PicnicHealth Gives Back This Holiday Season 2022
PicnicHealth Gives Back this Holiday Season 2022
By
PicnicHealth Team
Nov 29, 2022 • 2 min read
PicnicHealth Gives Back has returned for another year! Every time a patient contributes to a PicnicHealth research study, PicnicHealth will donate to a patient advocacy group until December 31, 2022. We hope to provide some care and comfort during this holiday season through our amazing patient advocacy partners.
Our portfolio of real-world data research cohorts has grown to cover Alzheimer’s disease, Huntington’s disease, paroxysmal nocturnal hemoglobinuria, IgA Nephropathy (Berger’s Disease), myasthenia gravis, multiple sclerosis, and lupus nephritis.
Click here to learn more about each study and the organizations we are supporting.
PicnicHealth's Mission:
PicnicHealth is a patient-centered digital health company that is on a mission to make medical data work to improve patients’ lives. We are building toward a world where medical data lives up to its potential so that it can power patients and their providers to make the best decision for patient health and fuel research advances. We center on the patient and connect them with life science researchers, creating quality, deep real-world datasets that include the complete picture of patients’ healthcare journeys. Patients receive a PicnicHealth Timeline where they can access their complete medical records, organized in one place. Our Research Platform for Life Sciences provides researchers with anonymized and aggregated datasets designed to answer disease-specific research questions. By partnering with patients and researchers we hope to both empower patients to take ownership of their own medical information and help to accelerate breakthroughs in care.
We know that every person's story is unique and deserves to be heard.
Join our early breast cancer registry to be counted and share your story with research.
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
Together, we can make a difference.
Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association
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.
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)