Welcome to our first Research Roundup. In this series, we highlight the latest research conducted on PicnicHealth.
PicnicHealth is simplifying observational research by combining a direct-to-patient approach, industry-leading AI and technology, and world-class clinical expertise to capture the patient experience in an unprecedented level of detail.
Background: Immunoglobulin A nephropathy (IgAN) is the most common primary glomerulonephritis in the world. With new therapies emerging, understanding disease management for IgAN patients is necessary to uncover unmet needs in this population. This study aims to describe the demographics, clinical characteristics, and disease management of IgAN patients in the United States.
Methods: PicnicHealth enrolled 165 patients with IgAN between August 2022 and November 2023. Structured and unstructured data were abstracted from patient medical records collected across all their U.S. sites of care. The study included patients with a confirmed IgAN diagnosis and at least one nephrology visit. Descriptive statistics for patient characteristics, healthcare resource utilization, and medication use were reported.
Results: Results demonstrated that although 79% of patients were prescribed a current standard of care medication for IgAN, their disease still progressed with 37% of those patients having at least one comorbidity, highlighting an unmet need among these patients.
How PicnicHealth simplified this observational study
Through PicnicHealth’s virtual recruitment and enrollment methods, researchers were able to enroll a diverse participant group– with 40 U.S states represented– across a median of 8 care sites per patient. The study also leveraged PicnicHealth’s human-in-the-loop machine learning for efficient and accurate data extraction. The comprehensive approach delivered the complete picture of IgAN patients' medical history and outcomes and enhanced the study's ability to deliver valuable insights into the condition´s management.
Myasthenia gravis (MG) is a neuromuscular disorder characterized by fluctuating muscle weakness. Since feelings of weakness can fluctuate daily, it has historically been difficult to determine the disease's burden. This study investigated the feasibility of collecting patient-reported outcomes virtually to quantify disease burden and severity accurately.
Methods: PicnicHealth enrolled 249 U.S. patients with MG from 2021 to 2023. Medical records were collected across all patients’ sites of care, and structured and unstructured data were abstracted using human-in-the-loop AI. Patients were administered the MG Activities of Daily Living Profile (MG-ADL) patient reported outcomes (PRO) survey on PicnicHealth's virtual patient portal within 90 days of enrollment, allowing the researchers to categorize disease burden and severity and summarize treatment patterns and demographics with descriptive statistics.
Results: This study collected a median of 7.2 years of medical records per patient and 2 years of PRO responses. The data showed a median total MG-ADL score of 9, with 17% of patients classified as mild, 48% as moderate, and 35% as severe. Women had higher MG-ADL scores than men, indicating more severe symptoms. Patients with mild MG reported specific symptoms like breathing difficulties and eyelid droop, while those with moderate and severe MG had a broader range of symptoms. Mild patients used fewer unique treatments compared to moderate and severe patients.
The MG-ADL survey proved an effective way to classify patients with MG into severity categories.
How PicnicHealth simplified this observational study
Through PicnicHealth, researchers could efficiently streamline data collection and simplify PROs for patients through a single, easy-to-use virtual platform. This portal not only gave patients a streamlined way to complete PROs but also gave them access to their complete medical history, providing value outside of the study.
Background: While traditional clinical trials are considered the gold standard for research, real-world data (RWD) offers valuable nuances and efficiency. This study evaluates the quality and data reliability of RWD in clinical research, focusing on PicnicHealth’s registry of patients with Paroxysmal Nocturnal Hemoglobinuria (PNH), a rare blood disorder.
Methods: PicnicHealth enrolled 90 patients with PNH between 2020 and 2023. Medical records were collected across all patients’ sites of care, and structured and unstructured data were abstracted using human-in-the-loop AI. The Duke Margolis quality framework was adapted to assess data reliability through programmatic rules identifying potential issues. The study included descriptive statistics for key data elements, focusing on identifying and correcting data errors.
Results: PicnicHealth collected a median of 222 records per patient over 10 years. The study applied 143 disease-agnostic and 19 PNH-specific quality rules, identifying 105 errors. Common errors included conditions before diagnosis and outliers in vital signs. Errors were reviewed by clinicians, leading to data corrections or justifications. Typical causes of errors included missing records, which led to requests for additional records; abstraction errors, which were corrected by clinicians; and errors in the source medical records, which were dismissed with a note from the reviewer. This process highlighted potential anomalies in PNH patient care, allowing for data corrections and improved data provenance and quality.
What this means
Through PicnicHealth’s technology and human verification processes, data corrections can be tracked and traceable to source records, not only ensuring high data quality, but also enhancing transparency.
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See more posters and publications at lifesciences.picnichealth.com/publications, and explore how PicnicHealth can drive your observational study forward at lifesciences.picnichealth.com.
patients onboarded to platform
medical visits processed
facilities provided medical records
healthcare providers
research programs
published posters and manuscripts
partnerships with top 30 pharma
Discover how PicnicHealth data powered medical research in 2021
New methods to improve the identification of lupus nephritis patients in RWD using narrative text extraction were presented at the American College of Rheumatology Convergence virtual conference.
Ultragenyx and PicnicHealth presented preliminary data at the International Network for Fatty Acid Oxidation Research and Management (INFORM) LC-FAOD conference, showcasing the power of linking medical records to patient reported outcomes to better understand the complexities in LC-FAOD care.
We joined Roche-Genentech and other key researchers to introduce a longitudinal, patient-centric Hemophilia A real-world dataset that features abstraction of data points from medical records at scale and supplementation with patient-reported outcomes at the American Society of Hematology annual meeting.
Also at ASH 2021, Roche-Genentech and our research partners presented new findings looking specifically at mild and moderate hemophilia A patients found in PicnicHealth’s RWD cohort to better understand disease burden and healthcare resource utilization in this historically underrepresented patient group.
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.
CMO Dan Drozd joined The Evidence Base to discuss how to build and measure data completeness
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BBC Storyworks and Roche featured Noga Leviner and her medical journey in “The power of partnerships”
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CEO and Co-founder Noga Leviner joined our partners Komodo Health to discuss patient-centric RWD in “For the Health of It”
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PicnicHealth experts joined Arsenal Advisors in 3 summits to highlight our research partnerships
(from 13 patients with LC-FAOD)
38% Female
15 providers / patient
7.5 years of data / patient
(from 13 patients with LC-FAOD)
patients onboarded across 19 conditions
medical visits processed
healthcare providers
Facilities provided medical records
Change Champions onboarded
Research programs
published posters and manuscripts
partnerships with top 30 pharma
At ASH 2022, Genentech, a member of the Roche group, and our research partners presented their study examining the epidemiology and bleeding phenotype in females with mild Hemophilia A (HA), a minority group that is poorly characterized, compared with a cohort of males with mild HA.
At EHA 2022, Novartis used PicnicHealth’s real-world data to characterize sickle cell disease and burden of illness in the United States.
Genentech leveraged the FlywheelMS cohort to describe COVID-19 vaccination patterns and COVID-19 outcomes among people with multiple sclerosis (pwMS) and in subgroups of pwMS, including by disease-modifying therapy (DMT) status.
We partnered with Alexion, AstraZeneca Rare Disease to help identify flares in Lupus Nephritis patients by combining structured and unstructured medical records with lab data.
Cohort Overview. Understand patient healthcare utilization throughout disease history with ability to probe for meaningful mentions and events.
Sickle cell (SC) is the most common inherited blood disorder in the United States. Red blood cells become rigid and shaped like crescent moons, preventing oxygen from getting to parts of the body. This can cause fatigue, severe pain, organ damage or stroke.
Addition of Narrative Text Abstraction to ICD-Based Abstraction Significantly ImprovesIdentification of Lupus Nephritis in Real-World Data
Join our early breast cancer registry to be counted and share your story with research.
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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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