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Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.
When we asked participants in our research programs about the pandemic’s impact on healthcare experiences, 731 responded, representing 50 rare conditions. These survey results present both stark reminders of how difficult the pandemic has been and glimmers of hope around improved access to care for the rare community.
“We wanted to know more about whether telehealth could be a viable alternative to in-person care for rare communities,” explains Ashley Leek, PhD, and Scientific Affairs Manager at AllStripes, who designed the survey. “Accessing expert care is especially difficult when patients are dispersed throughout the country and experts only exist in a few locations. If telehealth was widely available, would access to experts increase without the additional travel burden?”
Nearly 25% said fears of the virus prevented you from seeking medical care.
When asked about having to cancel or reschedule in-patient care from a provider, 60% said yes.
37% had trouble accessing therapies, medications and/or treatments during shutdowns.
About 67% answered “often” or “always” when asked whether telehealth appointments met expectations. About 9.2% answered “never” or “rarely.”
About 80% attended a telehealth care appointment during the pandemic.
When asked about the desire for ongoing telehealth appointments about 56% answered “yes, but only for some types of appointments.”
We know the rare disease community is made up of some of the busiest people in the world, and we're grateful to all who took the time to share.
Interested in reading more about the original research we’re conducting with AllStripes data? Check out our Research insights page.
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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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Explore the essential takeaways from Victoria's Webinar, along with some resources that she shared.
