Why PicnicHealth is using real-world data for a new kind of research in Sickle Cell

It’s estimated that roughly 100,000 people in the U.S. live with sickle cell disease, yet it feels like there’s not enough attention on learning more about the disease and coming up with better treatments for so many people.

That’s why PicnicHealth is working on new research that uses data from medical records to better understand the day-to-day challenges of living with sickle cell. It’s one of PicnicHealth’s most important research focus areas, with more than 500 people with sickle cell signed up already. This research will help the medical world get better information about things like when and how frequently pain crises happen, as well as how they’re treated for different people.

PicnicHealth is still looking for more volunteers with sickle cell disease. New volunteers will be compensated as a thank you for participating.

“Dealing with sickle cell has been a lifelong rollercoaster. The thought of my voice being heard in the world of medicine is really what motivated me to join this study. Not only to advocate for myself but others and knowing the advocacy put forth will have both a powerful and positive impact,” said Chinara, a sickle cell disease warrior and PicnicHealth research participant.

One reason for the slow progress in finding new drugs and treatments is because scientists don’t have access to all the medical data that would help them better understand the diseases they hope to treat. Unfortunately that means patients have to wait for innovative new treatments, and when they arrive, they can be costly.

At the same time, anyone impacted by chronic diseases like sickle cell disease knows the frustration of dealing with dispersed healthcare records. Dozens of calls and faxes to various doctors return messy records that patients must make sense of on their own. This is even harder for parents who are managing their children’s sickle cell. When patients and doctors don’t have the full picture of a patient's medical history, it can lead to missed insights in matching patients to the right treatments.

Fortunately, PicnicHealth has created a novel approach to tackling both challenges. 

“I founded PicnicHealth after managing a Crohn’s disease diagnosis. It started as a way to give patients more control navigating their own care,” said Noga Leviner, co-founder and CEO of PicnicHealth. “We quickly realized we were actually solving a much bigger problem by turning each patient’s messy, nonuniform medical records into structured data. The result not only helps patients directly but it also really moves the needle on research.”

PicnicHealth does the hard work of collecting all your medical records, from all doctors, and organizing them into a single timeline accessible with one click. PicnicHealth also creates medical data sets that researchers can use—but only if a patient consents to share their de-identified data. Using de-identified data of thousands of patients, PicnicHealth gives researchers a uniquely rich view of how diseases are experienced by patients and treated by clinicians in the real world, well beyond the highly controlled setting of clinical trials.

PicnicHealth doesn’t just redact medical records; they extract specific pieces of information from your records—like lab results or medications—and put those into a separate file to keep your privacy safe.

PicnicHealth has now helped tens of thousands of patients diagnosed with chronic or complex diseases, and most of them have actively opted-in to contribute their de-identified data to medical research. Patients can sign up in 10 minutes by providing basic info and the names of your doctors or hospitals. It’s free for anyone who volunteers to contribute their de-identified data to help research.

“Especially during the Covid era, we’ve heard from our users that they really appreciate being able to do their part for research easily from the safety of their home,” said Leviner.

Currently PicnicHealth is looking for volunteers with sickle cell disease to contribute their data. Together with patients, PicnicHealth is changing the future of health for the better by giving patients and doctors better visibility of their medical records, and by equipping researchers with data to help accelerate the development of new treatments. 

Learn more and sign up for PicnicHealth at PicnicHealth.com.


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