Tag Archives: ResearchKit
A few notes up top here. First, if you haven’t yet checked it out please give our new QS Radio podcast a listen. We’d love to hear what you think!
Second, our QS15 Conference & Exposition is fast approaching. It’s going to be a wonderful and jam-packed three days of talks, sessions, and amazing demos. Our Early Bird tickets are almost gone. Register before Monday (May 11th) to get $200 off the regular price!
Now, on to the links!
Data (v.) by Jer Thorp. So many people in my network were sharing this over the last few days I had to give it a read, and I’m happy I did. Jer Thorp makes a succinct argument for turning the word “data” from a amorphous blob of a noun into a verb.
By embracing the new verbal form of data, we might better understand its potential for action, and in turn move beyond our own prescribed role as the objects in data sentences.
How Not to Drown in Numbers by Alex Peysakhovich and Seth Stephens-Davidowitz. In this great article, two data scientists make the case for “small data” – the surveys and rich contextual information from open-ended questions.
We are optimists about the potential of data to improve human lives. But the world is incredibly complicated. No one data set, no matter how big, is going to tell us exactly what we need. The new mountains of blunt data sets make human creativity, judgment, intuition and expertise more valuable, not less.
Data, Data, Everywhere, but Who Gets to Interpret It? by Dawn Nafus. We’ve been collaborating with Dawn and her team at Intel for quite a while, and we’ve learned a lot. Reading this wonderful piece lead to even more learning. Dawn uses this article to describe not only the community of individuals who track, but also why, and what happens when it comes time to interpret the data. (You can explore DataSense, the tool Dawn and her team have been working on, here: makesenseofdata.com)
Applying Design Thinking to Protect Research Subjects by Lori Melichar. Lori is a director at the Robert Wood Johnson Foundation and recently did some work related to how institutional review boards (IRBs) function. For those who don’t know, IRBs are the groups/committee that evaluate the benefits and harms of human subjects research. Their process hasn’t changed much in the few decades, but the face of research has. In this short post Lori describes the ideas that came from thinking about how we might re-design the current system.
ResearchKit and the Changing Face of Human Subjects Protections by Avery Avrakotos. As mentioned above, research is changing, and one of the big changes we’re currently seeing is the use of mobile systems like Apple’s ResearchKit. It’s not all sunshine and roses though, the popularity and excitement that goes along with these new methods also means we have to think hard about we protect those who choose to participate.
I measured my brain waves and task performance on caffeine- here’s what I found by John Fawkes. John was interested in how much caffeine he should be ingesting to help with his mental and physical performance. In this post he details some of what did, how he tested himself, and what he learned about how caffeine, and how much of it, affects different aspects of his life.
The Quantified Self & Diabetes by Tom Higham. Tom was diagnosed with diabetes in the late 80s. In this short post he details some of the different apps and tools he uses to “get my HbA1c down to the best levels it’s ever been.”
2014: A Year in New Music by Eric Boam. I had the pleasure of meeting Eric recently in Austin and was blown away by his ongoing music tracking project. I’m excited to see this new report and learn a bit more about what he’s discovered.
Apple Watch Heart Rate Comparison by Brad Larson. Brad used a simple script to export the heart rate values from his Apple Watch and compare it to two different heart rate measurement devices. Above is a comparison with the Mio Alpha, and he also compared is to a more traditional chest strap and found the readings to be “nearly identical.”
From the Forum
This week on QuantifiedSelf.com
Enjoy this week’s list!
The inside story of how Apple’s new medical research platform was born by Daneila Hernandez. I know we’ve been talking a lot about ResearchKit lately, but I had to add this fantastic piece on Stephen Friend’s journey that lead him to help bring it out of Apple’s lab and onto our iPhones. Of particular interest was this sentence from a FOIA request on Apple’s meeting with the FDA in 2013:
“Apple sees mobile technology platforms as an opportunity for people to learn more about themselves. “
Your Data Is Not Your Life Story by Michael Humphrey. An interesting take on the influence of machines and algorithms on our ability to understand and tell the stories of our lives.
Data Privacy in a Wearable World by Gawain Morrison. Gawain lists five steps for companies to consider as they beocome the gatekeepers of our personal data. My favorite: “Set up an ethical body”
DJ Patil Talks Nerd to Us by Andrew Flowers. You may know DJ as the gentleman who coined the term “data scientist” or from his groundbreaking work at LinkedIn, or maybe even his new position as the deputy chief technology officer for data policy and chief data scientist at the White House. Regardless, this interview sheds some light on his new role and how he thinks about the power of data at the national level.
Wireless Sensors Help Scientists Map Staph Spread Inside Hospital by Scott Hensley. A great piece on a new research article the described a new digital epidemiology method used to track individuals and infection in a hospital. One can’t help but wonder about the future of this type of system for understanding healthcare interactions now that we have low-cost iBeacon, NFC, and RF technology embedded into our phones.
Sensored City by Creative Commons. Together with the Robert Wood Johnson Foundation and the City of Louisville, CC Science is creating an open-source project to map and visualize environmental data. So great to see this work getting out there.
Reflections on my ongoing diet and fitness project by Shannon Conners. Again Shannon wows us with her beautiful and thoughtful explanation on how tracking and visualizing her data has set her on a path to a healthy weight.
“I have now collected enough free-living data in my own n=1 study to quantify what works for me to lose weight and maintain in a healthy range for me — an understanding that largely eluded me up to this point in my life. Not surprisingly, I have converged on the same deficit strategy commonly employed in weight loss studies that treat people like caged rats, closely quantifying their intake and activity to prove that negative calorie balance is the critical factor that causes weight loss. I’m truly grateful that I didn’t need to live in a cage to learn what I have over the past few years. In many ways, learning what I have from my data has helped set me free.”
Tracking Joy at Work by Joe Nelson. Joe and his coworkers use Slack to communicate at work. He was wondering why sometimes things just weren’t working right so he created a tool to randomly ask himself and his coworkers how he they feel. Results are then displayed anonymously on a dashboard. So cool.
Dear Data by Giorgia Lupi and Stefanie Posavec. Two friends track one topic each week and send each other postcards with hand-drawn visualizations based on the data. Absolutely beautiful work.
Air Transformed By Stafanie Posavec with Miriam Quick. Two wearable data objects based on open air quality data: Touching Air (a necklace) and Seeing Air (glasses).
Laurie Frick – American Canvas. A great interview with our friend and data artist, Laurie Frick. Make sure to watch through to the end.
It’s Not Just the Watch: Apple Also Helping Cancer Patients
Americans Believe Personal Medical Data Should Be Openly Shared with Their Health Care Providers
What should we do about re-identification? A precautionary approach to big data privacy
Apple’s announcement of ResearchKit is strong evidence that Quantified Self practices are emerging as a major influence on medical research and other forms of knowledge making.
Apple talked about how their new effort focused on opening up health research is designed to combat five main current issues:
- Limited Participation
- Small sample sizes limit our understanding of diseases
- Reliance on subjective data
- Infrequent data provide only snapshots through time
- One-way communication from researcher to participant (and only at the end of the study, if at all)
Furthermore, the design of ResearchKit allows the participant to decide how data is shared. Apple will not see the data. Participants are allowed to be involved in the data collection in real-time, using the data they’re collecting to understand and inform their own health improvement plans.
In light of today’s announcement we wanted to highlight some of our favorite and most powerful examples of taking the research process into one’s own hands, making their own knowledge through thoughtful data collection and reflection. We invite you watch what’s possible now, and imagine with us what could be accomplished tomorrow.
Last year we gather a fantastic group of researchers, toolmakers, and science leadership at the 2014 Quantified Self Public Health Symposium to discuss how personal data can impact personal and public health. That meeting culminated in a great report that touches on many of the aspects discussed today regarding ResearchKit. We invite you to download, read, and share that report. For a more nuanced look into how ResearchKit may impact the research community, we’re highlighting four great talks from the the meeting.
Susannah Fox shares research from the Pew Internet and Life Project and describes the challenges ahead for promoting self-tracking.
Margaret McKenna explores the issues, challenges, and ideas large scale self-tracking applications have in mind when they consider working with the research community.
Jason Bobe talks about the lessons learned from involving research participants in the data ownership and discovery process.
Doug Kanter describes what he’s learned from tracking and visualizing his diabetes data.
If you’re interested in how ResearchKit will be affecting self-tracking, personal data, and access to information, research and knowledge making, then stay tuned to our Access Channel here on QuantifiedSelf.com and on Medium.
We are sure to have many great talks and sessions that focus on ResearchKit at our QS15 Conference and Actrivate Exposition. We invite you to join us.