Introducing the PicnicHealth Research Platform

By 
PicnicHealth
July 16, 2020
Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.

We’re excited to announce the next phase in our evolution, the official launch of PicnicHealth’s scientific research platform! 

PicnicHealth already has a long history of  working directly with patients to give them unmatched visibility into and control over their complete medical records. Now, with our scientific research platform, we give these same patients the chance to contribute their medical records data to advance scientific research. 

PicnicHealth started with the goal of taking some of the pain out of being a patient in the US Healthcare system. Medical records contain rich and meaningful patient health data that is currently buried in disparate and disorganized systems. For patients, accessing and organizing this information can be time-consuming and frustrating.  To date, we’ve helped tens of thousands of patients, most with chronic and complex illnesses, better navigate their care by porting their records from any doctor or EMR in the United States into a single, secure online account.  Along the way, we learned that giving patients access to their records had the potential to go even further: to drive research that can improve treatments in the future. The result is PicnicHealth’s scientific research platform.  

Today we are working with top research organizations across academia and industry to provide access to data from de-identified and aggregated records—if and only if patients opt in to contribute.  This data, known as “real-world data” helps researchers better understand what diseases look like outside of the controlled setting of clinical trials where research has traditionally been done.  This way, researchers get a more full picture of how diseases really look and how care really happens over patients’ lives.  They see how patients are treated outside of academic medical settings, how treatment and outcomes look for groups under-represented in research, or how disease symptoms change for different groups over their lives. For researchers, the lack of access to this data today slows efforts to create better treatments that can ultimately improve patient outcomes. 

PicnicHealth provides the most complete, richest, real-world data possible for this research. The only way to get this depth and breadth of data is working directly with patients who can consent to contribute medical records from all of their different providers across time and across different health systems.  Today, we are able to do this work at scale. Our combination of machine learning with clinician review is giving unprecedented access to high-quality real-world health data.

How PicnicHealth Works:

We collect patient health records on their behalf. With their written authorization, we collect complete records across all of a patient’s many providers, regardless of where they work or which electronic medical record (EMR) they use.  We digitize and organize complete records using advanced human-in-the-loop machine learning (HITL ML). Our team collates and digitizes every file. Our proprietary algorithm “reads” the records and a nurse validates each transcription. This approach allows us to process records at scale while ensuring accuracy and improving our algorithm with each record.

We give patients access to their complete records, organized in one place. Users can view their whole medical history in a timeline view that includes doctor notes and reports, imaging, lab results, medications, and more. Patients can easily search for the information they need or share access with family members and doctors. 

We anonymize and aggregate records to provide researchers with meaningful datasets. We can work directly with researchers to design the dataset they need and keep it updated as new patient records contribute additional data. Researchers use this data in a broad range of ways: 

  • Accelerate new drug development by using real-world outcomes as a control arm for clinical trials or to help inform regulators
  • Understand which patients respond to which treatments, so patients can receive optimal care
  • Better characterize the burden of disease and ensure patients can access the therapies they need
  • Improve diagnostic criteria and predictors of disease progression to help better manage patients

Part of giving patients ownership over their medical history is enabling them to use it for the greater good. We will continue to give patients the same one-click access to their complete medical records. Now, with the launch of this research platform, we are thrilled to help accelerate breakthroughs in care, too.

About 

PicnicHealth

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

We know that every person's story is unique and deserves to be heard.

Join our early breast cancer registry to be counted and share your story with research.

Learn More

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.

When 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.

2

Stay organized.

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.

3

Explore treatments and clinical trials.

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.

4

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. No one can pour from an empty cup.

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

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
Tip: Download or print the poster at the end of this article to review before your next appointment!
However, it's important to consult with a healthcare provider or registered dietitian to determine the appropriate amount of protein for your individual needs. In general, a diet with moderate protein intake (about 0.8 grams per kilogram of body weight per day) is recommended for people with kidney diseases.

Learn more about contributing to IgAN research with PicnicHealth. 

Learn More

Save The Top-10 List

Download this list to save onto your phone or print it out for your fridge!

Download PDF

Keep an Eye on These Test Results

Download this poster to save onto your phone or print it out for your fridge!

Download PDF

Resource Flyer

Explore the essential takeaways from Victoria's Webinar, along with some resources that she shared.

Download PDF

Pre-Appointment Worksheet

Prepare for your loved one's next appointment

Download PDF