Category Archives: Thoughts

Informed Consent in a New Era

Informed Consent copy

I’m a big fan of John Wilbanks’ work in the area of open personal health data and informed consent, and have blogged about that here before. Briefly, my awareness of John’s work began with “We Consent” which has now transformed into Sage’s “Participant Centered Consent Toolkit.”

Cool Toys Pic of the day - We Consent
Sage: Participant-Centered Consent Toolkit (E-Consent)

Recently someone asked me a question about “online informed consent.” I think they were remembering my having mentioned John Wilkin’s stuff, a.k.a “portable legal consent” or “portable informed consent.” These and “online informed consent” are … related concepts, but perhaps not as closely related as some might think. Just to complicate matters, people are also using jargon like “dynamic consent” and “broad consent” to mean things related to both of these, but which are not quite the same. There are also people trying to get the phrase “informed consent” converted to “educated consent” as possibly being more meaningful. In this post, I will try to sort some of this out, but I’m no kind of expert in consent, and this is complicated, really REALLY complicated.

First, the short-short explanation. Portable informed consent (PIC) usually is part of online informed consent, but online informed consent (OIC) is rarely portable. Riiiight. OK, a step backwards.


The idea of portable informed consent is (in my mind, at least) analogous to Creative Commons licensing for your own creative works, except that it applies to your own health data. Actually, the idea of this really came from people wanting to share genomic data. You walk through an online informed consent process, agree to which version of a license you are comfortable with, and then when you share your data in a secure repository, that license or consent agreement is attached. People who want to use your data, must agree to follow those predetermined restrictions. Researchers who don’t agree, aren’t allowed to see your data, only data from other folk who agree to whatever guidelines they need for their project. Researchers who don’t follow the rules will be denied access to all of the data.

Personal Genomics

Genomics is basically mapping the genome. Personal genomics is doing this for a person in particular, rather than a species or condition or other collective group. Some people get involved in exploring personal genomics because of simple curiosity, but many are driven by long standing medical challenges without any easily identifiable solution. Some people are terrified at the idea of what they might find out. Others are concerned that the data will result in problems with jobs or insurance. Those urgently seeking help for health problems often want to share and find others who might have insights into their problem. OpenSNP and the Personal Genome Project are two examples of places where people share their genomic data. By making their data public and consenting to its use by researchers, they are hoping to support solutions not only for themselves but for others like them. Making sure that consent is LEGAL is essential for supporting future research. One great example of this is Jay Lake, who contributed his whole DNA sequencing data and that of his tumor, making possible research on new treatments that came too late for him. It’s a powerful story.


Online informed consent is a great deal simpler, in that it mostly takes the usual informed consent process (reading forms, signing forms, filing forms) and puts it all into an online web-based interface in a secure system. But, PIC gets more buzz in the popular press and media, while OIC gets more attention from within the hallways of day-to-day research communities. PIC grew out of work with personal genomics and is designed to make data sharing simpler, research more open, and problem solving more dynamic, all while still being responsive to issues of privacy and ethics. OIC is a tool designed to make the IRB management simpler for researchers.


Dynamic consent is closer to portable consent, but grew more out of tissue and biobanking contexts, rather than data or genomics. Dynamic consent has a lot of nitpicky little options, and allows you to change your mind over time. That’s why it’s dynamic — things keep changing. Right now, dynamic consent is used primarily for what happens to parts of your body that are removed from your body while you are alive, and used for various medical purposes. Sometimes those purposes involved throwing what wasn’t used in the nearest incinerator, but sometimes there is something interesting and the doctors or researchers want to keep a sample for future use.


Now, remember, I’m drastically oversimplifying here. There are many more situations and options that come into play. Healthcare researchers have come to realize that we often don’t know where the next interesting possibility will come from, which is part of why biobanking is becoming more important. A biobank is sort of a library of tissues (meaning parts of human or animals or plants). Biobanks are often focused on a certain type of tissue or condition. Many biobanks collect tissues for a particular kind of cancer, or conditions like Parkinson’s, Alzheimer, autism, etc. Others may focus on a particular organ, like brains, breast tissue, lungs, or genome. In book and journal libraries, the librarians have traditionally spent a lot of time trying to select just the most important material on their special topics, but over generations, we’ve found the most desired content is as often as not the parts that were considered cheap and unimportant at the time, which are now expensive and hard to find, because no one kept them. Some of the same issues are coming up with biobanking, but complicated by the challenge of each and every sample being unique (although there might be copies of cell lines). At least with books, if one library lost theirs, another library might have a copy. Part of the idea of all these different kinds of consent is to try to maximise the number and diversity of samples that can be preserved and made accessible to future researchers.


Presumed consent also related to tissues, actually organ donation, but after you are no longer alive or aware enough to give or change your consent. Where I live, you have to register as an organ donor. If you don’t, and are in a fatal accident, no one is allowed to use your organs as transplants to save the lives of other folk who need new organs to survive. That isn’t how it works in all countries, though. In some countries they have “presumed consent,” where the assumption is that organ donation is fine with you as long as you don’t say NO beforehand. So, opt-in vs. opt-out. That’s the main difference. Sounds simple, doesn’t it? But people have incredibly strong feelings about both of these options.


Broad consent is probably the messiest of all of these. Just look at these article titles!

Can Broad Consent be Informed Consent?

Broad consent is informed consent

Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem?

Broad Consent Versus Dynamic Consent: Pros And Cons For Biobankers To Consider

Broad Consent in Biobanking: Reflections on Seemingly Insurmountable Dilemmas

Should donors be allowed to give broad consent to future biobank research?

You can just feel the tensions rising as you read through the list. It is obvious that this is not an area of consensus. And what can it possibly mean to consent mean when there isn’t an agreement about what consent is?

“Broad consents are not open nor are blanket consents. To give a broad consent means consenting to a framework for future research of certain types.” Steinsbekk KS, Myskja BK, Solberg B. Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem? European Journal of Human Genetics (2013) 21:897–902.

Broad consent attempts to make a best guess of what might be needed by the researcher of the future, and to try to get the individual to agree to a flexible use and reuse of tissues, samples, or data. As you can tell from the titles above, “broad consent” tends to refer to tissues rather than data, but when you get down to brass tacks, all of these could theoretically apply to a wide variety of donated content.


The idea behind all of these myriad forms of consent is knotted into the dynamic between the rights of the individual and the needs of the community. Without research, we stagnate and die, literally, since solutions cannot be discovered for the aches and pains and problems that lead to increased mortality and reduced longevity. As a community, as a species, we don’t make progress without sharing. At the same time, the goal is to reduce harm to individuals, and forcing people to ‘consent’ against their will causes harm. I’ve known people who practically had a nervous breakdown at the idea of becoming an organ donor, the idea of part of them living on in someone else distressed them that deeply. I know others who fear what could happen to them if their genetic data fell into the “wrong hands.” I’m not one of them. I’m a registered organ donor, and I donated my genomic data to OpenSNP. But I still respect the emotional pain that would be caused by forcing consent. It’s an ethical dilemma which our society is obviously still working to solve. While looking at background material for this post I stumbled across two phrases that seemed to express some of the challenges well: “From Informed Consent to No Consent?” “Open Consent for Closed Minds.”

“I’m proposing … that we reach into our bodies and we grab the genotype, and we reach into the medical system and we grab our records, and we use it to build something together.” “I hate [the] word ‘patient.’ I don’t like being patient when … health care is broken.” John Wilbanks

Risky Hashtags (#OzsInbox) – Hashtags of the Week (HOTW): (Week of November 17, 2014)

Social Media Gone Wrong
Social Media Gone Wrong:

Recently, there seems to be a rash of examples of social media gone wrong. Last weekend, it was the Facebook post by a GOP communications staffer criticizing the way President Obama’s children dress.

The weekend before that it was Bill Cosby’s new meme generator, which was promptly used by the public to comment on his presumed sexual practices.

Before that, it was Dr. Oz’s request for health questions he could discuss on the show. That didn’t go so well, either.

There are several more examples along these lines, many including hashtags that have been misappropriated by the audience. Evidently the audiences weren’t quite what was expected by the companies creating the hashtags for their marketing campaigns. The Cosby example was one of those, with #CosbyMeme. The Dr. Oz example is another. He used the hashtag #ozsinbox. Some folk read it as #OzsInbox, but others read it as #OzSinBox. Oops.

Since the HOTW series focuses on hashtags, I thought it would be appropriate to spend a little bit of time talking about how hashtags can go astray. At the same time, I don’t want to scare people away from using Twitter, so there will be a “part two” that talks more about how to use and choose Twitter hashtags to support your real goal. It does take a little advance thought and preparation, but done well, hashtags can be an amazingly powerful and useful way to get your message out and engage with people who are also passionate about it.

For now, just a few tips and thoughts about what happened with Dr. Oz.

TIP ONE: Do you REALLY want to do a Q&A?

The CDC routinely does Twitter chats with Q&As on emerging health topics. They did one recently on Ebola, for example. This is obviously a good thing, and a great way to let people say what worries them and then respond directly from experts with high quality authoritative health information. Don’t give up entirely on Q&As just because of this. But consider, there is a pattern of high profile people offering to do a Q&A and being targeted by those who don’t like them, who then take over the stream. I’ve done Twitter live interviews, but I’m not actually important or famous on the scale of either the CDC or Dr. Oz. So, before you offer to do a Q&A, think about reputation, context, and if you just want attention or actually have something of value to contribute. If you just want attention, are you alright with it not being good attention? Because that sometimes happens. People will tell you exactly what they really think of you, if that’s what you want.

TIP TWO: If doing a Q&A, try to imagine the kinds of questions you might get. Then ask a few friends. Then ask a few enemies. Then ask a half dozen teen age boys.

TIP THREE: Brainstorm alternate spellings & interpretations of the chosen hashtag

TIP FOUR: Are you OK with humor? How will you respond to folk joking around?

TIP FIVE: Consider your partners & employers. How does what you say & do reflect on them?

TIP SIX: What should you do if it all goes cockeyed?


THOUGHT ONE: Reputation & Professionalism

There are a lot of doctors who gleefully tromped all over Dr. Oz, given this opportunity to do so. That set a kind of example. There were a few people who tried to say that they knew Dr. Oz before he was a media star, and that deep down there is a good doctor somewhere under all the hype. Those people were placing themselves at risk if they tried to defend him. Some media sources described the frenzy around the hashtag as being dominated by trolls.

Even if you completely believe that Dr. Oz is a horrible person who has lost his way in the maze of popular pseudoscience, if you entertain yourself by trashing him in a situation like this, how does that make YOU look? Is that the person you want to be? How does this make the profession appear? When doctors get snarky, does healthcare get a pie in the eye? It sets an example for the public when doctors trash each other. That might be a good thing, or it might not. I’m not sure yet. And remember, what you say can be misunderstood just as badly as anything said by anyone.

Dr. Pav Khaira has a background image on his page saying, “This is my simple religion. There is no need for temples; no need for complicated philosophy. Our own brain, our own heart is our temple; the philosophy is kindness.” Obviously, he has a good heart, and means well, but is also willing to poke fun with the best of them.

Who is Dr. Nick?

Dr. Sunil K Sahai was fairly new to Twitter when this came up. He came to regret what was intended as a funny tweet, and blogged about what he should have said instead, and how.

Dr. Jen Gunter became something of a folk hero among the Twitter healthcare community for this cogent post, and a few others.

More health care folk and what they think about Dr. Oz.

Doctors In Oz



Want more? Here are the statistics, metrics, and more tweets.

#OzsInBox Begins

Risk Bites Ten Thousand! (Or, The Bravery of Academic Discourse On Youtube)

"Help us unleash the Elements of Risk Song!"

I LOVE RISK BITES!!! Ok, there you have it. I confess. Here is part of why I like them so much. You see, I don’t just love Risk Bites. I love a LOT of Youtube science education channels. But of the top science channels on Youtube, the ones with a huge fan base and almost aggressive vitality, most of them are either created by kids, young adults, and hobbyists, or they are from huge big money operations. (Please see the APPENDIX at the bottom of this post for more about “What do popular science channels look like?”) What’s missing? Academics and professionals.

And why not? Why shouldn’t there be popular science video channels from academics? WHY NOT?

Yes, universities have Youtube channels and make videos highlighting research by their faculty. Typically, they don’t go viral. Look at them, and you can tell why. They’re good, but dry. They are just not going to get the eyeballs in the same way. They aren’t, well, FUN! A lot of the reason why they aren’t fun is that they’re afraid. They’re afraid of not looking academic. They’re afraid of what their peers will say. They’re afraid of taking the risk, and maybe having someone misunderstand what they said. They’re afraid of looking silly.

MLGSCA09 Cerritos: SocMed Risks - Looking Silly

Academics tend to judge other academics. They complain bitterly when the general public won’t listen to them, but on the flip side, God help any academic who does succeed in getting public attention for communicating science well. Typically, they are ridiculed and undermined by their academic peers. We, as academics, as institutions of learning, need to cut that out. When we belittle and criticize other academics for communicating effectively with the public, it makes all of us look bad. It undermines the credibility of all of science. It weakens our justification for funding, and the understanding the public has of what we do. If you have to criticize another scientist or researcher, stick to the science, and don’t blame them for “being popular.”

Risk Bites is brave. They take the risks that other academics are often afraid to take. They talk about important and sometimes controversial topics. They do so in an engaging and still accurate way, sticking to the good science, and providing more resources in the notes for people who want to explore or learn more. They engage in the conversation with people who comment. They even make videos responding to points brought up in conversation. They are building a community.

Risk Bites is the best example I know of an academic or professional voice that intentionally, purposefully, and responsibly positions itself in the space inhabited by FUN science education videos. Here is more about the background and thought behind what they are trying to do.

So, when I say I love Risk Bites, I am not just talking about the great videos, or the quality of the content, or the awesome and relevant timely selection of topics. I’m talking also about the vision, the mission, the willingness to take risks, the BRAVERY of what they are doing. And I passionately want others to notice, pay attention, and support this grand effort.

When I heard that Risk Bites has a subscription drive, I wanted to write this. I want you to stop and think about how academic science information in Youtube compares to the popular science channels. Check out Sixty Symbols, from the University of Nottingham. That is the only popular science channel I could find from an academic source. Think about why more of us aren’t there, why WE aren’t there, why YOU aren’t there.

And then I want you to do the right thing. I want you to help to get eyeballs on another strong academic science voice in Youtube. I want you to support the people who are brave enough to try. I want you to go to the Risk Bites channel, watch some of their videos, comment, ask questions, tell them what they can do better, and SUBSCRIBE!

Help us unleash the Elements of Risk Song!


VSauce 8,016,315
National Geographic 3,597,161
ASAP Science 3,146,879
VSauce2 3,096,072
Minute Physics 2,573,651
Charlie Is So Cool Like 2,402,791
SciShow 2,234,369
Smarter Every Day 2,194,233
VSauce3 2,112,344
Veritasium 1,965,852
Discovery 1,257,189
Mental Floss 1,123,990
Animal Planet 985,375
Minute Earth 918,132
NatGeoWild 649,592
PBS Idea Channel 580,887
Periodic Videos 500,874
NASA 450,711
The Verge 432,404
Sixty Symbols 426,072
Sick Science 399,926
Discovery TV 330,897
Science Channel 266,605
The Brain Scoop 248,660
SciShow Space 246,757
It’s OK to be Smart 239,810
Best0fScience 162,251
Bizarre ER 159,184
Spangler Science TV 146,369
Hard Science 131,431
New Scientist 117,609

What We Don’t Know: Mike Tyson, the Invisible Crime, & the Risks of “Talk to the Hand”

“I fear for anyone caught between what they know and what they don’t yet know that they don’t know.” Welcome to Night Vale, Episode One: About Transcript More

A few days ago, Mike Tyson “came out” in a radio interview about having been sexually assaulted when he was 7 years old.

Mike Tyson opens up about Sexual Abuse – @OpieRadio @JimNorton

He had been snatched off the streets by “an old man,” sexually assaulted, and escaped. Male survivors of sexual assault have been called “silent victims,” and the sort of thing that happened to Mike Tyson has been called the perfect crime, because neither the victim nor the assailant will talk about it. This has resulted in a false perception that it doesn’t happen, which increases the misunderstanding and stigma associated with it.

“I don’t always remember. But, um, maybe I do, but I don’t.” Mike Tyson, on being sexually assaulted as a child.

Me, I completely understand this. There are memories so painful and raw that, even while you never forget they are there, you explicitly avoid thinking about them. It’s a kind of PTSD thing. And, guess what? If you dig deep enough, everyone has something they avoid thinking about. I was multitasking while writing something else, and listening to an interview with Nadia Bolz-Weber. Towards the end of that interview, she described some of her thoughts on how some ways in which people are ‘broken’ in certain ways are perceived as sexier, more newsworthy, more eye-catching, more heroic, more popular than others. That people with those specific disabilities or conditions end up almost as a kind of sacrificial lamb, symbolically carrying the brokenness for all of us. Her conclusion was that we are all broken in some way, and that focusing on some kinds of brokenness to the exclusion of others is a disservice to both.

The other part of what Reverend Bolz-Weber said that really grabbed my attention was when she talked about the difficult connection between being broken and having appropriate boundaries. She talked about how important it is for her to be there for her congregation and not place her burdens on them. So while she talks about bad things that she’s gone through or dark places in her life, she talks about the ones that are well in the past, not the ones that trouble her deeply to this moment.

“I always try to preach from my scars, not my wounds.” Nadia Bolz-Weber |

I’m observing a necessary tension between the harm from keeping secrets and the harms from telling secrets. Since it is hard for men to bring this up, I want to spend some time on this blog, write a few posts, and collect some resources for people about the topic of male sexual trauma. That will come, but just to start, try reading this popular article about how women are taught to keep themselves safer (I can’t say “safe” because the idea is currently impossible), to avoid sexual assault. Read this once as it is written. Then read it again, remembering that rape of men and boys is far more common than you probably believe.

If We Gave Men the Same Rape Advice We Give Women, Here’s How Absurd It Would Sound

Remember, “Only With Consent” needs to become an assumption for everyone. All genders, all races, all cultures.

Only With Consent

Only With Consent

Anonymous Social Media Overview, Part Three: The Whisper Controversy & Beyond

I had said in Part Two of this series that I was waiting to talk about the Whisper Controversy because it was still unfolding so dramatically. Things are starting to wind down, and so last night I put together a Storify mapping out my perspective of the timeline of how this has all been happening.

Briefly, Whisper was trying to do a good thing, but it seemed to go wrong.
Guardian called them out on issues related to privacy & user tracking.
Story exploded.
Whisper defended themselves (mostly via Editor-in-Chief).
More explosions.
Guardian gleefully expanded on their original story.
Yada yada.
Whisper tries to regain trust (mostly via CEO).
Editorial team “laid off” pending investigation.
And now the clean up work starts.

Check the Storify for more details and specifics.

Meanwhile, Whisper is not alone. Far from it! Snapchat was hacked. Snapchat is probably the most famous anonymous social media app right now. Before they were hacked, all sorts of people were making tools (1, 2, 3) to “break” Snapchat’s rules about keeping copies of deleted pictures without permission. (The same sort of thing is happening on other ‘anonymous’ social platforms, like Tumblr with KnowAnon. And people posted private sex tapes on YikYak, which is also infamous for cyberbullying and violence and threats.) And the Federal Trade Commission is investigating some of the problems with Snapchat. People still trust and use Snapchat. And there are apps designed explicitly to, well, invade your privacy on an opt-in basis, like PeekInToo. This post has focused on the privacy issues, but violence, dishonesty, and cyberbullying remain significant issues in many online spaces. So, that’s the bad news. In the next post, I’ll look at some of the good things being done with social media.

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


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

LIVESTREAM: Available with pre-registration through the MedX 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.




HASHTAGS: #TEDMED; #TEDMEDlive; #TEDMEDhive; #GreatChallenges.

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

Health Fair Meet Maker Faire! Part 3: Our Announcement!!

You saw Part One, in which the idea was born, and Part Two, in which the concept was tested and proven. So what actually happened? We’re doing it. We’re really DOING IT! By “it” I mean a health-themed maker faire/fest at the University of Michigan. REALLY!


We Make Health
We Make Health:

Emily Puckett Rogers had given us a heads-up about requirements for working with the official Maker Faire folk, which I had not realized was an actual brand name. So we don’t yet know if this is going to be a Mini-Maker Faire or a Maker Fest or what, but it is definitely happening!

Please note that the We Make Health event is a project of Health Design By Us, a participatory behavior change project funded as part of the UM Provost’s Third Century Initiative. It’s a completely awesome and wonderful collaboration, and you’ll be hearing more about it if you read this blog regularly.


Saturday, August 16, 2014

We are still settling on what happens when during the day. We are brainstorming roughly 10am to 6pm, but that may change.


Google Map for Palmer Commons
Palmer Commons:,-83.7335814,17z/data=!3m1!4b1!4m2!3m1!1s0x883cae4266554837:0x732dcfa6f8fb7dbe


Joyce Lee, Doctor as DesignerPF Anderson, Self Portrait as ShadowMatt Kenyon, Artist

Us! We!

Well, Joyce Lee, Matt Kenyon, and I are taking point on planning the project (with the capable assistance of Emily Hirschfeld). Joyce is from the UM Medical School and Mott Children’s Hospital, Matt is with the School of Art and Design, and I, of course, am part of the University Libraries, Taubman Health Sciences Library. However, we have an email list for folk interested in the event which currently has over 90 people signed up. Many of them have contributed ideas, suggested contacts, volunteered to do booths or presentations, and so forth. We are reaching out to many community maker communities, and have received endorsements from several of them. You’ll hear more about our partners as the event moves closer.


1) Sign up at the We Make Health web site to receive information and updates from the Health Design By Us project.

2) If you are part of the University of Michigan, you can sign up through M-Community for the MakeHealthUM email list.

3) If you want to contact the event coordinators, our Make Health Team, you can reach us at: MAKEHEALTH at-sign UMICH dot EDU.

4) Twitter! The event itself is on twitter, as is Health Design By Us.

Make Health: @MakeHealthUM
Health Design By Us: @HealthByUs

If you want to chat with Joyce or me individually, we are also pretty easily reached through Twitter:

Joyce: @joyclee
Patricia: @pfanderson

5) Please feel free to comment on this post! We will have a blog for the actual event, but that’s still being set up. More soon!


What’s coming next is more blogposts and more news! We will highlight some of the technologies and people that will be highlighted at our event, the partners we’re working with, and exciting spinoff projects to help the energy last beyond the actual event. We’ll tell you more about some of the other folk working on health maker events, and other maker communities around the University and the Ann Arbor community.