How Patients Are Creating Medicine’s Future: From Citizen Science to Precision Medicine

On December 6th, 2016 the University of Minnesota’s Consortium on Law and Values in Health, Environment & the Life Sciences hosted a free and public lecture on the ways that the Internet and Big Data are causing transformations in science, medicine, and the creation and development of therapeutic techniques*.

The four panelists (Prof. Jason Bobe, MSc, Icahn Institute for Genomics & Multiscale Biology, Mount Sinai School of Medicine; Ernesto Ramirez, PhD, Director of Research & Development, Fitabase; Prof. Kingshuk Sinha, PhD, Carlson School of Management, University of Minnesota; Prof. Barbara Evans, PhD, JD, LLM, University of Houston Law Center) spoke for 15 minutes each, responded to questions, and the symposium ended with a full Q&A session with all the panelists.

All presentations were thought-provoking and highlighted new directions for consumer-driven and precision medicine. Yet I was troubled that none addressed the ways that resources (or should I say, a lack of resources) may affect whether an individual is able to participate in this realm, whether because of their finances, free time, Internet and/or smartphone (in)access, or an ability to code or develop software.

I asked the panelists this question (see the video below) at roughly one hour and forty-two minutes into the talk:

* Support for the Deinard Memorial Lecture Series on Law & Medicine comes from the Deinard family and the law firm of Stinson Leonard Street. This lecture series is co-sponsored by the University of Minnesota’s Consortium on Law and Values in Health, Environment & the Life Sciences; Center for Bioethics; and Joint Degree Program in Law, Science & Technology.

Health 2.0’s WinterTech Conference

Last week was JP Morgan’s 35th annual Healthcare Conference in San Francisco, CA. January 11th was also the one day Health 2.0 conference known as WinterTech, part of Health 2.0’s series of annual conferences, and one that focuses on trends and new directions for digital health investors.

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The conference agenda.

The day began at 7 am, with an invite-only event for investors and technological innovators to meet and collaborate, and continued throughout the day* with a series of panels, one-on-one interviews with noted figures in the industry, and companies demonstrating the efficacy of their products.

One recurring theme was that change is imminent in the healthcare industry generally, and the Health 2.0 industry in particular as a result of Donald Trump’s election and the likely appointment of Tom Price as head of the Department of Health and Human Services.

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We also discussed (and voted) upon the ways that the Affordable Care Act as well as Medicare are likely to experience drastic changes under this new administration. 

The unifying theme throughout the day amongst speakers, presentations, and panels was that when it comes to the most promising investments in the Health 2.0 industry, we ought to choose technologies that are designed with consumers and patients in mind, not those that are created for medical practitioners themselves. The emphasis was upon finding new ways of disrupting traditional healthcare models and industries that facilitate the ease of the user’s experience, not upholding the status quo.

*WinterTech’s full agenda may be accessed here.

$ex, $candals, and $tigmas

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This isn’t about Kanye West or Kim Kardashian. This is about mediated depictions of mental illness, whether medically diagnosed or speculatively made by magazine writers and armchair psychiatrists. This is about conflating mental illness with madness, violence, and danger, the perpetuation of age-old stigmas, and media sensationalism.

I had thought (or at least hoped) that we were moving past stigmatizing people who experience mental distress and/or illness. But all we have to do is take a look at this cover from In Touch Weekly to see that I was wrong. Very, very wrong.

The stigmatization of mental illness has serious, debilitating, and even life-threatening effects:

  • People of color, men, and those of lower socio-economic status tend not to seek mental health resources when needed;
  • Despite public campaigns seeking to de-stigmatize the use of mental health support by men, such as the National Institute of Mental Health’s “Real Men. Real Depression” campaign, which ran from 2003 to 2005, women continue to use mental health services more than men;
  • Research suggests that even if people of color and those with lower incomes do seek mental health services, the biases of practitioners themselves may present additional hurdles for them to be accepted as new patients.

The National Alliance on Mental Illness (NAMI) notes that approximately 1 in 5 adults in the U.S.—43.8 million, or 18.5%—experiences mental illness in a given year, and roughly 1 in 25 adults in the U.S.—10 million, or 4.2%—will experience serious mental illness in a year that interferes with, or limits, one’s life activities.

If mental illness is as common as we are led to believe, then why does the stigmatization continue?

Much like sex, stigma sells. It screams scandal. 

And In Touch is in the business of making money. The magazine’s actions are shameful, and have likely inflicted damage upon those who are in need of mental health services.

 

Forbes: Most Employers Paying For Doctor Telemedicine Visits

Nearly 60% of the nation’s large employers now provide medical coverage for telemedicine , offering workers access to video consultations with physicians via smartphone, tablet or desktop computer.

The number of such employers now covering telemedicine has jumped from about 30% last year as companies see an opportunity to save money and give quicker access to medical care, according to the Mercer National Survey of Employer-Sponsored Health Plans. The analysis, which comes amid the annual employer fall open enrollment period, draws from a sample of more than 2,500 companies with at least 10 employees.

The telemedicine consultation between physician and patient costs around $40 compared to an in-person office visit that can cost $125. Though coverage varies widely, Mercer data shows 75% of employers that offer telemedicine share the cost of the visit with their workers through a co-pay of generally around $25.”

Read more here.

Reflections on the Critical Data Studies Symposium & Future Directions for Critical Data Studies

I am so proud to have been a part of the first symposium on Critical Data Studies at the University of Minnesota, an interdisciplinary initiative that was made possible by the Institute for Advanced Study and Informatics Institute.

Thursday’s keynote by Dr. Ruha Benjamin was a fascinating look at the ways that science, technology, and medicine are political. Biotechnologies and genomic research, she argued, are designed with discriminatory frameworks and result in findings and technologies that perpetuate the marginalization and oppression of people along racial and gendered lines.

One of my favorite lines from the talk: Our biopolitical imaginary recalibrates existing social difference (e.g., race/ethnicity) as genomic difference.

Note: I will post a video of the presentation Dr. Benjamin gave when it is available, but for now you can watch her excellent TED talk From Park Bench to Lab Bench – What Kind of Future Are We Designing? below:

On Friday those of us who received the summer fellowships each gave a five-minute “lightning talk” that introduced our research projects. IAS recorded those presentations as well, and they can be viewed below:

06:25 Emma Bedor Hiland, Communications Studies
(En)coding Inclusiveness in Smartphone Applications for Mentally Disordered Users

12:32 Lars MacKenzie, Gender, Women, and Sexuality Studies
Accounting for Change: Big Data, Gender Transition and Financial Surveillance of Identity

18:13 Deniz Coral, Anthropology
Markets with Many Faces: The Role of Screens in the Financial Imagination

22:35 Katelin Krieg, English
Victorian Data Analysis and Visualization

27:52 Alexander Fink, Social Work
Locating Human Possibility and Aspirations in Social Service Mass Data Collection Systems

33:50 Madison Van Oort, Sociology
Well-Dressed Data: Workplace Surveillance in the World’s Top Retailers

39:35 Amelia Hassoun, Anthropology
Big Data, Big Futures: Imagining the Singaporean Smart Nation

45:14 Stephen Savignano, Anthropology
Interaction / Machination: Thinking Machines through Interactive Computation

49:40 Link Swanson, Philosophy
User interfaces and the epistemology of the new computational cognitive revolution

Following these lightning talks, pairs of fellowship recipients gave 10-minute, more-in-depth presentations on their research and findings to symposium attendees. Lars Mackenzie and I were a pair as our work shared the theme of In/Visbility, and we discussed our findings with faculty, graduate students, and University staff.

Toward the end of the symposium, everyone in attendance agreed upon the importance of continuing these conversations about the human in the data. I am hopeful that we can all continue to meet and discuss our work and activism.

In her closing remarks, Dr. Benjamin encouraged us to refuse to be relegated to the sidelines when it comes to science, technology, and big data practices. Do not become an addendum to the work that is already underway, she argued, demand a seat at the table during the beginning of these projects instead.  It was an extremely positive and inspiring experience, and one that the University staff, researchers, and students have likely been changed by.

Upcoming Keynote and Workshop on Critical Data Studies

It’s here! It’s finally (almost) here!

The University of Minnesota Informatics Institute, the Institute for Advanced Study, and the Minnesota Population Center are sponsoring two events this week that examine the intersections of informatics and the humanities. I am so excited to have been selected as one of this summer’s Critical Data Studies Fellows, and to present my work on mental healthcare smartphone applications on Friday.

Thursday, Sep 29, 3:30-5:00, Northrop, Crosby Seminar Room: This is the keynote for the Friday workshop. Professor Ruha Benjamin from Princeton University will present a talk titled, “Can the Subaltern Genome Code? Envisioning Innovation & Equality in an Era of Personalized Medicine.” More info available here.

Friday Sept. 30, 9-12, Northrop, Crosby Seminar Room: Workshop “Where is the Human in the Data?” showcasing the work of the ten graduate students who summer research analyzed the human elements of data research and smartphone applications. This workshop is meant to facilitate the beginning of more conversations about data and research design. More info available here.

See you tomorrow (and Friday)!

(Revenge) Pornography, Sexting, and a New Journal

I am so excited to have my work on revenge pornography published in the brand-new journal Screen Bodies. 

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An interdisciplinary, peer-reviewed journal, Screen Bodies publishes work addressing the intersections between screens (broadly defined) and the body. As noted in its Aims & Scope,

“The journal considers moving and still images, whether from the entertainment industry, information technologies, or news and media outlets, including cinema, television, the internet, and gallery spaces. It investigates the private experiences of portable and personal devices and the institutional ones of medical and surveillance imaging. Screen Bodies addresses the portrayal, function, and reception of bodies on and in front of screens from the perspectives of gender and sexuality, feminism and masculinity, trans* studies, queer theory, critical race theory, cyborg studies, and dis/ability studies.”

The article I published, “The Politics of Revenge (Pornography),” briefly traces the emergence of revenge pornography websites during the 2010’s and contextualizes them within broader discussions of postfeminism, neoliberalism, theories of the gaze, and pornography. For those who are unfamiliar with revenge pornography, it is the distribution of intimate photos without the consent of the individual who is pictured, often with the intent to humiliate said person.

While it’s encouraging to see how many states are passing legislation intended to curtail and prevent revenge pornography, what continues to disturb me is the amount of victim blaming that goes on when it happens. As Dr. Amy Adele Hasinoff* notes in her fabulous book Sexting Panic: Rethinking Criminalization, Privacy, and Consent, our cultural attitudes about sex and sexuality far more punitive for members of historically marginalized groups (women, people of color, non-heteronormative persons, etc.) than for white, cis, heterosexual men. In my own research for this project, it was shocking how many women are featured on revenge pornography websites compared to men. It was probably tens of thousands versus mere hundreds.

Although Dr. Hasinoff writes about teenaged sexting and not revenge pornography per se, I would argue that our cultural response to both can be understood as a moral panic: the fear that something (often related to sex) threatens the well-being of a society, a fear that is often compounded and exacerbated by media coverage.

Examples of moral panics: AIDS, sexting, and pornography

Without fail, every year my students tell me that the unit I teach on sex, pornography, and the Internet is one of their favorites. The ways that digital media are changing sex and intimacy are important and worth discussing. It does far more damage, I think, to dismiss activities like sexting and perusing revenge pornography as something only “bad” or “immoral” people do, when digital intimacy is actually an increasingly normative part of contemporary relationships.

* Dr. Hasinoff also maintains an excellent blog that is worth checking out!