An Open Source Cure for Cancer?: Paticipatory Medicine in the Digital Realm

By lilym

Diagnosed with brain cancer in September 2012, Italian designer, computer engineer, and hacker Salvatore Iaconesi decided to publish his personal medical data online, inviting the public to respond. The result was the creation of an online community of cancer survivors, family members, doctors, and other allies who came together to support Iaconesi (and each other) in treatment. La Cura therefore came to embody a collaborative social space, uniting treatment and healing outside of the hospital setting.

The project was motivated by Iaconesi’s experience as a patient—an experience he has described as dehumanizing and altogether isolating. According to Iaconesi, after diagnosis, he felt his individual identity disappear; in becoming a patient, his complexity as a human being was ignored to the point where he became a set of data for doctors to analyze and manipulate. Personal identity had been taken out of the equation, and data (rather than the human condition) came to determine his treatment.

La Cura essentially turned this dynamic on its head, appropriating Salvatore’s medical data and breaking the patient paradigm. The data was published online where anyone could access, interact with, or respond to it, thereby producing their own creative meaning. No longer a medical commodity, “the cure” became a social relationship born out of the interactions of the public. Salvatore’s project developed into an important global performance where personal expression marked a social consciousness. Cancer, as a social performance, is perhaps more suited to such treatments.

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Brain scans from Iaconesi’s medical record.

In the hospital setting, data associated with the body is expressed in language particular to doctors and other medical practitioners. Iaconesi was frustrated to find that his digital medical records were in a closed, proprietary format that he could not even open on his own computer. Feeling that his humanity had been replaced by restricted clinical records, he began with translating electronic medical records into “personal open data”.  As he explains on his website, he “cracked them[…,]opened them and converted the contents into open formats, so that [he] could share them with everyone.” (Iaconesi). He began by sending the data to doctors, and publishing their responses using open formats so others with his condition could benefit from the information. He compelled visitors to his website to “grab the information about my disease[…]and give me a CURE: create a video, an artwork, a map, a text, a poem, a game, or try to find a solution for my health problem.” (Iaconesi).  Obviously these formats are not one would traditionally associate with medical “cures,” but they serve to reframe the notion of “the cure” in as a more socially and community-based creation. At the end of this experiment, Iaconesi received, 35 videos, 600 poems, 15,000 testimonies, 500 reviews of doctors, and over 50,000 different strategies to cure his cancer.

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Portion of relational graph of submitted “cures”. (Full version can be found on La Cura website)

Resistance to these types of programs is often heard from healthcare practitioners and medical institutions that see the digital sphere as potentially misleading and unreliable. While these concerns are certainly founded, the potential for positive change in healthcare through such initiatives cannot be overlooked: digital spaces of interaction such as the internet allow for the public negotiation of power and an active sort of social creation that can be found nowhere else.

In open source, “a common problem is placed in a common space, and people from around the world turn themselves to working, in parallel, on this problem.” (Lessig, 107) This, in effect, turns the structure of governance on its head, as the control of information is central to power. Through La Cura, Iaconesi explores how networked communications are used to to empower both patients and patient communities. The internet both pluralizes flows of information while simultaneously widening the scope of commentary.

Though not quite what Larry Diamond has envisioned, parallels can be drawn between Iaconesi’s project and “liberation technology”. According to Diamond, liberation technology “is any form of information and communication technology (ICT) that can expand political, social, and economic freedom.” (Diamond, 70). Aiming to humanize and health care through the use of participatory media and digital communication, La Cura circumvents the traditional power structures of information—here, the ones that structure medical knowledge. Health care has been recast in a decidedly social way, shifting not only the dynamics of the patient/practitioner relationship but also the overall approach to disease treatment. Actively performing their own healing process with the use of digital media, users are empowered by such a reimagined system, constructing a reflexive space of creative healing.

More democratic healing practices target all spheres of a patient’s life and wellbeing. The environment of such living labs are co-developed with users—not just for them—to transform the healthcare center into a social hub where a diverse array of individuals’ distinctive needs initiate creation, rather than normalization. As in La Cura, active collaboration and performance in a social setting initiates a unique thinking process that targets the healing of the individual human being, rather than isolated treatment of a medically-defined disease. This expansion of participatory medicine into the digital realm allows for a more inclusive and interactive form of whole person care. As health becomes regarded as more than just the absence of pain and suffering, the dynamics of illness and disease must be viewed within this expanded framework of social, mental, and community health.

References

Diamond, L. (2010). “Liberation Technology,” Journal of Democracy 21(3): 69–83.

Iaconesi, S. (2012). La Cura, an Open Source Cure. http://opensourcecureforcancer.com/

Lessig, L. (1999). “Open Code and Open Societies: Values of Internet Governance,” Chicago-Kent Law Review 74, 101–116. http://cyber.law.harvard.edu/works/lessig/ final.PDF.

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