Tag Archives: public health

Scaling the QS Movement by Larry Smarr

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From the Quantified Self Public Health Symposium.

Larry Smarr’s major contributions to scientific progress are well known. A physicist and the founding director of the National Center for Supercomputing Applications (NCSA), he helped bring the power of computing to scientific research at a time when computers will still highly specialized instruments. Today he is the Director of the California Institute for Telecommunications and Information Technology (Calit2), one of the most innovative research institutes in the world.

He’s also an avid self-tracker, using his own data to correctly self-diagnose the onset of Crohn’s disease. At the 2015 Quantified Self Public Health Symposium, Larry spontaneously launched the meeting with a description of what it was like to be at NCSA in the early 90’s when his student Mark Andreessen, the creator of the first popular Web browser, could review every new website in the world by hand. “We could keep up with that little bit of the exponential.” Larry asked us to consider that a similar experience of scaling lies ahead of us in the Quantified Self movement. What happens at the birth of new technologies and new fields of knowledge, when very early participants get to know each other and reflect together on what values and uses will be encoded in our tools, can influence developments that affect hundreds of millions of people.

Watch Larry’s talk on Medium.

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Quantified Self Public Health: Stephen Downs on Building a Culture of Health

[Editor's Note] This May we hosted our second Quantified Self Public Health Symposium in San Diego at the University of California, San Diego. With support from the Robert Wood Johnson Foundation we brought together 150 researchers, toolmakers, individuals from government institutes, and science leadership. During the meeting we had multiple conversations, talks, and show&tells that helped guide our QS Access mission – to understand and improve personal data access for person and public health. Today we’re excited to start posting videos from that meeting. If you’re inspired by what you see here and want to help us raise the conversation surrounding personal data access we invite you to get in touch and follow along on Medium and here on the QS website. 

Stephen Downs, Chief Technology and Information Officer at the Robert Wood Johnson Foundation looks forward to the day when healthy choices are easy choices. That day may not be tomorrow, but identifying the early adopters, innovative thinkers, and technological disruptors are at the forefront of moving us one step closer to that healthier world. For Stephen and the Foundation, building a culture of health includes “engaging sectors that are not nominally about health.” In his presentation to the Quantified Self Public Health Symposium, Stephen shares how groups within education, community development, technology, and more have a key role to play in improving the state of our health, and health care.

This post is part of our Access Matters publication. We invite you to share your data access stories, and this article with the #qsaccess hashtag and follow along on @quantifiedself.

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Announcing the QS Access Program

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Self-knowledge through numbers. Personal meaning from personal data. These are the guiding principles of the work we do here at Quantified Self Labs. Through our editorial work, our events, and our support of a worldwide network of meetups we are focused on shaping the culture of personal data and it’s impact on our lives. We realized some time ago that impact is determined not only by data analysis skills, scientific training, or even the use of new tools and technologies (although all of these play an important role). Rather, impact is directly related to our ability to access the data we’re creating and collecting during the course of our lives.

We’re happy to announce our new QS Access Program with support from the Robert Wood Johnson Foundation. We’re working together to bring issues, ideas, and insights related to personal data access for personal and public health to the forefront of this evolving conversation. We hope you join us.

You can read the full release here. Below are two quotes from the release that embody our current and future work.

“The Robert Wood Johnson Foundation is working with many partners to build a Culture of Health in the U.S., and in that culture of health, people are attuned to the factors that influence their health and the health of their communities,” said Stephen Downs, Chief Information and Technology Officer at the Robert Wood Johnson Foundation. “The explosion of data on day-to-day life creates tremendous potential for new insights about health at both the personal and population levels. To realize this potential, people need access to their data — so they can use services that surface the connections between symptoms, behaviors and community environments and so they can choose to contribute their data to important research efforts.”

“We believe that when individuals, families, and communities are able to ask their own questions of their own data, everybody benefits,” said Gary Wolf, Director of QS Labs. “We look forward to doing our part to build a culture of health with the support of the Robert Wood Johnson Foundation, and we invite anybody who has an access story to tell to get in touch.”

If you’d like to learn more or get involved. Please contact:
Ernesto Ramirez
Program Director
Quantified Self Labs
ernesto@quantifiedself.com

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Access Matters

Someday, you will have a question about yourself that impels you to take a look at some of your own data. It may be data about your activity, your spending at the grocery store, what medicines you’ve taken, where you’ve driven your car. And when you go to access your data, to analyze it or share it with somebody who can help you think about it, you’ll discover…

You can’t.

Your data, which you may have been collecting for months or years using some app or service that you found affordable, appealing, and useful, will be locked up inside this service and inaccessible to any further questions you want to ask it. You have no legal right to this data. Nor is there even an informal ethical consensus in favor of offering ordinary users access to their data. In many cases, commercial tools for self-tracking and self-measurement manifest an almost complete disinterest in access, as demonstrated by a lack of data export capabilities, hidden or buried methods for obtaining access, or no mention of data access rights or opportunities in the terms of service and privacy policy.

Now is the time to work hard to insure that the data we collect about ourselves using any kind of commercial, noncommercial, medical, or social service ought to be accessible to ourselves, as well as to our families, caregivers, and collaborators, in common formats using convenient protocols. In service to this aim, we’ve decided to work on a campaign for access, dedicated to helping people who are seeking access to their data by telling their stories and organizing in their support. Although QS Labs is a very small organization, we hope that our contribution, combined with the work of many others, will eventually make data access an acknowledged right.

The inspiration for this work comes from the pioneering self-trackers and access advocates who joined us last April in San Diego for a “QS Public Health Symposium.” Thanks to funding support from the Robert Wood Johnson Foundation, and program support from the US Department of Health And Human Services, Office of the CTO, and The Qualcomm Institute at Calit2, we convened 100 researchers, QS toolmakers, policy makers, and science leaders to discuss how to improve access to self-collected data for personal and public benefit.  During our year-long investigation leading up to the meeting, we learned to see the connection between data access and public health research in a new light.

If yesterday’s research subjects were production factors in a scientist’s workshop; and if today’s participants are – ideally – fully informed volunteers with interests worthy of protection; then, the spread of self-tracking tools and practices opens the possibility of a new type of relationship in which research participants contribute valuable craft knowledge, vital personal questions, and intellectual leadership along with their data.

We have shared our lessons from this symposium in a full, in-depth report from the symposium, including links to videos of all the talks, and a list of attendees. We hope you find it useful. In particular, we hope you will share your own access story. Have you tried to use your personal data for personal reasons and faced access barriers? We want to hear about it.

You can tweet using the hashtag #qsaccess, send an email to labs@quantifiedself.com, or post to your own blog and send us a link. We want to hear from you.

The key finding in our report is that the solution to access to self-collected data for personal and public benefit hinges on individual access to our own data. The ability to download, copy, transfer, and store our own data allows us to initiate collaboration with peers, caregivers, and researchers on a voluntary and equitable basis. We recognize that access means more than merely “having a copy” of our data. Skills, resources, and access to knowledge are also important. But without individual access, we can’t even begin. Let’s get started now.

An extract from the QSPH symposium report

[A]ccess means more than simply being able to acquire a copy of relevant data sets. The purpose of access to data is to learn. When researchers and self-trackers think about self-collected data, they interpret access to mean “Can the data be used in my own context?” Self-collected data will change public health research because it ties science to the personal context in which the data originates. Public health research will change self-tracking practices by connecting personal questions to civic concerns and by offering novel techniques of analysis and understanding. Researchers using self-collected data, and self-trackers collaborating with researchers, are engaged in a new kind of skillful practice that blurs the line between scientists and participants… and improving access to self-collected data for personal and public benefit means broadly advancing this practice.

Download the QSPH Report here.

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QS | Public Health Symposium: Margaret McKenna

This week we’re taking a look back at our 2014 Quantified Self Public Health Symposium and highlighting some of the wonderful talks and presentations.  We convened this meeting in order to bring together the research and toolmaker communities. Both of these groups have questions about data, research, and how to translate the vast amount of self-tracking data into something useful and understandable for a wider audience.

As part of our pre-conference work we took some time speak with a few attendees who we thought could offer a unique perspective. One of those attendees was Margaret McKenna. Margaret leads the Data & Analytics team at RunKeeper, one of the largest health and fitness data platforms. In our conversation and in her wonderful talk below Margaret spoke about two important issues we, as a community of users, makers, and researchers, need to think about as we explore personal data for the public good.

The first of these is matching research questions with toolmaker needs and questions. We heard from Margaret and others in the toolmaker community that there is a near constant stream of requests for data from researchers exploring a variety of questions related to health and fitness. However, many of these requests do not match the questions and ideas circulating internally. For instance, she mentioned a request to examine if RunKeeper user data matched with the current physical activity guidelines. However, the breadth and depth of data available to Margaret and her team open up the possibility to re-evaulate the guidelines, perhaps making them more appropriate and personalized based on actual activity patterns.

Additionally, Margaret brought up something that we’ve heard many times in the QS community – the need to understand the context of the data and it’s true representativeness. Yes, there is a great deal of personal data being collected and it may hold some hidden truths and new understanding of the realities of human behavior, but it can only reveal what is available to it. That is, there is a risk of depending too much on data derived from QS tools for “answers” and thus leaving out those who either don’t use self-tracking or don’t have access or means to use them.

Enjoy Margaret’s talk below and keep an eye out for more posts this week from our Quantified Self Public Health Symposium.

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QS | Public Health Symposium: Susannah Fox on Secret Questions and Naked Truths

Personal data, personal meaning. That’s the guiding principle of much of the work we do here at QS Labs. From our show&tell talks and how-to’s, to our worldwide network of meetups and carefully curated unconferences, we strive to help people make sense of their personal data and inspire others to do the same. However, over the last few years we’ve started to see that there is a third actor in the Quantified Self space. Data collected in the ordinary course of life can hold clues about some of our most pressing questions related to human health and wellbeing. Personal data might be a resource for public good.

On April 3, 2014 Quantified Self Labs with support from the Robert Wood Johnson Foundation, the US Department of Health and Human Services, and Calit2 at UCSD hosted the first Quantified Self Public Health Symposium. We gathered over 100 researchers, toolmakers, science leaders, and pioneering users to open up a discussion about what it means to use personal data for the public good. Over the course of the day we hosted a variety of talks, discussions, and toolmaker demonstrations. This week we’ll be highlighting some of the outstanding talks delivered at the symposium and we’re kicking it off with one of our favorites.

Susannah Fox has been a friend and colleague for many years. Her pioneering work at the Pew Internet and Life Project has inspired us many times over and remains the standard for research pertaining to self-tracking. We asked Susannah to help us open up the meeting by discussing some of her research findings as well as her thoughts on self-tracking in the broader landscape of health and healthcare.

(A transcript of Susannah’s talk can be found on her website here.)

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