Networks in Medicine
There are two types of “doctors” in medicine: those who hold a degree and those who don’t. Both these doctors share information regarding disease, support groups, and treatment options. And although, one is seemingly more credible due to his/her degree, the other can seem more convincing. So who is the other doctor? And why are they so important?
Patients have been sharing their experiences since the start of medicine. When someone gets a cold, everyone around them suddenly becomes an expert on the cold virus—“you should take X medicine” or “get Y test done to make sure it’s not Z disease.” In cases of very specific or long-term diseases such as cancer or MS, patients (and their families) become lay experts. Technology allows such knowledge to be shared among people facing similar diseases and health issues.
The Patient-Centered Outcomes Research Institute (PCORI) launched patient powered research networks (PPRNs) in 2013. These networks connect patients with related health issues together. These patients were also interested in contributing to and participating in research. However, since the patient decides how much information he/she wants to share, the patient has complete governance of their records. Even more so, the article reports that PPRNs were also focused on “expand[ing] their patient communities,” which not only provided more research data but also increased the connections between patients. To those with access to technology, these networks could potentially provide a surplus of information that doctors simply could not release.
In addition to supporting patients, PPRNs could provide many answers to research questions. Because the network was grouped by related conditions, self reported patient data may indicate trends that were typically over looked. While the network probably did not distinguish connections through strong or weak ties, the theory could be applied. In terms of graph theory, the patients are the nodes and related symptoms or treatments or clinical trials were edges. For example, two patients with unrelated diseases might have a weak tie due to either a similar treatment or symptoms. This could indicate some kind of relationship between these two diseases that was unknown.
In general, PCORI has increased the transparency of the medical world between investigators/physicians and patients. However, since PCORI and the launch of PPRNs is relatively recent, its future impact is still unknown.
Source: http://content.healthaffairs.org/content/33/7/1212.full