name of the thing you have. You know, things you would think of if you weren’t sitting there stunned.

I had two recommendations. 1) Ask a librarian for help, ASAP, especially a medical librarian. 2) Look for suggestions or lists of questions you should be asking, just to make sure you don’t miss something important. Here are some resources and tips for both.


Ask a librarian

A lot of people replied that it isn’t as easy as I think to ask a librarian. Not because they were embarrassed about asking, but because they couldn’t find a librarian. Oh. Really?!? Oh, wow.

So first thing I did was post a couple of links on where and how to find medical librarians. Now, of course, you can always ask a healthcare professional, it is just I assume that you’ve already tried that, or that your appointment was too short, or that you didn’t think of the right questions then. Libraries are great for just dropping in and asking for help.

Find a Librarian: National Network of Libraries of Medicine Find a Librarian: Medical Library Association

National Network of Libraries of Medicine: Members: http://nnlm.gov/members/

Medical Library Association: For Health Consumers: http://mlanet.org/resources/consumr_index.html#2

Find a Librarian: MedlinePlus Find a Librarian: healthfinder

MedlinePlus: Find a Library: http://www.nlm.nih.gov/medlineplus/libraries.html

healthfinder: Find Services Near You: http://healthfinder.gov/FindServices/

Find a Librarian: LoC / NLS Find a Librarian: Ed.gov

Library of Congress: NLS Reference Directories: Library Resources for the Blind and Physically Handicapped 2009: http://www.loc.gov/nls/reference/directories/resources.html

Ed.gov: Library Search: http://nces.ed.gov/surveys/libraries/librarysearch/

Find a Librarian: WorldCat Find a Librarian: Internet Public Library

Worldcat: Libraries: http://www.worldcat.org/libraries

Internet Public Library: Library Locator: http://www.ipl.org/div/liblocator/

The next concern was along the lines of “What about finding a librarian at 3:00AM when I can’t sleep because I’m so frantically worried about everything that’s happening right now? Librarians are hard to find at 3AM!”

Believe it or not, there is a solution for this, too.

Internet Public Library: Ask Us: http://www.ipl.org/div/askus/
“This service runs 24 hours/day, 7 days/week during most of the year.”

Yes, really.

Ask a Librarian: Internet Public Library


Ten questions to ask your doctor

When you are first diagnosed, there can be this sense of urgency, a need to find out everything you need to know, except … where do you start? There is so much to learn! What do you need to know first? What questions should you be asking?

For most diagnoses, someone has written up a list of questions for exactly this. The problem is first, thinking to ask what questions to ask, and second, finding these lists of questions. It is kind of like being granted three wishes in a fairy tale, with the rule “No wishing for more wishes!” Far too often, people find out later questions they wish they had asked at the beginning.

There are a few search strategies I’ve found helpful over the years for finding these. You can ask a librarian for help, but you can also do your own searches. For each of these examples, try adding in the name of your diagnosis to the search strategy given below. Try changing the word “doctor” to the type of health professional you are seeing — nurse, or therapist might be other choices.

See what lists of questions you find. Then write down the questions you like, and make a list. Order the questions by what’s most important, because sometimes there won’t be time for all of the questions.

“ask * doctor”

“question to ask” doctor

“ask * questions” doctor

“asking * questions” doctor

(“frequently asked questions” OR FAQs OR FAQ)

AHRQ: Questions are the Answer

Remember these tips from the Agency for Healthcare Research and Quality — Questions ARE the Answer.

AHRQ: Questions are the Answer: http://www.ahrq.gov/legacy/questions/index.html

They have ten standard questions, and a tool to build and print your own custom question list. Here are the ten basic ones.

1. What is the test for?
2. How many times have you done this procedure?
3. When will I get the results?
4. Why do I need this treatment?
5. Are there any alternatives?
6. What are the possible complications?
7. Which hospital is best for my needs?
8. How do you spell the name of that drug?
9. Are there any side effects?
10. Will this medicine interact with medicines that I’m already taking?

Hashtags of the Week (HOTW): Naming and Shaming (Week of March 25, 2013)

First posted at the THL Blog by Chris Bulin (@Arduane): http://thlibrary.wordpress.com/2013/03/29/hashtags-of-the-week-hotw-naming-and-shaming-week-of-march-25-2013/

I was amazed (and a little horrified) by the number of stories having to do with ethics in science over the last week. As a student at the School of Information, we heard quite a bit about the incident of public shaming and resulting fallout from PyCon (a conference about the Python programming language). There was a lot of scuttlebutt and some serious discussion about the role of sexism in STEM. On the heels of this came the “revelation” that the I F*cking Love Science (IFLS) blog was run by *gasp* a woman! Twitter was absolutely flooded with posts about #science, #ethics and #sexism.

Around the same time these issues were being discussed, the European Molecular Biology Laboratory at Heidelberg published a paper which released the full genomic sequencing of a strain of commonly used HeLa cells, as noted by Forbes. This brought up questions about personal genomics and privacy. You can follow this conversation on the following hashtags #HeLa, #privacy, #bioethics, #genomics.

And, to add a strange twist to our ethics discussions this week, Australian scientists have been able to resurrect an extinct frog as part of the Lazarus Project, while researchers in the US attempt to bring back the carrier pigeon. Both of these #deextinction initiatives have gotten Twitter talking about woolly mammoths and Jurassic Park.

Human Microbiome 101

I’ve been tracking the Human Microbiome Project for a few years now. I was going to blog about it, and then the New York Times published articles about it, and I assumed that meant I didn’t need to say anything. Last week I was talking with a few friends about the human microbiome, and absolutely blasted their minds into outer space. Not only had they not heard about it, the very idea was hard for them to wrap their minds around. So, here is a very brief intro, grabbing wonderful pieces from other folk. Brief take-aways.

1. Most of our body, say roughly 99% (by cell count), is comprised of critters that don’t have any human DNA. Surprise!
2. The groups of critters, a.k.a. microbes, that make up most of our bodies are surprisingly different from person to person.
3. The whole idea of antibiotics might turn out to be one of those really really bad social experiments, in that while killing the “bad” microbes, the antibiotics are also killing our good ones, the ones that we need to live and be healthy.
4. The research into what microbes make up part of different people, and how this impacts on physical and mental health, is provocative, potentially quite valuable, and extremely complicated.
5. This area of research brings up yet more challenges to the ideas of personal privacy and transparency in healthcare.

Brief video explanation (about 3 minutes).

Human Microbiome Project: Analyzing microbes that play a role in health and disease http://www.youtube.com/watch?v=axB_8O4WHYg

Excellent longer video introduction (about ten minutes).

Human Microbiome Research: An Introduction http://www.youtube.com/watch?v=DNZ2e8O7svs

Slides to go into a little more depth and context.

Jonathan Eisen: Human Microbiome 101, Future of Genomic Medicine Meeting #FOGM13, http://www.slideshare.net/phylogenomics/jonathan-eisen-talk-at-fogm13


Broad Institute: http://www.broadinstitute.org/scientific-community/science/projects/microbiome-projects/hmp/human-microbiome-project

J. Craig Venter Institute: http://hmp.jcvi.org/

NIH Common Fund Human Microbiome Project (HMP) http://commonfund.nih.gov/hmp/

NIH Human Microbiome Project: http://www.hmpdacc.org/


Peter J. Turnbaugh, Ruth E. Ley, Micah Hamady, Claire M. Fraser-Liggett, Rob Knight, Jeffrey I. Gordon. The Human Microbiome Project. Nature 449:18 October 2007

“Before the Human Genome Project was completed, some researchers predicted that ~100,000 genes would be found. So, many were surprised and perhaps humbled by the announcement that the human genome contains only ~20,000 protein-coding genes, not much different from the fruitfly genome. However, if the view of what constitutes a human is extended, then it is clear that 100,000 genes is probably an underestimate. The microorganisms that live inside and on humans (known as the microbiota) are estimated to outnumber human somatic and germ cells by a factor of ten. Together, the genomes of these microbial symbionts (collectively defined as the microbiome) provide traits that humans did not need to evolve on their own. If humans are thought of as a composite of microbial and human cells, the human genetic landscape as an aggregate of the genes in the human genome and the microbiome, and human metabolic features as a blend of human and microbial traits, then the picture that emerges is one of a human ‘supraorganism’.”

Elizabeth K. Costello, Christian L. Lauber, Micah Hamady, Noah Fierer, Jeffrey I. Gordon, Rob Knight. Bacterial Community Variation in Human Body Habitats Across Space and Time. Science (18 December 2009) 326(5960):1694-1697. http://www.sciencemag.org/content/326/5960/1694.abstract

“Elucidating the biogeography of bacterial communities on the human body is critical for establishing healthy baselines from which to detect differences associated with diseases. … Within habitats, interpersonal variability was high, whereas individuals exhibited minimal temporal variability. Several skin locations harbored more diverse communities than the gut and mouth, and skin locations differed in their community assembly patterns. These results indicate that our microbiota, although personalized, varies systematically across body habitats and time; such trends may ultimately reveal how microbiome changes cause or prevent disease.”

Chris S. Smillie, Mark B. Smith, Jonathan Friedman, Otto X. Cordero, Lawrence A. David, Eric J. Alm. Ecology drives a global network of gene exchange connecting the human microbiome. Nature 480:241–244 (08 December 2011).

“Horizontal gene transfer (HGT), the acquisition of genetic material from non-parental lineages, is known to be important in bacterial evolution1, 2. In particular, HGT provides rapid access to genetic innovations, allowing traits such as virulence3, antibiotic resistance4 and xenobiotic metabolism5 to spread through the human microbiome. Recent anecdotal studies providing snapshots of active gene flow on the human body have highlighted the need to determine the frequency of such recent transfers and the forces that govern these events4, 5. … We show that within the human microbiome this ecological architecture continues across multiple spatial scales, functional classes and ecological niches with transfer further enriched among bacteria that inhabit the same body site, have the same oxygen tolerance or have the same ability to cause disease. This structure offers a window into the molecular traits that define ecological niches, insight that we use to uncover sources of antibiotic resistance and identify genes associated with the pathology of meningitis and other diseases.”

Kjersti Aagaard, Joseph Petrosino, Wendy Keitel, Mark Watson, James Katancik, Nathalia Garcia, Shital Patel, Mary Cutting, Tessa Madden, Holli Hamilton, Emily Harris, Dirk Gevers, Gina Simone, Pamela McInnes, James Versalovic. The Human Microbiome Project strategy for comprehensive sampling of the human microbiome and why it matters. FASEB Journal March 2013 27(3):1012-1022.

“In the future, human microbiomes will be defined at many body sites and during different periods in the human life span. A metagenomic survey alone can describe the microbial communities present, but clinical data are required to understand the factors that affect community composition. Studies must consider the role of sex, diet, race/ethnicity, age, residence location, use of medications, dietary supplements, and hygiene products, and many other factors that shape and cause fluctuations in individual microbiomes. Current NIH-funded demonstration projects are exploring differences in microbial communities and whole metagenomes in disease states.”

PLoS Collections: Table of Contents: The Human Microbiome Project Collection: http://www.ploscollections.org/article/browseIssue.action?issue=info:doi/10.1371/issue.pcol.v01.i13


Becker, Kate. Less Than One Percent Human. Inside NOVA (PBS) February 18, 2011 1:53 PM. http://www.pbs.org/wgbh/nova/insidenova/2011/02/less-than-one-percent-human.html

Gonzalez, Robert T. 10 Ways the Human Microbiome Project Could Change the Future of Science and Medicine. io9. 6/25/12 10:28am.

Kolata, Gina. In Good Health? Thank Your 100 Trillion Bacteria. New York Times June 13, 2012. http://www.nytimes.com/2012/06/14/health/human-microbiome-project-decodes-our-100-trillion-good-bacteria.html?pagewanted=all

Yong, Ed. The bacterial zoo living on your skin. Discover Magazine May 28, 2009. http://scienceblogs.com/notrocketscience/2009/05/28/the-bacterial-zoo-living-on-your-skin/

Yong, Ed. I, Microbes – my Radio 4 talk on the hordes of microbes inside us. Discover Magazine October 19, 2011 4:35 pm. http://blogs.discovermagazine.com/notrocketscience/2011/10/19/i-microbes-my-radio-4-talk-on-the-hordes-of-microbes-inside-us/

Yong, Ed. Microbial Menagerie: A massive study catalogues the microbes in the healthy human body, uncovering an unexpected level of individual variation in microbial makeup, among other surprises.
The Scientist June 13, 2012. http://www.the-scientist.com/?articles.view/articleNo/32215/title/Microbial-Menagerie-/

Yong, Ed. Our bodies are a global marketplace where bacteria trade genes. Discover Magazine October 31, 2011 9:00 am. http://blogs.discovermagazine.com/notrocketscience/2011/10/31/our-bodies-are-a-global-marketplace-where-bacteria-trade-genes/

Zimmer, Carl. How Microbes Defend and Define Us. New York Times July 12, 2010. http://www.nytimes.com/2010/07/13/science/13micro.html

Zimmer, Carl. Our Microbiomes, Ourselves. New York Times December 3, 2011. http://www.nytimes.com/2011/12/04/opinion/sunday/our-microbiomes-ourselves.html

Zimmer, Carl. Tending the Body’s Microbial Garden. New York Times June 18, 2012


American Gut: http://www.indiegogo.com/projects/american-gut

uBiome: http://www.indiegogo.com/projects/ubiome-sequencing-your-microbiome?website_name=ubiome