“I don’t want to feel alone…”
Despite the billions of people that inhabit our world, often those diagnosed with a disease feel like they are alone and isolated. Travelling to medical centers, particularly from a rural setting, can be daunting; specialists can be hard to access; and physically connecting with others that may have the same diagnosis can be challenging, especially if a disease is rare and local resources are non-existent. This is where the Internet has provided a sense of community.
In the past 5-7 years, there has been a growing phenomenon of online patient communities such as patientslikeme.com and tudiabetes.org that provide a forum for those with health concerns to connect with others in a similar situation and openly discuss what it is like to deal with and manage their disease.
Today, many patients are trying to define their care and not just passively accept the decisions made for them. As patients are an integral part of the disease management process, these online communities allow patients to contribute to the medical process and represent a collective voice regarding their care. People can share their “real-world experience” and pharmaceutical companies, the medical community and even advocacy groups can better understand patients’ experience. This can lead to better treatment options and disease management, and ultimately better patient care.
As beneficial as these sites may be for sharing disease-related stories, they are not a substitute for medical advice, something that is clearly noted on all patient community sites (ie, always consult a professional). It is merely a forum to openly discuss what a patient is going through.
Regardless of the design of the online patient communities, be it to quantify the qualitative information, recruit for clinical trials, or be a place to chat and find out about community events, there is one common thread among them all: connecting with other people who manage similar diseases. In essence, patients (and people) should never feel alone.