How to Stand Up for Yourself: Patient Empowerment and the ePatient Movement

The online event “How to Stand Up for Yourself: Patient Empowerment and the ePatient Movement,” offered by Human Health Project on July 8, 2022, was an effective presentation that discussed the relevance of the ePatient movement. This panel also discussed how it is possible for individuals to live with various forms of Inflammatory Bowel Disease, or IBD.

First, it is important to discuss the definition and relevance of an ePatient. An ePatient is a patient who uses online resources to research information about their medical condition. The HHP online event, “How to Stand Up for Yourself: Patient Empowerment and the ePatient Movement,” discussed the impact of the ePatient movement with panelists sharing their personal health related experiences. In addition, it is also important to discuss the relevance of Inflammatory Bowel Disease, which was an additional important component of this event. Inflammatory Bowel Disease, or IBD, is a disorder that causes chronic inflammation of the gastrointestinal tract. 

In discussing the main points of this event, panelist Suzy Burnett shared that she was diagnosed with Crohn’s disease over a decade ago. Crohn’s disease is a form of Inflammatory Bowel Disease that also causes inflammation of the gastrointestinal tract. Suzy’s condition had unfortunately worsened over time. At one point over the course of Suzy’s  illness, her protein levels became excessively high. As Suzy phrased in her own words regarding this situation, “I really was in a different stage of my disease and went from mild to severe in what felt like overnight.” Suzy was subsequently prescribed Humera, a medication that is used for the treatment of Crohn’s disease. As Suzy noted, this medication was extremely beneficial in her recovery process.

Suzy also explained that she had started her own online blog on information regarding Crohn’s disease. This was designed to help her connect with individuals in her own community as well as all over the world. Suzy’s blog, as she discussed, is helpful to  individuals who have also been diagnosed with this disease through emphasizing the importance of advocacy.

In addition, another panelist in this event, Megan Starshak, mentioned that she has suffered for a large part of her life from ulcerative colitis. This illness is a chronic disease of the large intestine that is also a form of Inflammatory Bowel Disease. Megan noted significant  resources that have helped her live with her illness. These include advancements in technology within the healthcare field, and involves the rise of social media. As Megan stated, “There is so much information accessible to everyone; it really has created a world of ePatients. It’s been amazing to see these changes and effects that’s had on individual patients, like Suzy and myself, and for the movement of larger communities as a whole.” As Megan further explained, the digital age was beneficial to patients, such as herself and Suzy, and increased awareness towards the ePatient movement.

Megan has ultimately gained insight in the healthcare field in coping with the challenges of her personal illness. She has also been an effective leader in providing significant and informative healthcare advice to others who are also suffering from ulcerative colitis. Megan also made an additional point that is also important to note. Through recognizing some of the struggles patients may experience, such as misinformation and lack of community support, platforms including Human Health Project can help in alleviating these issues and have a significant impact. Ultimately, both Suzy and Megan’s stories are powerful examples of how patients can persevere from their healthcare related challenges and live successful lives.  

More information about the HHP online event, “How to Stand Up for Yourself: Patient Empowerment and the ePatient Movement,” can be found here