Tag Archives: participant centered research

What We Are Reading

Ernesto is in sunny Austin for SXSW, so I’m filling in to gather this week’s articles and links for your reading pleasure.

Articles

Apple ResearchKit concerns, potential, analysis by MobiHealthNews. ResearchKit was a big surprise coming out of Apple’s Special Event this week. It was quite difficult to select just one representative article about the ensuing conversation, so this round-up serves nicely.

#WhatIfResearchKit: What if Research Kit actually, truly, worked… by Christopher Snider. Okay, I failed to keep to one article on ResearchKit. This post chronicles a series of Twitter conversations on the question: if ResearchKit does work, what are the possibilities?

The Electric Mood-Control Acid Test by Kevin Bullis. Thync is a sort of evolved version of a transcranial direct current stimulation (TDCS) device. A technology with a lot of potential and controversy, this article explores why the brain-enhancing effects of the TDCS only work for some people. By the way, if you are a fan of Philip K. Dick, Thync may remind you of the mood organ that was in Do Androids Dream of Electric Sheep?

Automated Learning by Nichole Dobo. Some school classrooms are experimenting with ”Blended learning”, a method of combining classroom teachers and computer-assisted lessons. A detail that stuck with me is the description of three large displays that show where each student is supposed to go that day, based on the results of the previous day’s lesson.

The Mouse Trap: Can One Lab Animal Cure Every Disease? by Daniel Engber. An in-depth how science’s predominant use of lab mice could be limiting our knowledge of disease. Of relevance to self-trackers because many models of optimal health are in part based on mouse studies.

Show&Tell

2014-Average-Sleep-Stages-by-Day-of-Week

Analyzing a Year of My Sleep Tracking Data by Bob Troia. This is a superb exploration of Bob’s sleep data from 2014 as collected by his Basis watch.

report_1

Notes on 416 Days of Treadmill Desk Usage by Neal Stephenson. The author of Snow Crash and The Cryptonomicon is a long time user of a treadmill desk, but when he began having pain in his left leg, he had to reevaluate how he used his favored tool.

Visualizations

 

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Qualities of #QuantifiedSelf by Christina Lidwin. A fascinating analysis of the #quantifiedself hashtag.

Access Links
First medical apps built with Apple’s ResearchKit won’t share data for commercial gain by Fred O’Connor
Talking Next-Gen Diabetes Tools with Dexcom Leaders by Mike Hoskins

From the Forum
Mood Tracking Methods?
Howto track laptop uptime
CCD or CCR conversion tools?
What gets measured, gets managed – Quantified Self in the workplace
Best ECG/EKG Tool for Exercise
Best iOS app to track water/coffee/alcohol intake?

This Week on QuantifiedSelf.com
QS15 Sponsor Highlight: RescueTime
Quantified Self and Apple’s ResearchKit
Better by Default: An Access Conversation with John Wilbanks
QS15 Conference Preview: Jamie Williams on Tracking My Days
Quantified Self Styles

Lastly, I’ll leave you with a lovely little comic with a message that many self-trackers can relate to.

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The Secret by Grant Snider

 

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QS | Public Health Symposium: Jason Bobe on Participant Centered Research

As part of the Quantified Self Public Health Symposium, we invited a variety of individuals from the research and academic community. These included visionaries and new investigators in public health, human-computer interaction, and medicine. One of these was Jason Bobe, the Executive Director of the Personal Genome Project. When we think of the intersection of self-tracking and health, it’s harder to find something more definitive and personal than one’s own genetic code. The Personal Genome Project has operated since 2005 as a large scale research project that “bring together genomic, environmental and human trait data.”

We asked Jason to talk about his experience leading a remarkably different research agenda than what is commonly observed in health and medical research. From the outset, the design of the Personal Genome Project was intended to fully involve and respect the autonomy, skills, and knowledge of their participants. This is manifested most clearly one of their defining characteristics, that each participant receives a full copy of their genomic data upon participation. It may be surprising to learn that this is an anomaly in most, if not all, health research. As Jason noted at the symposium, we live in an investigator-centered research environment where participants are called on to give up their data for the greater good. In Jason’s talk below, these truths are exposed, as well as a few example and insights related to how the research community can move towards a more participant-centered design as they begin to address large amounts of personal self-tracking data being gathered around the world.

I found myself returning to this talk recently when the NIH released a new Genomic Data Sharing Policy that will be applied to all NIH-funded research proposals that generate genomic data. I spent the day attempting to read through some of the policy documents and was struck by the lack of mention of participant access to research data. After digging a bit I found the only mention was in the “NIH Points to Consider for IRBs and Institutions“:

[...] the return of individual research results to participants from secondary GWAS is expected to be a rare occurrence. Nevertheless, as in all research, the return of individual research results to participants must be carefully considered because the information can have a psychological impact (e.g., stress and anxiety) and implications for the participant’s health and well-being.

It will not be surprise to learn that the Personal Genome Project submitted public comments during the the comment period. Among these comments was a recommendation to require “researchers to give these participants access to their personal data that is shared with other researchers.” Unfortunately, this recommendation appears not to have been implemented. As Jason mentioned, we still have a long way to go.

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