How you can see all your medical records and support IBD research at the same time

By 
Alan Donner
October 9, 2020
Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.

Have you ever struggled to track down medical records from a past doctor visit? You’re not alone. “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.

PicnicHealth does the hard work of tracking down medical records for patients, giving them access to their complete records, organized in one place. Users can view their whole medical history in a timeline view that includes doctor notes, imaging, lab results, medications and more. Patients can easily search for the information they need or share access with family members and doctors—which can be critical when seeing a new specialist.

“We save patients hours of work by contacting providers, collecting electronic and hard-copy records, digitizing and organizing everything into an easily-to-navigate format they can actually use,” said Leviner. By giving patients and their doctors full visibility into their medical history, PicnicHealth hopes to ensure patients get the best treatments—preventing redundant or suboptimal care.

“Every day we hear stories from patients where PicnicHealth has made a difference, whether it's catching something in a record that they weren’t aware of, avoiding unnecessary testing, or getting to a diagnosis faster because their doctor has all of the pieces to the puzzle,” said Leviner.

But Noga and her team at PicnicHealth also realized they 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.

How do medical records help research? With PicnicHealth, patients can choose to contribute their data to scientific research, which helps life sciences researchers accelerate breakthroughs in care. Researchers use this anonymized “real-world data” to understand how diseases are experienced by patients and treated by clinicians in the real world, going beyond the highly controlled setting of clinical trials. The goal is to create better treatments that can ultimately improve outcomes for patients.

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.


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

About 

Alan Donner

Alan is PicnicHealth's Head of Marketing.

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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

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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.

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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)

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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.

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