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Two studies using PicnicHealth hemophilia data to be presented at ASH 2021 Annual Meeting

The American Society of Hematology (ASH) recently accepted two of our abstracts for the upcoming 63rd ASH Annual Meeting, which will be held December 11-14, 2021. Both abstracts explore data from the PicnicHealth Hemophilia Cohort and are published in partnership with Roche-Genentech and key opinion leaders in the hemophilia space, Mark Skinner (McMaster University, ON, Canada), Michelle Witkop (National Hemophilia Foundation, NY, NY) and Amy Shapiro (Indiana Hemophilia and Thrombosis Center, IN). The first abstract describes PicnicHealth’s novel methodology for building patient-centric, real-world datasets and has been accepted for an oral presentation. The second abstract builds on the methodology abstract to characterize patients with mild to moderate hemophilia A - a group historically underrepresented in scientific literature.


Abstract #594: A Novel Methodology for Building Longitudinal, Patient-Centric Real World Datasets in Hemophilia A

This abstract reviews our innovative patient-centered approach to building longitudinal datasets, which avoids data gaps common in other datasets. For example, claims data is confined to billing codes, and registries are incredibly resource intensive to stand up. The study points to the high-quality nature of PicnicHealth’s data abstraction, the volume of medical record data collected and PicnicHealth’s ability to directly engage patients to go even beyond what’s available in the record. A measure of high-quality abstraction, PicnicHealth’s inter-abstractor agreement scores are consistently above 95% for any data type. In terms of volume of data, a median of 50 clinical documents from 11 years were processed for each patient in this cohort. Finally, this dataset is being supplemented with patient-reported outcomes (PROs), which patients respond to biweekly and share information about their bleeds. As of June 2021, the average PRO response rate was 90.3%. These results highlight not only the quality of the PicnicHealth data in hemophilia A, but also confirm the validity of our novel approach to building real-world datasets.


Abstract #2107: Characterizing Mild and Moderate Hemophilia A Patients in the Real World: A Patient-Centric Approach

This abstract applies our overall approach to characterize patients with mild to moderate Hemophilia A. Because these patients are a historically underrepresented group in scientific literature, it is especially important to study mild to moderate hemophilia A in the real-world context to truly understand the patient population, disease burden and healthcare resource utilization. The study’s results highlight a few things: (1) the data suggests that males are diagnosed at a younger age, on average, than females and (2) patients ages 45 - 64 have more clinical (including inpatient and outpatient) visits than any other age group: 0-19, 20 - 44 and 65+. The study draws on these findings and others to conclude that the patients in the PicnicHealth cohort’s characteristics are generally comparable with the Center of Disease Control’s (CDC) data around age, BMI and ethnicity. This again confirms the strength of the PicnicHealth approach in building representative, longitudinal real-world datasets.


All ASH abstracts are available online at https://ash.confex.com/ash/2021/webprogram/start.html


About PicnicHealth’s Hemophilia Cohort. PicnicHealth has built a longitudinal real-world hemophilia data including hemophilia A and B patients with varying levels of disease severity (e.g., mild, moderate and severe). Novel data abstraction models were developed to uncover hard to obtain bleed events (e.g., spontaneous and traumatic), bleed location, and annual bleed rates from narrative text. Additionally, the dataset allows researchers to connect bleed events to patient symptoms, comorbidities, and treatments to help better characterize the complete patient experience. The cohort is available for license by life sciences partners and is currently helping researchers understand burden of disease in hemophilia B to support payer conversations for gene therapies under development; helping manufacturers demonstrate the feasibility of value-based agreements in support of upcoming gene therapy product launches; and being used to construct synthetic comparator arms for ongoing clinical studies. 


Contact a team member today to learn more about our real-world data research cohorts.

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.

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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