Lifelong Analytics: Equity, Data Viz & Precision Medicine

About the Author: Emily Chu is a Data Visualization Developer and Motion Designer currently focusing on data visualization engineering, machine learning and interactivity. Her background spans program management, research, business, design and technology. (MS Data Visualization, Parsons School of Design) | Website: 3milychu.github.io

 

The Spotlight on Healthcare Data

The tidal wave of new healthcare technologies is dizzying. Telehealth, artificial intelligence, AR/VR, 3D printing and patient monitoring promise that the future of medicine will be more efficient, affordable, secure and personal. Most advancements spotlight healthcare data as the foundation: we are capturing it, sharing it, making use of it and disseminating it in ways we’ve never done before.

Healthcare Data’s Rising Value and Impending Inequity

Consider this year’s Economic Forum’s meeting in Davos, where key industry leaders stated that using global healthcare data available to them, Machine Learning will be able to uniquely pinpoint the most effective treatment for an individual. At the current rate of data representation, however, health systems will be much poorer at offering efficient and highly accurate treatment for individuals that are not of European or East-Asian descent.

Meanwhile, the momentum behind capturing healthcare information is the heightening awareness of its value and security. Companies like Nebula Genomics, for instance, are offering to sequence your genome and secure it on a blockchain, wherein you will have control over the transfer of this packet of information and it will only go where you send it. In a consumer-driven healthcare world, what types of customers will have the privilege to understand what this even means?

What we can do with healthcare data can level the playing field.

We can make it secure and affordable for everyone, regardless of condition, race, or socioeconomic background, to receive the most effective treatment available. Looking at the typical health system infrastructure, where do we start?

Enter Electronic Health Records

Electronic Health Records or Electronic Medical Record (EHR/EMRs) are now a standard method of healthcare data storage and exchange. Patients are able to view an electronic copy of their medical records and physicians are able to share test results with patients. It can be thought of as the start of healthcare data consumerization. It is perhaps the perfect training ground to help the most vulnerable populations understand –

  1. how valuable their healthcare data is and
  2. how to harness it to improve their health and receive the most affordable, effective treatments in the future.

Since its inception, we now know that approximately half of the U.S. population encounter difficulties in comprehending and utilizing their health information, ushering in the need for a “visual vocabulary of electronic medical information to improve health literacy”. In 2014, a study revealed that 63.9% of of EMR survey respondents complained that note-writing took longer, and as of 2017, 94% of physicians in a survey were overwhelmed by what they believe to be “useless data”.

Visualizing Healthcare Data for the Most Vulnerable: From Collection and Adoption to Accuracy and Feedback

One important step is to get the most vulnerable populations – lower literacy individuals, patients with chronic or debilitating conditions, the elderly – to find a real use in capturing data and finding an enjoyment in doing so. The following demonstrates an example of how this updated electronic health record might function.

From Integrated Treatment Adherence to Responsive Feedback to Lifelong Analytics

In Visual 1.0: Simple Gamification of Healthcare Activities (below), for example, the patient is first shown how medications and healthcare tasks such as “take your blood pressure” can be gamified in a simple user experience to encourage data collection.  

Visual 1.1: Progress Over Time (below) shows how collecting vitals and treatment plan adherence might then be synced and displayed in the record shared with physicians. 

In Visual 1.2 Breakout view of healthcare activity or Biometric Marker (below), consider that the main dashboard view can be broken down and analyzed easily by physicians.  

Visual 1.3 Condensed Progress Summary and Feedback for the Patient (below) then illustrates closing the feedback and health comprehension gap that is often left open after treatment, by condensing the analytics into a simple progress view over time. Recommendations for the medical aspect (i.e. treatment plans) or maintenance behaviors (i.e. exercise) are adaptive. For example, at predetermined check-in intervals or when tracking metrics trigger a certain threshold, the treatment plan adapts based on level of adherence or other care plans that were implemented. Finally, consider that patients should be able to view future states assigned to them by predictive analytics (not pictured). In this scenario, what I would call Lifelong Analytics, individuals securely own all their healthcare information and are able to compare how predictive analytic models place them in the future.

By using the electronic health record as a catalyst to drive data collection and adoption among the most vulnerable, we are securing a pool of representative information for groups that may otherwise be left behind in the race for precise treatment at near-to-no cost. Along the way, through digestible habits and user-friendly actions, patients will be exposed to the power behind documenting their healthcare information. Once individuals are empowered with their data and what it really means, we can imagine a future where people are quick to stand up for the ownership of their data – and ensure that advancements that are made considering their footprint.

Takeaways

The poor, the elderly, the sick and the underrepresented have much to offer to the future of medical practice. They offer interesting challenges and high payoffs in cost efficiencies. When we consider a future where data will be dynamically classified and trends predicted, it is important to concentrate adoption among these groups. Some methods we discussed in this article:

Making treatment plans easy to track and adaptable

Treatment plans should be easy to track. Monitoring can be easily integrated into our routines, or in the future – automatically reported back to us. Providers should be able to understand what adaptive measures need to be taken should we miss a dose, or life interferes with our rehabilitation plan.

Making our medical history secure, transparent and shareable

Technologies currently exist to ensure our healthcare information belongs to us, and we have ownership over where it is transferred virtually. Visualizing healthcare information using a visual vocabulary that demystifies our health history, and shared among all providers in our care network can strengthen this transparency.

From responsive feedback to lifelong analytics

Consider a future where individuals with secure ownership of their healthcare data can access not only responsive feedback from their care providers, but see how their lifelong analytics are affected with each stint of perfect treatment plan adherence or alternative care plan. In other words, imagine what predictive analytics has to say about us is eventually comprehensible and accessible to us as individuals.

By visualizing and making healthcare information for the most vulnerable readily accessible and comprehensible, we make it possible to access the most difficult treatments responsively and potentially risky treatments with transparency. In the end, this can teach an entire population how to better develop an infrastructure that prepares and cares for us when we too age, get sick or fall into disadvantaged circumstances.

Organic Software: An Interview with Seth Price

Dr. Anne Luther spoke with Seth Price in an email interview about http://organic.software, an online database that the artist released anonymously in 2015. It contains profiles of over 4000 art collectors that the artist accumulated alongside images of their digital portraits, street views of their private address, corporate and private affiliations and political donations, educational bio and information about their net worth. The website displays a certain performative element through its visual language, anonymity and contextualization into jargon and vocabulary of software development and algorithmic analysis linking entities of an ecosystem of actors in the artworld and their political and economic contexts. The website was discussed in multiple published articles (Texte zur Kunst, Vice, Metropolis M) and was part of an exhibition at 365 Mission Rd in LA.

Seth Price is a multi-disciplinary artist who works in a wide range of media. His work has been exhibited internationally and was included in the 2002 and 2008 Whitney Biennials,  the Venice Biennale in 2011 and dOCUMENTA (13) in 2012. His video works have been screened at the Rotterdam Film Festival; Tate Britain, London; Institute of Contemporary Art, London; The Museum of Modern Art, New York; Eyebeam, New York; and Biennale de l’Image en Mouvement, Saint-Gervais, Geneva and in his latest exhibition at the Stedelijk Museum, among others. His work is included in the collections of the Kunsthaus Zürich, Zürich; the Museum of Modern Art, New York; the Whitney Museum of American Art, New York. (Seth Price biography, studio website).

Anne Luther: How did your interest to work with programmers evolve in your practice?

Seth Price: I got into in coding when i was in elementary school. There was a state-funded pilot program with donated Apple IIe computers, and over several years we learned rough concepts of programming, using Terrapin Logo. Later, in sixth and seventh grade, I programmed with MSBasic and tried to teach myself C, which failed. My interest was in making video games. The interactive gaming sequence in my video Industrial Synth uses the actual MacPaint files I made for one of these games in 1986. I took a class in C+ in college. But my brain is not built for math, or numbers, or that kind of abstract quantitative thinking! I can’t conceive of a calendar, or keep track of dates, or do simple computations. So I sucked at coding. For this site I hooked up with some people who knew what they were doing.

AL: You talked in an article in Texte zur Kunst about the project becoming a work of art a year and a half after you released the website anonymously. That’s when you put your name into the FAQ section, a signature of sorts. Would you ever release the algorithm or code that was developed for the work?

SP: Once, we released a Continuous Project issue that was the content of the HTML from our website. In this case, the piece is really about the site as a kind of experience (though there definitely was also a performative element in staging it as an anonymously created object.) I wouldn’t want to focus on the code.

AL: Could you describe why you chose to build a website that shows the data in its current form? I am interested in the choices of distribution, organization and access of the data. Would you release the data as open data or would you allow other individuals to scrape your website or work with an API of sorts?

SP: I feel like I walked away from the project. It’s an abandoned construction site. I’d be hesitant to get involved again, because I feel distant from it now. But it was definitely made to be a standalone site, a place, a kind of location, with a visual language and a feeling. That was as important as the data. This was not just about publicizing the data, or I wouldn’t have made it anonymous. Anonymity really works against any sort of socially conscious idea.

AL: You mentioned on the website that you are working on further development of the tool and other data sets. Is the work a ‘work in progress’ or in other words do you use the information in future works or are you developing any other collaborations that are data-driven/informed by large scale digital data collection?

SP: That whole anonymous ‘About’ page was fictional — the bad grammar, everything. I was never planning to develop the project any further, that was just part of the fiction of a North Korean/Iranian/Russian hacker working on some insane software project.

AL:  Was this work made with an ideal ‘use case’ in mind?

SP: I didn’t think about that. It was an experiment, an opening up of possibility. I now know that the ideal case, realistically speaking, is probably people who work at galleries or auction houses using the comments section to trade anecdotes about collectors.

AL: Organic Software links individuals, to their context of wealth and their affiliations in the art world. Do you consider this work as a form of institutional critique? Two works come to mind that also speak about art collectors and their wealth context and that are shown in galleries and are part of museums collections that they critique: Hans Haacke’s Shapolsky Et Al. Manhattan Real Estate Holdings, A real-time social system, as of May 1, 1971 and Andrea Fraser’s ACTIONS! Countdown from 2013, a slideshow that shows collectors, their political involvement and wealth context and their ‘role’ in the art world.

SP: I did talk to Andrea Fraser while I was working on it, and she told me about the project she was developing, though I don’t know if it had a form yet. She was speaking of it as a book in development, which still sounds great. We were going to compare notes and hook up, but it never happened. I don’t think of this as institutional critique. I tried to design the site in a specific way, so that it wouldn’t read as a social justice project, or internet art, or institutional critique. It was supposed to be blank, odd, and unplaceable. That was as important as the content: make a website that has actual useful information, but the framing is so weird and unplaceable that it doesn’t make sense.  So it’s context art, if you want to place it, but all of my work is a kind of context art, in that sense. It would be similar to the way I would make a painting or a sculpture: explore a language and existing situation, yielding a feeling, and a kind of possibility, and an unknowing, or a lack of sense. I don’t make art with a motivation or a concept or an idea in mind, and this was similar.

AL: A space outside or inside the art world that allows a critical voice towards the financial context of institutions and galleries is hard to define and carve in the current complexity of contemporary art. You talked about a sort of hypocrisy describing the project. Can you talk about this seemingly contradicting motivation for building and releasing the dataset as a work of art?

SP: The hypocrisy would come from someone who thought I am condemning a system, or individuals, while benefiting from it, and I recognize that’s a risk in making something like this. But I don’t think of myself as a critical voice, in doing this. This is more like a self portrait.

AL:  Can you talk about your motivation to build this website – was it motivated by changing the art world’s embeddedness in a current political, economic context or rather to make this embeddedness known in a more tangible and large scale manner?

SP: No, it was personal. Just exploring a feeling. I figure I could never change much in the way you’re talking.

AL: Has your understanding of the information that we find on the website changed in the past year (first year of the Trump administration)?

SP: I don’t think so.

AL: Is there an ideal scenario for the use of the tool for you or was there a certain urgency that informed the conceptualization and production of the work?

SP: You know, there was an urgency, actually, I forgot about this. The urgency was because in 2013 or ‘14 I learned that one of my galleries had sold a work of mine to an Israeli state museum, which I would not have allowed if I’d been asked. But then you get all sorts of questions: maybe museums and art represent the best in an otherwise objectionable state, or at least the possibility of dialogue and expansion and awareness. And then there’s the fact that any fortune is tied to objectionable behavior; many collectors have made their monies in “impure” ways. So I thought it might be good to have a place where one could at least do preliminary research. That was the impetus to start the project. Again, it was personal.

AL: How was the tool perceived in your group of peers? Did anybody use the tool as a frame of reference for changing their access to art works or affiliations to museums?

SP: I have no idea. I think it has been most helpful as a kind of basic ‘Face Book’ where people can see what a certain collector looks like, or go through the Faces page and say, ‘Oh, there’s that guy who was at dinner the other night, let’s find out who he is.’ Social reconnaissance, really. But that’s cool.

Data Stories: What Space Oddity Looks Like

In the land of popular music, there has been little scarcity of fashion experiments. And David Bowie’s visual legacy definitely takes up a large piece. But, what does a David Bowie song look like? Valentina D’Efilippo and Miriam Quick answer this question in their remarkable project.

Outfit by Kansai Yamamoto                                Photo by Masayoshi Sukita 1973
Aladdin Sane Cover

OddityViz – a data tribute to David Bowie is a visualization project that gives ‘form to what we hear, imagine and feel while listening to’ Bowie’s hit number Space Oddity. The project which is a combination of ten engraved records, large-scale prints and projections is deconstructed from data extracted from the song – narrative, texture, rhythm, melody, harmony, lyrics, structure, lyrics, trip and emotion. The inquiries that went into the making of each of these records are even more interesting.

When making this, the ninth disc in the Oddityviz series, we asked ourselves: how can we tell the story of Major Tom so it could be understood by an alien?

The project took inspiration from a variety of references from popular culture, while the colour palette naturally recalls the darkness of space (black) and the stars (white). One can also see a reference to the Voyager Golden Records in the engraved dataviz format.

The final disc of the series illustrates the central themes of the song: the destruction of its main character, the bittersweet nature of triumph, the smallness of humanity in a vast, extended universe.

In her article on Muzli, D’Efilippo breaks down the process of creating this piece, comparing the ‘system’ of data visualization to music – one that is largely subjective and that which becomes more ‘meaningful and legible’ as we learn how to read it.

In my opinion, dataviz is more than a tool to render numbers, it’s a way to make sense of any experience and communicate the underpinning stories.

Read the full article here.

Evolution of the Data Artist

Defining Data Art is tricky. And for good reason. The mediascape that breathes around us is a terrain that shifts, distorts and transforms before it can be drawn. In such a space, defining can only be limiting. Jacoba Urist, in his comprehensive article in The Atlantic in 2015 explored the multifarious ways of the Data Artist.

Art is as much a product of the technologies available to artists as it is of the sociopolitical time it was made in, and the current world is no exception. A growing community of “data artists” is creating conceptual works using information collected by mobile apps, GPS trackers, scientists, and more.

                                                      Liberté (1963) – Joaquim Rodrigo 

In a series called Moodjam, (Laurie) Frick took thousands of Italian laminate countertop samples from a recycling center and created a series of canvases and billboard-sized murals based on her temperament … Frick is adamant that her work is about more than simply visualizing information—that it serves as a metaphor for human experience, and thus belongs firmly in the art world.

As Urist deftly puts it – working with (this) data isn’t just a matter of reducing human beings to numbers, but also of achieving greater awareness of complex matters in a modern world. Fast forward to two years later, Cynthia Andrews speaks about the role of Context in Data Art.

If you look at neural networks created by scientists with a creative eye you might see it as art. If you take it out of context, it could be a subway map or a series of rivers. It could be anything. It’s the non-creative context in which things are placed that makes people think they aren’t be considered art.

Andrews expands on a specific genre of Data Art that Urist mentions –

Artists influenced by self-tracking.

‘Waiting for Earthquakes’ by Moon Ribas. She has a sensor embedded into her skin that, using seismic data, vibrates every time there is an earthquake in the world, from anywhere, any magnitude. ‘Waiting for Earthquakes’ is a performance piece in which she literally just stands on stage and waits for an earthquake to happen and then interprets the feeling that she gets into movement. I don’t know if she considers it data art, but I do.

And then, there are artists like Shelita Burke, a pop musician who decided to use Blockchain and Music Metadata to not only get paid on time – but to organize a centralized system for distributing royalties across the production spectrum to the producers and writers involved.

Burke thinks it also has something to do with her use of data to her advantage, like when she determined  that 90 days was the perfect time to release new music in order to keep fans engaged.

“I really believe that every artist needs to understand data” Burke says.

Internet Feudalism v/s Net Neutrality – Who wins?

A few weeks ago, the FCC under the chairmanship of Ajit Pai voted to repeal net neutrality, a topic that soared in Google’s search trends this past December. The interest in the subject when ranked by states (sub-regions) is also quite unexpected with Nebraska at the top, since then becoming the first red state to institute pro net neutrality legislation.

While much is being spoken on the subject including the recent legal resistance from several advocacy groups, the internet association and corporations like Amazon, Google and Netflix, the debate within the wider media continues to remain largely polarized, without taking into account the nuances and hidden realities of the current power structures in place within the world wide web.

Lana Polansky, in her article dives into ‘the emptiness of the myth of the internet as some great equalizer’ and what these feudalistic dynamics mean for independent artists, creators and small businesses even with the existing open internet.

large sections of the internet have been carved out and wholly controlled by major corporations and crowdsourcing and marketplace platforms. The virtual land is farmed for content, from which platform holders skim off profit in exchange for use of the platform.

It has always been difficult for people outside the more privileged classes to hack it as artists and intellectuals, but the break with tradition that the internet was originally believed to represent has now given way to a form of virtual feudalism.

Read the full article here.