Answering complex research questions requires the ability to access endpoints from across a patient’s journey. Typically, patient data is spread across various providers, healthcare networks, and formats, making data access and retrieval more challenging. PicnicHealth’s approach captures complete journeys by retrieving data through electronic data networks (EDNs), which provide access to electronic medical records, and direct facility retrieval (DFR), which retrieves records directly from individual sites.
To understand the variation of data availability between each record source and how each improves record completeness, our researchers analyzed 474,000 medical records from 3,842 US-based PicnicHealth patients with confirmed multiple sclerosis diagnoses. The results of the analysis underscore the importance of a multi-modal approach to data retrieval for observational research and its impact on record completeness.
Record Availability & Journey Representation
For this analysis, DFR records came from electronic, fax, and paper transfers from medical record offices. All EDN records came from networked digital sources commonly used in observational research. Both EDN and DFR records included unstructured data, like doctor’s notes, which were rapidly abstracted and digitized through PicnicHealth’s proprietary technology.
Across included patients, data was readily available from both EDN and DFR sources. The median patient had 147 DFR records, and 83% of patients had 50 or more EDN records; this suggests that retrieval was not biased towards one viable source in the studied population.
In isolation, each source provided only a fragment of a patient’s medical journey – only 18% of visit records were found in both the EDN and DFR retrievals. Out of the complete visit history retrieved, EDN captured 63% of visits and DFR captured 55%.
When combined, EDN and DFR records expand the longitudinality of a patient’s medical history and enhance the data availability within that timeframe. In this analysis, the DFR records represented an average of 9.41 years of visit records per patient and the EDN records spanned an average of 9.34 years. But together, EDN and DFR records represented an average of 12.72 years of patient visits.
Multi-Modal Observational Research
The combination of EDN and DFR records significantly enhances the completeness of the patient journey, capturing longer and more complete medical histories than either source alone. In pursuit of more complex research questions, approaches like PicnicHealth’s that leverage multi-modal data sources, including EDN and DFR records, will be integral for high-quality research insights.
Learn more about how PicnicHealth can advance your research.
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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