PicnicHealth's mission is to put people in control of their complete medical records and, in doing so, advance medical research.
To fulfill that mission, we’re proud to support communities working toward many of the same goals. The sickle cell community is an example of many organizations and individuals working to further disease research and quality of life.
These are just a few of the ways we’re involved with the sickle cell community:
PicnicHealth partners with organizations like Sickle Cell 101, the MTS Foundation, and Jasper House Warriors. These organizations provide services from advocacy to mentorship to crisis hotlines for patients and families affected by sickle cell disease. By partnering with organizations like these, we’re able to better reach more people with sickle cell and provide free access to medical record management when they donate their anonymous data to research.
Access to PicnicHealth not only simplifies the process of managing sickle cell day-to-day, it can also help empower patients with more control over their medical care–which brings us to our next point.
Many PicnicHealth users say one of the benefits of the platform is taking control of their own health. Knowing you have access to your entire medical history provides peace of mind and security, and allows patients to play a larger role in their own care. Having access to your complete medical records can ensure that your doctors always have a full view of your medical history. This can be especially critical in case of emergency, such as when going to the hospital during a pain crisis.
Perhaps the biggest impact PicnicHealth makes on the sickle cell community is its contributions to medical research. By giving people with sickle cell a way to securely and anonymously share data on their history, PicnicHealth directly supports research to improve treatments. Our platform provides critical data to improve the lives and medical experience of sickle cell patients, whether they use the PicnicHealth platform or not.
Our goal for sickle cell disease, and all chronic illnesses, is to make the journey a little bit easier. We’ll continue to find ways we can partner with organizations and individuals as we work to do that.
Interested in contributing to our cause? Sign up for PicnicHealth—it’s free for people living with sickle cell and takes just 5 minutes. If you want to partner with us, email us at [email protected].
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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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.
