The Clinical Trials Connection

At the most fundamental level, the world is comprised of objects that interact with other objects. Objects can be defined as people, locations, molecules, or even ideas. Movement, communication, and perception can all be considered forms of interaction that occur between objects. A system is a collection of these objects which behaves in a certain manner that can either be predictable or chaotic. In order to make this chaos simple, these objects can be represented as a collection of nodes. A links or arc represents a pathway that can be physical, social, and virtual (e.g. roads, relationships, and clickable hyperlinks, respectively). It is through these pathways that these interactions will occur. In certain instances, novel interactions create new arcs, contributing to an ever-changing topology of our networked world. The interesting aspects of networks are the emergent properties that manifest themselves from the system composed of dynamic interactions that occur between the linkages. However, one must be able to understand the appropriate context in which networks can provide valid insights. The intersection between reality and network representation is where complex system and network science becomes relevant.

Social networks play a valuable role in the research domain, and I’m not just talking about Facebook. I’m talking about the relationships or connections between people. Social networks are important since they determine who researchers are communicating and collaborating with. In these networks, the nodes represent people and the arcs represent the personal or business relationships. Social networking sites such as LinkedIn have formalized these organic connections through a convenient virtual medium (i.e. your internet browser). The number of these connections can determine a person’s social capital since they have access to more information and opportunities. Social network analysis has employed these types of collaborative social networks.

My LinkedIn Network – can you find me? (Courtesy of SociLab))

In some instances, these social connections provide accessibility to healthcare. After our visit to the National Kidney Foundations, we received a brief glimpse of their vision to create an online social community in order to facilitate advocacy outreach, as well as provide patient-to-patient mentorship. This virtual community also serves as a reliable device to recruit and support patients for clinical trials. Even the Food and Drug Administration (FDA) have suggested that a Match.com-esque platform to help patients find relevant clinical trials for their ailments. The neat part of social networks is that they can transcend the physical world by becoming virtual. In other words, it is now possible to meet people without ever seeing them.

In this Age of Information, the ability to understand our world lies in our own capacity to perceive the world in networks. The Internet, an inherently networked entity in itself, has streamlined data collection so dramatically that research can now be conducted remotely via a Wi-Fi or coaxial cable connection. In the realm of clinical trials and translational medicine research, the ability to pass information back and forth efficiently has now become a necessity. The transformation from paper to electronic-based data collection is happening. Broadly speaking, efficient information exchange and extraction has become so paramount in the networked economy that it has now even become the line of scrimmage for financial firms to compete.

Whenever someone Googles symptoms of a particular disease, that action can be tracked and trends can be traced. The Fitbit that you bought because it was the next big fad is actually harvesting your biometrics and uploading into the so-called Cloud. Observational trials are beginning to harness the power of Big Data by exploiting remote sensing technology. Companies such as Flatiron have already capitalized on this vast information network and pushed the frontiers of oncology research. According to Ofcom, the average human internet user spends over 20 hours online. Think about how much time you spend on the computer or your smart phone. This is a LOT of data that is being transmitted – a proverbial treasure trove of behavioral data.

Whether for better or for worst, when a person spends this significant amount of time in a virtual world, it starts to become alternate reality in which habits are monitored. In this case, the alternate reality takes place in a world that is structured as a network where the nodes represent computer terminals, and the arcs represent online connections. One can foolishly dismiss this idea as a philosophical abstraction, but as the boundary separating the physical and virtual realms slowly blurs, it will be necessary for researchers to consider the connecting medium between them and patients.

The main purpose of medical research is to generate knowledge using information. That is currently done by collecting information from the patients during the clinical trial process. But what if we can generate this knowledge using a different process to collect high quality information? Big Data is still not an adequate proxy for clinical trials, but there is potential. As Jim Carrey’s character once said in the 1996 cult classic, Cable Guy: “Time to take a ride on the information superhighway.”

Aside from the metaphysical implications of Big Data, networks can also provide us a concise representation of international relations. Using the Clinical Trials Transformative Initiative (CTTI) AACT dataset, it was possible to get a snapshot of the interactions on a country level. The following figure shows the connections between the clinical trials lead sponsors’ country and the location of facilities (clinical trial sites). In other words, the countries are the nodes, and the links represent the connection between lead sponsors and sites. These network arcs can also symbolize pathways in which the massive amounts of information flow between sponsors and sites in order to coordinate complex clinical trials enterprises. One can also say that these arcs represent the economic ties that pharmaceutical companies create as a result of asymmetric policies. Whatever the interpretation is for the existing connection, it is apparent from the following map that clinical trials are an international phenomenon. Data is a currency, and can be just as fluid as money. The following network shows just how far information can be transported.

Generated from the CTTI AACT Dataset

However, with the onset of hyper connectivity in a globalized world, there’s always a caveat: Privacy. Some argue that privacy is a product of culture, while others argue it is a fundamental human right. In the era of mass data surveillance that exploits a well-connected information network, it can be easy to encroach on people’s personal business. The act of privacy also includes the ownership of one’s personal information. Who truly owns your information in this age? We have all heard of the hazards of identity theft, and its ramifications. Although I agree with the sentiment of privacy rights, I would find it difficult, if not impossible, to maintain complete ownership of my personal information. I would argue that in order to maintain complete ownership of your information in modern times, one must move to a remote location somewhere in the forest and engage in the strict practice of Neo-Luddism while devoid of all communication to the outside world.

The true effects of the Health Insurance Portability and Accountability Act (HIPAA) can and has been argued, but nonetheless the need for effective and robust policies is evident. Even then, you’re probably still photographed by the Google Street View van. Nevertheless, we will continue to explore these avenues; it is my hope that we develop a solution that will consider the privacy issues of patients while maximizing the utility of information and networks. We will also consider a wide array of network analysis tools to aid us in this exploration. In the meantime, please just accept that there is no escape from the Network – we are all part of the Network.

Gary Lin