HomeBlogMedical Research
HomeBlogMedical Research

How PicnicHealth is pioneering research in lupus with real-world data

Did you know that developing a new drug takes more than a decade and costs hundreds of millions of dollars, on average? Part of that inefficiency 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 lupus 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. And when patients and doctors don’t have the full picture of a patient's medical history, it can lead to slower diagnoses and missed insights in matching patients to the right treatments early.

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.

Now, PicnicHealth is expanding its research to lupus and looking for volunteers 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/lupus.

Create a List

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.

Ensure You Have the Appropriate Legal Status

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.

Gather and Organize the Medical Records in One Place

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.

Review the Medical Records to be an Informed Advocate

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 More

Together, we can make a difference.

Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association

Learn More
1

Build a support network.

If your loved one is in the early stages of Alzheimer’s, putting a support system together might not seem like priority #1. But it’s never too soon to build a network of people that you can turn to in times of need. Cultivate connections today with the people who can be there tomorrow, or whenever you might need a hand.

You may also want to connect with other Alzheimer’s caregivers through a support group, whether it meets 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 the world of Alzheimer’s.

2

Stay organized.

If your loved one is in the early stages of Alzheimer’s, putting a support system together might not seem like priority #1. But it’s never too soon to build a network of people that you can turn to in times of need. Cultivate connections today with the people who can be there tomorrow, or whenever you might need a hand.

You may also want to connect with other Alzheimer’s caregivers through a support group, whether it meets 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 the world of Alzheimer’s.

3

Plan for the future.

It isn’t always easy to look into the future with Alzheimer’s—but doing the legwork now will save you from stress later. If your loved one is in the early stages of illness, you can involve them in conversations about legal, financial, and long-term care planning decisions. Despite the difficulty of these topics, you’ll all feel empowered by facing them early, and you can move ahead with greater confidence.

4

Explore treatments and clinical trials.

It’s an exciting time for Alzheimer’s research, with new treatments in development and coming to market. Ask your loved one’s doctors about therapies they can try or clinical trials they can join. One easy way to participate in research is to sign up at PicnicHealth, which helps to advance Alzheimer’s science by sharing participants’ anonymous health data with some of the brightest minds in research.

5

Make time for self-care

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 with Alzheimer’s. And don’t forget to keep a sense of humor along the way.

Having trouble managing your loved one's medical records?

Easily manage all of your loved one's medical records and contribute to ongoing Alzheimer's research with PicnicHealth.

Learn More

25,966

patients onboarded to platform

1,427,368

medical visits processed

56,861

facilities provided medical records

255,101

healthcare providers

95+

research programs

12

published posters and manuscripts

10

partnerships withtop 30 pharma

New Research

Discover how PicnicHealth data powered medical research in 2021

Keeping Patients at the Center

This year, experts from PicnicHealth joined podcasts, webisodes, virtual summits and much more to speak to the importance of patient-centric approaches when building complete, deep real-world datasets.

LC-FAOD Odyssey: A Preliminary Analysis, presented at INFORM 2021

Data from real-world medical records:

(from 13 patients with LC-FAOD)

16 yrs old

Median age at enrollment

38% Female

15 providers / patient

7.5 years of data / patient

Data from patient-reported outcome (PRO) survey

(from 13 patients with LC-FAOD)

We hope you found this session informative! Sign up for PicnicHealth’s Alzheimer’s research program below.

Join Now

Meg is PicnicHealth's Growth Partnerships Lead.

Downloads

View Document

Downloads

View Document

Downloads

Oops! Something went wrong while submitting the form.

About PicnicHealth

Empower people to own their medical records. Advance medicine. We’re a passionate group of doctors, patients, data nerds, engineers, and builders, who believe in making something real that changes lives today and in the future.

Sign Up