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What We Are Reading

Enjoy this week’s list!

Articles
Flipping Primary Health Care: A Personal Story by Kedar S. Mate and Gilbert Salinas. We’re leading off this week with a fascinating case study that describes what happened when one patient, Gilbert Salinas, “flipped the clinic.” After deciding to accept fellowship that would move him from California to Cambridge, MA he worked with his care team to take control of many of the tasks typically performed in the clinic.

Most importantly, I feel happier and healthier, and I am amazed that I have been able to accomplish my goal of being healthy during this year away from my providers. It has transformed my sense of what is possible and has encouraged me to take further ownership of my health.

A Case for Autonomy & The End of Participatory Medicine by Hugo Campos. I’m constantly in awe of our friend and QS community member, Hugo Campos. As a leader in the fight for access to personal data (see this great NPR piece from 2012) he’s been an inspiration for our own ongoing Access Matters work. In this post, Hugo makes the case for focusing less of patient participation in the medical system, and re-orienting towards improving patient autonomy and self-determination.

Health Data Outside the Doctor’s Office by Jon White, Karen DeSalvo, and Michael Painter. In this short post, the smart folks at RWJF introduce the new JASON group report, Data for Individual Health, which

“[…] lays out recommendations for an infrastructure that could not only achieve interoperability among electronic health records (EHRs), but could also integrate data from all walks of life—including data from personal health devices, patient collaborative networks, social media, environmental and demographic data and genomic and other “omics” data.”

A Systematic Review of Barriers to Data Sharing in Public Health by Willem van Panhuis and colleagues. In this review article, the authors outline twenty specific barriers standing in the way of sharing data that could improve global public health programs. They include numerous examples of the technical, motivational, economic, political, legal, and ethical barriers that prevent more sharing across public health systems.

#WeAreNotWaiting at the Fall 2014 D-Data ExChange: The Stars Are Aligning by Mike H. QS Labs was unfortunately unable to attend the Fall 2014 D-Data ExChange, but were excited to read this great summary of the event.

Show&Tell
The Quantified Self and Humanities Best Friend by Kevin P. Kevin found out that he could track his dog, Lilo, along with himself when he went for walks and runs. In this short post he outlines his process, and the barriers he ran into, for collecting data from his different devices to show his progress on a recent 5k walk.

Follow-up study: on the working time budget of a university teacher. 45 years self-observation pdf hereby Dimitar Todorovsky. Dimitar is a recently retired researcher and professor of Chemistry and Pharmacy at the University of Sofia in Bulgaria. In this journal article he outlines his findings from tracking his time every day over his 45-year career. Most striking to me is that he averaged 10hr of work per calendar day for the entire 45-year period.

Visualizations
HR_proposal
Heart Rate (bpm) during marriage proposal by reddit user sesipikai. Going to Rome to surprise your fiancé to be? Why not record your excitement and nervousness by wearing a heart rate chest strap!


To Big to Fail by Nicholas Felton. In this great video presentation Nicholas Felton describes the process behind building the latest in his series of Annual Reports. You can also check out the full 2013 Annual Report here.

From the Forum
Counterintuitive HRV Measurements
Active, Athletic Folks With Asthma Tracking Their Performance
Mobile Health and Fitness Apps Privacy Study
OP Innovations Sensors
Hexoskin
Timer/logger/tracker–what kind of gadget am I looking for?

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What We Are Reading

We hope you enjoy this week’s list!

Articles
Big Data in the 1800s in surgical science: A social history of early large data set development in urologic surgery in Paris and Glasgow by Dennis J Mazur. An amazing and profoundly interesting research paper tracing the use of “large numbers” in medical science. Who knew that is all began with bladder stones!

Civil Rights, Big Data, and our Algorithmic Future by Aaron Rieke, David Robinson and Harlan Yu. A very thorough and thoughtful report on the role of data in civil and social rights issues. The report focuses on four areas: Financial Inclusion, Jobs, Criminal Justice, and Government Data Collection and Use.

Caution in the Age of the Quantified Self by J. Travis Smith. If you’ve been following the story of self-tracking, data privacy, and data sharing this article won’t be all that surprising. Still, I can’t help but read with fascination the reiteration of tracking fears, primarily a fear of higher insurance premiums.

Patient Access And Control: The Future Of Chronic Disease Management? by Dr. Kaveh Safavi. This article is focused on providing and improving access and control of medical records for patients, but it’s only a small mental leap to take the arguments here and apply them all our personal data. (Editors note: If you haven’t already, we invite you to take some time and read our report: Access Matters.)

Perspectives of Patients with Type 1 or Insulin-Treated Type 2 Diabetes on Self-Monitoring of Blood Glucose: A Qualitative Study by Johanna Hortensius, Marijke Kars, and Willem Wierenga, et al. Whether or not you have experience with diabetes you should spend some time reading about first hand experiences with self-monitoring. Enlightening and powerful insights within.

Show&Tell
Building a Sleep Tracker for Your Dog Using Tessel and Twilio by Ricky Robinett. Okay, maybe not strictly a show&tell here, but this was too fun not to share. Please, if you try this report back to us!

Digging Into my Diet and Fitness Data with JMP by Shannon Conners, PhD. Shannon is a software development manager at JMP, a statical software company. In this post she describes her struggle with her weight and her experience with using a BodyMedia Fit to track her activity and diet for four years. Make sure to take some time to check out her amazing poster linked below!

Visualizations
The following two visualizations are part of Shannon Conners’ excellent poster detailing her analysis of data derived from almost four years of tracking (December 2010 through July 2014). The poster is just excellent and these two visualizations do not do it justice. Take some time to explore it in detail!

SC_calorieweight

SC_sleep

Tracking Energy use at home by reddit user mackstann.

EnergyApp

“The colors on the calendar represent the weather, and the circles represent how much power was used that day. The three upper charts are real-time power usage charts, over three different time spans. I use a Raspberry Pi and an infrared sensor that is taped onto my electric meter. The code is on github but it’s not quite up to date (I work on it in bits and pieces as time permits I have kids).”

From the Forum
Help With Livestrong Data Export
Need Help Deciding Which Device
New to Fitness Tracking

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