“We allow, respect, and support first person observations. First person involvement dramatically affects the type of questions that can be asked and the type of answers that are wanted.” — Gary Wolf

Gary Wolf opened the 2016 Quantified Self Public Health symposium with an explanation of the history and purpose of the meeting and an outline of the work to be done. He proposed four broad areas of focus:

Equity: How will the things we are learning become more broadly useful while learning from others whose questions are different?

Infrastructure: What tools are missing for accessing and making sense of our data?

Dissemination: Can we create a high quality journal to publish what we believe to be new discoveries, and expose them to criticism?

Community: There is misunderstanding and lack of alignment between people who are collecting data, companies making the tools, and researchers who possess both advanced scientific skill and responsibility for tracking and improving public health. How can we have a productive dialogue despite our different goals?

To understand more about what’s happening in Quantified Self Public Health, watch Gary’s short opening talk.

Highlights from Quantified Self Public Health 2016

Introduction to Quantified Self Public Health Symposium 2016

Announcing N-of-1: The Journal of the Quantified Self

Let’s Make Active Self-Tracking Much Easier With A One Touch Device

How I Use Self-Collected Data to Change the Power Dynamic in My Clinical Practice

At the Other End of Your Screen for Depression is a Real Person… Who May Suffer from Depression

We’re Not Waiting for Our Automatic Pancreas System

Frameworks for a New Field: Quantified Self Public Health

Learning About Collaboration in Community Science From from Youth Leaders in the Klamath Basin

We’re Trying to Improve Pacific Islander Health — So Why Work with Academics?

QSPH16: Community-Academic Collaboration Full Q&A

“Single subject research is generally not even thought of as science.” — Mark Drangsholt

Imagine an earth-like planet in a distant galaxy populated by intelligent creatures with a physiology similar to our own. Like us, the aliens have discovered the scientific method, and they even use familiar experimental tools for health research such as case-crossover studies and placebo controls. However, the aliens rarely aggregate data from many individuals. In fact, such aggregation is frowned upon. After all, why ruin accurate individual data by mashing it into a synthetic construct like a population? Now you’re guaranteed to be wrong about everybody!

With this beautiful little science fiction parable, Dr. Mark Drangsholt introduced N-of-1: The Journal of the Quantified Self. There’s a pressing need for a journal where scientists and self-trackers can report new discoveries and share methodological advances. As a first step toward independent publication, a group of long-time Quantified Self Public Health researchers has been invited by editor-in-chief Sabine Koch to produce a “focus theme” for the respected Methods of Information in Medicine, scheduled for publication in 2017. This is truly a milestone. In the video below you can listen in on the discussion Mark had about our new journal with Dr. Dawn Lemanne, who regularly uses N-of-1 techniques in her innovative oncology practice. (And if you are using techniques, please get in touch. We’d love to read your manuscripts, and even if you don’t have a paper ready there are many other ways to help.)

Highlights from Quantified Self Public Health 2016

Introduction to Quantified Self Public Health Symposium 2016

Announcing N-of-1: The Journal of the Quantified Self

Let’s Make Active Self-Tracking Much Easier With A One Touch Device

How I Use Self-Collected Data to Change the Power Dynamic in My Clinical Practice

At the Other End of Your Screen for Depression is a Real Person… Who May Suffer from Depression

We’re Not Waiting for Our Automatic Pancreas System

Frameworks for a New Field: Quantified Self Public Health

Learning About Collaboration in Community Science From from Youth Leaders in the Klamath Basin

We’re Trying to Improve Pacific Islander Health — So Why Work with Academics?

QSPH16: Community-Academic Collaboration Full Q&A

Announcing N-of-1: The Journal of the Quantified Self was originally published in Quantified Self Public Health on Medium, where people are continuing the conversation by highlighting and responding to this story.

“Your consciousness is part of the instrumentation, and there are certain phenomena that can only be accessed using our consciousness.” — Thomas Christiansen

Thomas Christiansen has learned a tremendous amount from tracking his sneezes for the past five years. His more than 100,000 observations have allowed him to vastly improved his allergies and eliminate the need for medication. But such detailed self-tracking is a hassle. He estimates that he has spent more than 500 hours just making simple observations. It takes time to pull a smart phone out of a pocket, open an app, and note an event. With his collaborator Jakob Eg Larsen, Thomas has created a one-touch smartwatch app that allows anybody to record the time, location, and intensity of a self-observation: a sneeze, a headache, an episode of anger, or anything else we’re capable of noticing. You can watch Thomas’ demonstrate his tracker in the video below.

• Totti Labs
• Thomas Christiansen
• Jakob Eg Larsen

Highlights from Quantified Self Public Health 2016

Introduction to Quantified Self Public Health Symposium 2016

Announcing N-of-1: The Journal of the Quantified Self

Let’s Make Active Self-Tracking Much Easier With A One Touch Device

How I Use Self-Collected Data to Change the Power Dynamic in My Clinical Practice

At the Other End of Your Screen for Depression is a Real Person… Who May Suffer from Depression

We’re Not Waiting for Our Automatic Pancreas System

Frameworks for a New Field: Quantified Self Public Health

Learning About Collaboration in Community Science From from Youth Leaders in the Klamath Basin

We’re Trying to Improve Pacific Islander Health — So Why Work with Academics?

QSPH16: Community-Academic Collaboration Full Q&A

Let’s Make Active Self-Tracking Much Easier With A One Touch Device was originally published in Quantified Self Public Health on Medium, where people are continuing the conversation by highlighting and responding to this story.

“The power and the magic is at the intersection of expertise on the part of the clinician, family, and child.” — Amy Edgar

Amy Edgar founded a clinical practice in Allentown, Pennsylvania, that treats over 2,500 children and families each year. She collects traditional clinical data about her patients, but the magic happens when her data meets the data they collect about themselves. With permission from patients and families, Amy shares some of their self-tracking stories — about tracking sleep, tracking menstruation, and tracking activity — and talks about how sharing data can shift the dynamic in clinical relationships away from mere treatment and toward a more powerful co-creation of health.

• Children’s Integrated Center for Success
• Amy Edgar

Highlights from Quantified Self Public Health 2016

Introduction to Quantified Self Public Health Symposium 2016

Announcing N-of-1: The Journal of the Quantified Self

Let’s Make Active Self-Tracking Much Easier With A One Touch Device

How I Use Self-Collected Data to Change the Power Dynamic in My Clinical Practice

At the Other End of Your Screen for Depression is a Real Person… Who May Suffer from Depression

We’re Not Waiting for Our Automatic Pancreas System

Frameworks for a New Field: Quantified Self Public Health

Learning About Collaboration in Community Science From from Youth Leaders in the Klamath Basin

We’re Trying to Improve Pacific Islander Health — So Why Work with Academics?

QSPH16: Community-Academic Collaboration Full Q&A

How I Use Self-Collected Data to Change the Power Dynamic in My Clinical Practice was originally published in Quantified Self Public Health on Medium, where people are continuing the conversation by highlighting and responding to this story.

After listening to presentations by community leaders and researchers working on major projects using self-collected data to improve health, the entire group of participants at Quantified Self Public Health 2016 got into a spirited and frank discussion. While we weren’t set up to carefully capture the image of every questioner, this Q&A session is well worth listening to if you care about the complex and challenging issues of trust, collaboration, and ethical engagement in research.

Highlights from Quantified Self Public Health 2016

Introduction to Quantified Self Public Health Symposium 2016

Announcing N-of-1: The Journal of the Quantified Self

Let’s Make Active Self-Tracking Much Easier With A One Touch Device

How I Use Self-Collected Data to Change the Power Dynamic in My Clinical Practice

At the Other End of Your Screen for Depression is a Real Person… Who May Suffer from Depression

We’re Not Waiting for Our Automatic Pancreas System

Frameworks for a New Field: Quantified Self Public Health

Learning About Collaboration in Community Science From from Youth Leaders in the Klamath Basin

We’re Trying to Improve Pacific Islander Health — So Why Work with Academics?

QSPH16: Community-Academic Collaboration Full Q&A

For me, nine years of daily tracking has been incredibly helpful. When you have depression you think it’s always been like this, you’re never going to get any better and you never have been any better. Daily tracking gives you evidence that it hasn’t always been like this. — Jon Cousins

Over the past two weeks, how often have you been bothered by thoughts that you’d be better off dead?

That is a question from the Patient Health Questionnaire, a recommended tool for depression screening. The U.S. Preventive Services Task Force recently recommended such screening for all adults. Jon Cousins, whose tools for self-tracking mood and emotion are widely used in the U.S. and the U.K., points out that asking such a question can cause harm. While acknowledging that the recommendation comes from a desire to offer treatment to people who need it, Jon proposes that we consider a different style of assessment, one that is more human, direct, and positive. Many people already track their mood using popular tools. We’ve learned a lot about what works — why not call upon our expertise?

• Nudge Your Way to Happiness
• Moodnudges
• Jon Cousins
• U.S. Preventive Services Task Force recommendation for a national screen for depression

Highlights from Quantified Self Public Health 2016

Introduction to Quantified Self Public Health Symposium 2016

Announcing N-of-1: The Journal of the Quantified Self

Let’s Make Active Self-Tracking Much Easier With A One Touch Device

How I Use Self-Collected Data to Change the Power Dynamic in My Clinical Practice

At the Other End of Your Screen for Depression is a Real Person… Who May Suffer from Depression

We’re Not Waiting for Our Automatic Pancreas System

Frameworks for a New Field: Quantified Self Public Health

Learning About Collaboration in Community Science From from Youth Leaders in the Klamath Basin

We’re Trying to Improve Pacific Islander Health — So Why Work with Academics?

QSPH16: Community-Academic Collaboration Full Q&A

At the Other End of Your Screen for Depression is a Real Person… Who May Suffer from Depression was originally published in Quantified Self Public Health on Medium, where people are continuing the conversation by highlighting and responding to this story.

“We are not waiting. Why are you?” — Scott Leibrand

The session starts with a grand vision. “Someday data from a measurement device like a continuous glucose monitor will be directly linked to a dosing device like an insulin pump. Such systems are already in trial, so within a few years — “

Wait, hold on, someone has her hand up. A person from the audience insists on interrupting this futuristic blather. Dana Lewis rises from her seat to announce that she is already using a DIY artificial pancreas system. And she’s brought some friends along, too. In what will be widely recognized as one of our day’s highlights, the QS Public Health stage is relinquished to a remarkable group of self-trackers, hackers, and activists with diabetes who are improving their own care with DIY tools and amazing community support. Watch the full video below.

• OpenAPS
• Dana Lewis

Highlights from Quantified Self Public Health 2016

Introduction to Quantified Self Public Health Symposium 2016

Announcing N-of-1: The Journal of the Quantified Self

Let’s Make Active Self-Tracking Much Easier With A One Touch Device

How I Use Self-Collected Data to Change the Power Dynamic in My Clinical Practice

At the Other End of Your Screen for Depression is a Real Person… Who May Suffer from Depression

We’re Not Waiting for Our Automatic Pancreas System

Frameworks for a New Field: Quantified Self Public Health

Learning About Collaboration in Community Science From from Youth Leaders in the Klamath Basin

We’re Trying to Improve Pacific Islander Health — So Why Work with Academics?

QSPH16: Community-Academic Collaboration Full Q&A

We’re Not Waiting for Our Automatic Pancreas System was originally published in Quantified Self Public Health on Medium, where people are continuing the conversation by highlighting and responding to this story.

“It’s happening. The incredible inventiveness, the incredible caring that individuals have to make the world better, whether they have permission or not: that is the force that is being unleashed.” — Larry Smarr

Our co-convener Larry Smarr, current director of Calit2, previously the founding director of the National Center for Supercomputing Applications, where the web browser was born, offers a brief assessment of what’s happening today at the beginning our new field. He points out that he has been through a few of these transformations and asks: what are the changes we need to make in our scientific institutions to allow it to flourish? In his talk, Larry acknowledges the wonderful news that one of the pioneers of using technologies of self-observation in health, Patty Brennan, has recently been appointed the director of the National Library of Medicine. And he raises the fundamental question of who owns the rights to the data our bodies can generate.

Highlights from Quantified Self Public Health 2016

Introduction to Quantified Self Public Health Symposium 2016

Announcing N-of-1: The Journal of the Quantified Self

Let’s Make Active Self-Tracking Much Easier With A One Touch Device

How I Use Self-Collected Data to Change the Power Dynamic in My Clinical Practice

At the Other End of Your Screen for Depression is a Real Person… Who May Suffer from Depression

We’re Not Waiting for Our Automatic Pancreas System

Frameworks for a New Field: Quantified Self Public Health

Learning About Collaboration in Community Science From from Youth Leaders in the Klamath Basin

We’re Trying to Improve Pacific Islander Health — So Why Work with Academics?

QSPH16: Community-Academic Collaboration Full Q&A

“Our staples were acorns and salmon. Within the last five generous that’s all been taken away from us and replaced with sugar and flour. Diabetes runs rampant, so we’re educating our children.” — Grant Gilkison

Four years ago Grant Gilkison set out to help the young people in his community explore the reality of the food system in the Klamath Basin. Although this remote area of Northern California coast is ecologically rich, with a history of knowledge and trade in a vast range of wild and cultivated foods, today it is a food desert. Collaborating with UC Davis researcher Kathy Kim, Grant involved local youth in assessing food security by scanning foods, measuring health, and surveying residents of the towns along the river. In the video below, you can listen to Grant, Kathy, and Jose Ramirez, one of the youth leaders who worked on the food security study, talk with other symposium participants about the successes of their program and the barriers they dealt with. Their presentation and the Q&A that follows is deeply revealing about the prospects for collaboration in community science and the possibilities for change.

• CAPRI
• Karuk Youth Leadership Council
• Kathy Kim

Highlights from Quantified Self Public Health 2016

Introduction to Quantified Self Public Health Symposium 2016

Announcing N-of-1: The Journal of the Quantified Self

Let’s Make Active Self-Tracking Much Easier With A One Touch Device

How I Use Self-Collected Data to Change the Power Dynamic in My Clinical Practice

At the Other End of Your Screen for Depression is a Real Person… Who May Suffer from Depression

We’re Not Waiting for Our Automatic Pancreas System

Frameworks for a New Field: Quantified Self Public Health

Learning About Collaboration in Community Science From from Youth Leaders in the Klamath Basin

We’re Trying to Improve Pacific Islander Health — So Why Work with Academics?

QSPH16: Community-Academic Collaboration Full Q&A

“We were at one in what we were trying to do, in terms of helping people. I said, let’s start tomorrow. She said no, I need a whole year. I said, ‘No, no — that’s too long, we don’t have a whole year!” — Siaosi Veimau

Health activists and researchers have been exploring ideas for working together that put the scientific professionals in a service role to community health leaders. It just makes sense: People are experts in their own lives, and people who dedicate themselves to improving the health of their communities have questions that need answers from researchers with powerful analytical methods.

In 2011 Siaosi Veimau and Coral Kenolio of Pacific Islander Community Health connected with Christina Holub from San Diego State University and the three of them decided to try to evaluate the effectiveness of culturally inspired exercise in the San Diego Native Hawaiian and Pacific Islander community. Our discussion of the barriers to collaboration was intense and revealing. Among the clear lessons: Institutional traditions that justify themselves with appeals to the best interests of research subjects often end up reinforcing the elitism and isolation of academic professionals, while denying communities access to research resources.

• Pacific Islander Community Health
• Christina Holub
• Siaosi Veimau

Highlights from Quantified Self Public Health 2016

Introduction to Quantified Self Public Health Symposium 2016

Announcing N-of-1: The Journal of the Quantified Self

Let’s Make Active Self-Tracking Much Easier With A One Touch Device

How I Use Self-Collected Data to Change the Power Dynamic in My Clinical Practice

At the Other End of Your Screen for Depression is a Real Person… Who May Suffer from Depression

We’re Not Waiting for Our Automatic Pancreas System

Frameworks for a New Field: Quantified Self Public Health

Learning About Collaboration in Community Science From from Youth Leaders in the Klamath Basin

We’re Trying to Improve Pacific Islander Health — So Why Work with Academics?

QSPH16: Community-Academic Collaboration Full Q&A