VSI Update: Visual Snow Syndrome Research by Lynne Becker

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Interview with Lynne Becker

In my recent conversation with Lynne Becker, a biostatistician and epidemiologist created Power of Patients. Power of Patients is a web-based platform that allows patients and caregivers to track their symptoms and potentially accelerate clinical trials, such as in Visual Snow Syndrome research.

According to Lynne Becker, she has accumulated a highly adaptable skill set encompassing 25+ years of experience managing large international clinical trials. She has also been involved in ocular research for more than 10 years, including developing the first intraocular lens, multifocal trial designs, and LASIK studies. Moreover, she provides care to her two daughters, who have suffered Traumatic Brain Injuries (TBIs) and strokes. 

Her unexpected journey has led her to create a platform that aims to solve the biggest medical community problem: The knowledge gap.  

In many cases, clinicians have difficulty diagnosing Visual Snow Syndrome patients and prescribing effective therapies. This stems from a lack of knowledge within the medical community. Clinical trials are lacking because Visual Snow Syndrome is more than complex; it is intricate, complicated, and unique. The constellation of VSS symptoms is unique to every patient. However, the Power of Patients can change this. 

What Is The Power of Patients?

Power of Patients is the first patient-led real-time data warehouse that helps patients, caregivers, and providers in rehabilitation by sharing data and providing a resource for clinical trials, unlike existing electronic medical health care records. It is a website application where patients can track their symptoms and triggers. In addition, the app will give participants trends and longitudinal reports of what is happening during their doctor’s office visits.  

How Does It Work?

Lynne states, “It takes the patient’s words and turns them into data.” The web-based application is 100% personalized to the person’s symptoms, where the patient’s keywords are considered digital biomarkers. It is easier for researchers to access and use those biomarkers. Then clinical trials can be designed based on the warehouse of patient data.

“We don’t force people into specific “buckets” that most hospitals, researchers, and EHR systems put patients in. We’re peeling all those buckets apart because of the uniqueness of the condition”, Lynne states. 

How Do My symptoms Get Transferred Into Data?

A patient visits the website, registers, and then types their whole story. Fortunately, Lynne states she has plans to add an audio version so that users can input as much information as they wish. The more, the better. 

Afterward, algorithms will read the patient’s writing or speech, sorting keywords into the correct categories. It will then provide the patient with a bar chart, trigger data, 30-day longitudinal data, and journal data.  

What Do I Do With My Data?

According to Lynne, patients don’t necessarily know what a trend chart is, but they can bring it to their doctors to address the issue immediately. 


 VSI Update: Visual Snow Syndrome Research by Lynne Becker-Power of Patients“In one case, before using Sallie, a woman’s migraines were escalating to a very fearful level. She is a stroke survivor, so migraines were a warning sign that needed attention. Additionally, there was a 30% probability a re-stroke may occur. The woman started tracking with Sallie. Sallie is trained every time there’s a 10% jump in a severity score, an alert comes up. Since she started tracking, she’s been able to identify the symptoms ahead of time. She began monitoring things, received data, and brought it to the doctor. The doctor noticed that her migraines were related to hurricanes. After that, they observed that her migraines rose every time the barometric pressures changed as a hurricane approached. Additonally, the patient was able to stay out of the hospital, regain a better quality of life and started to work with her doctors to improve her care plan and management of her stroke. All of this was figured out by using Sallie to track her triggers for her symptoms”. 

Ultimately, sometimes a trigger that worsens symptoms isn’t necessarily a physical condition. It could be environmental, food, bright lights, a family argument, and more, says Lynne. 

How Can I Access The Power of Patients?

The Power of Patients platform is free and accessible via the website. Lynne states in January, there will be a free premium version for medical professionals. Once the patient visits the website, logs in, and registers, they are set up with an account. The process takes about 2 minutes. 

What Are The Future Goals?

Ultimately, the goal is to prescribe what patients should do first to accelerate their recovery. “Together, we can change the course of the research paradigm and shape more Visual Snow Syndrome Research clinical trials,” Lynne states.

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