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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List the names of all the doctors, hospitals, and other facilities your loved one visits regularly, along with those they have visited in the past. Try to go back as far as you can, striving for at least the last 5-10 years, but do your best. Even if you can’t remember them all, having a strong baseline can help you quickly identify gaps in records.
It is important to make sure that you are fully empowered to make decisions on behalf of your loved one with Alzheimer’s. Your relationship status with the patient may not be enough to legally give you access to your loved one's medical information. It is a good idea to talk to an expert about securing special legal status, such as Power of Attorney (POA), a legal document that allows an individual to name someone as their decision maker should they no longer be able to make decisions on their own.
It’s important to have all of your loved one’s medical records together in one spot. This makes it much easier for you and your loved one’s physicians to accurately map the patient’s medical journey and more easily share information between doctors. Fortunately, tools exist to make record management and access simple. A free resource like PicnicHealth helps you collect and organize all of this information. PicnicHealth’s intuitive timeline allows you to pinpoint data across the medical history, eliminating your need for keeping heavy binders filled with paper records or keeping track of multiple software portal logins.
The better you understand your loved one's medical history, the better you can advocate on their behalf. Access and understanding of this information will help you to ask informed questions with physicians. Through regular communication backed by the data in the medical records, you can help your loved one’s care team develop a more successful care plan.
Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association
Learn MoreWhen you’re juggling appointment times and insurance claims, putting a robust support system together might not strike you as the most urgent task. Investing the time to cultivate relationships with people can turn to in times of need will pay dividends. The next time you need a last-minute ride or just someone to listen, you won’t be on your own.
There are many condition-specific support groups and support groups for caregivers generally in person or online. In addition to the encouragement and empathy they provide, support groups can be a helpful source of tips, resources, and recommendations for navigating caregiving.
The backbone of effective caregiving is organization. Keep medical information, appointment schedules, and medication lists in order. Use a planner or a digital service like PicnicHealth to stay on top of your responsibilities. This attention to detail can prevent future complications and reduce day-to-day stress.
We’ve seen incredible breakthroughs in treatment over the past couple of years, powered by patients and their caregivers participating in research. Stay in the loop about the latest in medical advancements and available resources that could benefit your loved one. Whether it’s a new therapy option or a community service that aids independence, being informed can make a world of difference in the quality of care you provide.
It may seem self-centered to focus on self-care—but when you feel good, you can be a better caregiver. Whether it’s exercise, a mindfulness practice, a soak in the bath, or just time to rest when you need it, carve out those moments in the day when you can unwind, reset, and stay healthy mentally and physically. Think of it as building up your reserves of kindness, patience, and understanding—which can only benefit your loved one. No one can pour from an empty cup.
Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.
Learn More(from 13 patients with LC-FAOD)
38% Female
15 providers / patient
7.5 years of data / patient
(from 13 patients with LC-FAOD)
We hope you found this session informative! Sign up for PicnicHealth’s Alzheimer’s research program below.
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