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Introducing the PicnicHealth Research Platform

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.

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

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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.

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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.

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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.

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