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INTERVIEW

Liz Salmi - "I hope to keep growing as a patient with the goal of doing something that will be respected by the whole profession"

Fellow discusses her experience blogging and the e-Patients movement

Liz Salmi, a Fellow of Session 553 | Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship

Andrea Abellan | 13.03.2017

Liz Salmi is attending Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship as an advocate for patient access to complete medical records. 

Ms. Salmi was diagnosed with a brain tumor eight years ago. Since then, she has overcome two surgeries and the consequent challenges of being affected by a serious disease. 

Through her high participation in digital platforms, Ms. Salmi has become a voice of patients seeking greater accesses to their own health information. She spoke with Salzburg Global’s Andrea Abellan about her experiences. 

AA: With more than 30,000 visits each year your blog, thelizarmy.com is a reference on patient-focused websites. What prompted you to start blogging about your illness? 

LS: Before my cancer diagnosis, I was working in Marketing and Communications. When I first ended up in hospital, it came naturally to me to start writing about my situation. Eventually, I had to leave my job for a time to focus on my health, but I still felt that my ability to communicate was my strongest skill. 

I started blogging about brain cancer and my health condition immediately became well-known by not only my closest friends and family, but also by people I didn't know. In time I realized that the information I was sharing could be interesting because the number of comments kept growing. The decision to make my blog open was in hopes others could benefit from the information. 

AA: How has your experience of blogging evolved over time? 

LS: The topics I have chosen to blog about has changed a lot since I first started posting. In the beginning, as a newly diagnosed person, the blog was mostly focused on the uncertainties of my daily life. The content was very self-centered. 

After the treatment, I started to get more interested in other things, such as disease-specific research and public policies. Over time, I became more informed on health technology and on the idea of patients engaging more with the information in their electronic medical records. I have grown as a patient blogger just as I could have grown in any other professional “career”. 

AA: How are you involved in the e-Patients’ movement? What activities do you carry out as part of this group? 

LS: There are 40,000 searches made in Google every second, 2,000 of which are related to health issues. The Internet gives people access to information that make it possible for our doctors to be better. 

“e-Patient” is a person who is enabled, empowered, engaged in their health care. If you are engaged in your self-care and research about your health, then you might be an e-Patient. For now we need specific terms to describe this kind of active patient participation, but in the future, I hope this will become a standard attitude. 

AA: You also co-founded Brain Tumor Social Media (#BTSM), a hashtag community helping to connect people diagnosed with brain tumors. How is this group working? 

LS: Twitter has an amazing power to spread information. Health care professionals have realized the potential of the platform to reach their specific target audience. The use of acronyms as hashtags is making it easier to aggregate patients, caregivers, and care providers in the same conversation. 

Charlie Blotner and I were inspired by the online breast cancer social media (#BCSM) community to create something similar for people affected by brain tumors. We host a live tweet chat every first Sunday [of the month] at 6pm PT. These virtual gatherings have become a great opportunity to exchange support and learn about the latest developments in brain tumor research. 

AA: What do you expect from your participation in this session? 

LS: It is exciting to engage with Fellows who are facing the same challenges around the world. This [session] gives us the opportunity to learn how things are working in different parts of the world. 

For years, a complete medical record has been hidden from patients. I think these discussions around transparency and “open access” to information will be a catalyst for increased engagement by patients and lead to satisfaction in healthcare decisions. 

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The Salzburg Global program Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship is part of the multi-year series Health and Health Care Innovation in the 21st Century. The session is being supported by OpenNotes. More information on the session can be found here: www.salzburglobal.org/go/553. You can follow all the discussions on Twitter by following the hashtag #SGShealth

13.03.2017 Category: HEALTH, SALZBURG UPDATES, SALZBURG IN THE WORLD
Andrea Abellan