Tag Archives: healthcare

Quantifying Family Caregiving

Today’s post comes to us from our longtime friends and collaborators, Rajiv Mehta and Dawn Nafus. Read below to find out about an exciting new project they’re starting and a great Breakout Discussion they have planned for our QS15 Conference

What would it look like to take a “QS approach” to a major social and public health issue, like family caregiving? Caregiving has been the topic of a large array of survey studies, ethnographic studies, etc., but what might it mean to take a close look at the realities of caregiving activities through the first person lens that self-tracking affords?

We have been curious about this issue for a little while now, both as self-trackers curious about what it might be like to quantify the care work we ourselves do, and as researchers interested in care (Mehta) and self-tracking methods (Nafus) more broadly. We hope we can entice you to explore this topic with us in a variety of ways.  The two ways on top of our minds currently are the Breakout Session at QS15, and the Atlas of Caregiving Pilot project.

Breakout Session at QS15

Caregiving has been present as a theme from the beginning at QS. The first conference had a standing-room-only breakout session on tracking for chronic illnesses. At the third conference Yasmin Lucero gave an amazing talk about tracking her baby. In Amsterdam last year, another breakout focused on the human issues around family tracking. In June in San Francisco we want to dive deeper into how to track caregiving activities and the social implications of such tracking.

In this session, we’d like to think broadly about what counts as “care.” So many of us do not think about ourselves as “caregivers” and yet do a whole heck of a lot of it, some more short term than others.  We are curious about how care work affects your self-tracking practice. Does it make sense for you to track care activities explicitly, or does it make sense to track all the other things that are not about care for others, so that you can better care for yourself too?

We are also interested in the social ramifications of making these burdens explicit. Will your siblings be more supportive or empathetic if they really understood how much you’re putting into taking care of your mother? Will your mother feel even more guilty about all the trouble she’s causing you if she saw graphs of your troubles? In many kinds of self-tracking data, it is not just you implicated, though you might only do it for yourself. What are some good ways of negotiating the minefields data can sometimes open up?

Atlas of Caregiving Pilot

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We’re not just talking … we’re doing! The “Atlas of Caregiving Pilot” project, supported by a grant from long-time friends of QS, the Robert Wood Johnson Foundation, will enable us to explore this further with our researcher hats on. Our interest is in leveraging QS tools, methods and mindsets. We are less interested in allowing traditional healthcare and academic experts to frame what should and should not be of interest, and more concerned with ensuring caregivers themselves have the opportunity to say what is and is not important about their experiences. Ultimately, these are their stories, not ours, and the pilot is exploring ways that we can help people reflect on, and tell, their stories through QS-style numbers. We are also exploring what new insights are possible by leveraging self-tracking technologies, especially what can we learn about the activities and burdens of care. In practice, this means we’ll be combining qualitative and quantitative approaches; we’ll be encouraging self-reflection; we’ll be emphasizing the individuals (families) and not just the group (population); and we’ll emphasize learning from the uniqueness and variety of family situations. Read more about the project at Atlas of Caregiving.

We would love to hear from you, with suggestions on what to track, technologies to use, and war stories of what not to do. And if you want to to collaborate, contact Rajiv at rajiv@bhageera.com.

Join Rajiv, Dawn, and an amazing group of individuals at our QS15 Conference & Exposition. Register Now!

 

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What We Are Reading

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I’m filling in for Ernesto. I hope you enjoy this week’s list of articles and visualizations!

Articles

Don’t Relax: Uncomfortability Is The New Convenience by Adele Peters. This article looks at some products where a tolerable level of inconvenience is built into the design that prompts healthy actions or occasions for reflection.

Using Biometric Data to Make Simple Objects Come to Life by Liz Stinson. A whimsical project on display at Dublin Science Gallery’s Life Logging exhibition uses household objects to reflect and amplify the signals from your body.

The High Price of Precision Healthcare by Joseph Guinto. This is a fairly in-depth article on the relationship between drug and insurance companies and what happens when drug companies are given incentives for developing medicine for smaller populations. Not a breezy read by any means, but important for understanding the unintended consequences of changes made to the American healthcare system.

If Algorithms Know All, How Much Should Humans Help? by Steve Lohr. An exploration of a quandary that arises from machine learning methods. At what point do the automatic, self-learning processes mature to the point where any human intervention for correction is seen as injecting sullying “human bias.”

Show&Tell

Networking the Coffee Maker by David Taylor. A fun, little project using an ElectricImp micro-controller to track when the office coffee pot was brewing. The author helpfully includes his code.

Using 750words.com and self-quantification by Morris Villarroel. Morris has been using 750words.com for the past three months and reflects on his previous attempts to use the service consistently and how he uses it now.

Visualizations

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My brain on electricity: a 130 day tDCS experiment. This is a fascinating self-experiment where the author tries different tDCS montages while doing thirty minutes of dual n-back training.
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My Path to Sobriety by ERAU. From Reddit, the poster shares the data from an effort to reduce one’s alcohol consumption.

Access Links

Open Humans Aims to Be the Social Network for Science Volunteerism
Los Angeles Unveils Dashboard to Measure Sustainability Efforts
Who Owns Your Data?

From the Forum

Hardware Startup: Tracking Your Hydration
Five years of weight tracking
QS Research – 5 minute survey!
Zeo Sleep Monitor
Google Fit

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Quantified Self and the future of healthcare

A few months ago Quantified Self received an invitation from the Health Informatics Society of Australia to speak to their members at their annual conference hic2012. They wanted to hear a QS perspective on the future of healthcare.

I volunteered to go down under, to share some interesting self-tracking stories, and to speak about the possible impact of self-tracking on the world of healthcare. I drew analogies to the revolution caused by personal computing — the liberation of computing from the province of an elite few to a tool for the masses — to the revolution that might be caused by the advancement of personal science — a similar liberation of health science, and titled the talk “The Future of Healthcare: Innovation at the Edge”.

This was the teaser description of the keynote from the conference program:

Nearly 40 years ago in Silicon Valley, a group of pioneers leveraged technological advances and new ways of thinking to make computing personal. Computing went from being dismissed as a tool of bureaucratic control to being embraced as a symbol of individual expression and liberation. The creativity of millions of individuals was unleashed. Their experimentation has changed the world, often exceeding the innovation from traditional institutions. Today another generation is leveraging technological advances and new ways of thinking to make healthcare personal. They are developing and using tools, technologies, ideas and communities to enable and empower individuals to understand and manage their own health. They are encouraging and supporting crowd-sourced scientific advancements. What are these people doing? What tools are they using? What have they learnt? And how is all this activity going to impact traditional healthcare institutions, the nature of care services, and the pace of health technology innovation?

Click here to see the slides and my prepared remarks: http://www.slideshare.net/rajiv.mehta/hic2012-the-future-of-healthcare-innovation-at-the-edge

 

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