How PicnicHealth is supporting more inclusive research on MS
How PicnicHealth is supporting more inclusive research on MS
By
Meghan Brown
Oct 09, 2020 • 3 min read
PicnicHealth is proud to partner with WeAreILL to empower women of color living with MS to get better access to their medical records and to contribute to research on their terms. Together we are developing resources that are meaningful to the community and might change the experiences and health of women of color living with MS.
Our goal is to empower the multiple sclerosis community with ownership of their full medical histories, including neurology records and MRIs. FlywheelMS is PicnicHealth’s novel patient-centered study that empowers the entire community of MS patients to volunteer at the click of a button. PicnicHealth does the legwork to collect the medical records of thousands of MS patients without extra trials, treatments, or drugs.
PicnicHealth organizes and anonymizes elements from medical records like infusion dates, narrative text, and outcomes. When PicnicHealth combines these elements in thousands of MS patients’ records, stories and patterns emerge to help researchers answer key scientific questions.
WeAreILL was founded originally as a social media campaign called #WeAreILLmatic to support Black women living with MS. With unfair stigma attached to MS, especially in minority communities, WeAreILL was created to give those individuals the power to not live in shame. As a result of the campaign, #WeAreILLmatic created a network of more than a thousand women of color from around the world fighting the disease and transformed into the pending nonprofit organization WeAreILL.
WeAreILL now supports women of color living with MS through a social media network, political and social advocacy, educational programming, and support groups. They call attention to and unite Black women battling MS and inspire those women to live healthier and fuller lives. WeAreILL also serves as a thought-leader in the MS, invisible illness, and wellness space. By changing the narrative of MS and improving the health outcomes of Black women, WeAreILL not only gives the forgotten MS warriors a space to share their stories, but the organization hopes to help better fight the disease.
Learn more and sign up for PicnicHealth at Flywheel.MS. FlywheelMS is open to anyone, of any gender or ethnicity, diagnosed with MS and living in the US.
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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.
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.
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)