This article was inspired by content discussed in our webinar, Cutting Edge Conversations: Fighting Neurodegenerative Diseases.
Imagine treating a Parkinson’s Disease (PD) patient long before the event that puts them in the hospital. Or identifying an Alzheimer's Disease (AD) patient using caregiver feedback on behavioral symptoms, often forgotten and unreported by those who suffer from dementia. Real-world evidence (RWE) can make the hypothetical a reality.
RWE offers insights generated from real-world data (RWD) and analytics, which can be used to accelerate medical research and improve patient care. Once considered a bold new approach, RWE is growing recognition and acceptance by decision-makers across the life sciences ecosystem. The interest in RWE comes now not only from regulators like the U.S. Food and Drug Administration (FDA), payers, and health technology assessment (HTA) bodies. Increasingly, biopharma companies seek to demonstrate their products' effectiveness in the real world, outside a randomized controlled trial (RCT) setting.
Currently, most life science (LS) companies rely on repositories of routinely collected RWD from claims and electronic medical records (EMR) to identify patients and the providers who treat them.
The information generated from claims data typically captures many patients but may be limited to short time frames and a shallow, incomplete view of patient care in the real world.
Structured EMR datasets have begun to provide some clinical value but lack information on patient characteristics and treatment decisions derived from provider-patient conversations (which can often only be found within the narrative text).
Seeing a comprehensive and continuous picture from blurry, truncated, and siloed data is nearly impossible for any disease. Building a complete picture is especially difficult for patients visiting multiple healthcare facilities – primary care doctors, specialists, supportive care, diagnostic laboratories, urgent care, and so on – an everyday reality for patients suffering from neurodegenerative diseases (ND). Moreover, the routinely-collected data may miss vital information about what happens between visits, an essential part of the story for the neurodegenerative population. We may consider such information anecdotal and supportive in other diseases, however, this data missing in the context of ND can prevent researchers from:
The therapeutic field of neurodegenerative diseases has been plagued with multiple failures across the industry. FDA Commissioner Robert M. Califf recently called for “innovative approaches to better understand [neurodegenerative] diseases while also building on current scientific and research capabilities.” (FDA)
By working directly with consenting patients who contribute their medical data to research, LS companies could build the complete picture of a patient’s health across all providers - not just one care site or a specialist. The result? Relevant and reliable patient-centric data poised to support real-world evidence-generation programs.
Patient-centric data is poised to support RWE generation programs through all development and launch stages. Today, while there are more RWD sources than ever, LS companies face the challenge of finding fit-for-use data that meet their specific needs.
The value of RWE—spanning clinical development, market access, reimbursement, surveillance, and sustained/expanded value demonstration—can be realized for all therapeutic areas; however, patient-centric RWD are especially conducive to accelerating neurodegeneration research.
First, there is more to the neurodegenerative story than what is captured by routinely collected data. Despite serving functional administrative purposes, these sources often miss critical information on what is covered in-clinic and practical details between clinic visits. Moreover, we know that neuropathological change (or what is happening at the cellular level) does not always equate to clinical significance (or a noticeable effect on a patient’s daily life).
Second, people experiencing neurodegenerative disease can experience various clinical symptoms and complications that require a range of care provided by different specialists. Accordingly, the RWD characterizing these complex care pathways spans many treatment sites and specialists. Bringing together data from separate, siloed sources begins with the patient—both in terms of the initial consent and the critical information that can only come from cognitive, functional, and patient-reported measures.
Third, for these neurodegenerative disorders, which are characterized by progressive degeneration, the role of the care partner is paramount. While most traditional RWD sources cannot integrate data beyond the individual patient, direct-to-patient channels are a novel exception that can extend to care partners. Not only does care partner data provide valuable information on patient outcomes, but it also helps to minimize the burden placed on patients to recall/document important events, experiences, or outcomes.
PicnicHealth's patient-centric, patient-first approach results in an expansive capture of historical longitudinal data on the neurodegenerative patient’s journey, even years before diagnosis. By starting with patient consent, we’re empowering patients and care partners to own their data and contribute to research, while enabling long-term engagement prospectively through their treatment. We also know that not all patients with neurodegenerative diseases experience the same care journey. By capturing hundreds to thousands of unique patient journeys, researchers can derive valuable insights from analyzing the constellation of their clinical features. Patient-centric RWD collection means better data, and it’s changing the game for neurodegeneration evidence.
Find out how PicnicHealth’s patient cohorts can help power your research. Contact us
Webinar: Cutting Edge Conversations: Fighting Neurodegenerative Diseases
Infographic: Resolving challenges in data completeness with machines and humans
Article: Comparing PicnicHealth data with existing research databases
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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