How Real Patient Experiences Can Make a Difference in the Fight Against Alzheimer’s

By
the PicnicHealth team

Jan 06, 2022 • 4 min read

It’s an exciting time for Alzheimer’s disease research. The FDA approved the first new drug for Alzheimer’s in nearly 20 years in June 2021, and other potential treatments, targeting amyloid plaques in the brain, are making their way through clinical trials. It’s a glimmer of hope for Alzheimer’s patients, who number over 6 million in the U.S. alone.

Yet, it’s just the beginning. The novel therapies might not work for everyone, and a lot more work needs to be done. While randomized controlled trials remain a gold standard of advancing science, there’s another piece that’s essential to solving the Alzheimer’s research puzzle: real-world evidence.

Real-world evidence (RWE) takes data collected from the real world, outside of clinical trials, and uses it to assess patient outcomes. RWE for Alzheimer’s asks, What happens over a patient’s care journey? What works for different patients? Questions like these broaden our understanding of the day-to-day challenges of living with Alzheimer’s—and they’re key to paving the way to new advances and discoveries.

Today, reams of patient data are collected through electronic health records. It’s a potential gold mine of information for researchers, but RWE can only work its magic if patients share their data.

PicnicHealth offers a safe, secure, and easy way for real patients, in the real world, to share their medical records and be a part of the new wave of science. It takes just minutes to sign up, and when you do, your data is de-identified before it’s shared with researchers. You get something out of the bargain, too: access to your medical records, organized in a single timeline and accessible in one click.

Even better, RWE gives you the gratification of knowing that you’re contributing to vital research, almost effortlessly. It’s a chance to make your voice heard and move the needle on science. What if you were the missing link to the next Alzheimer’s breakthrough?

1. FDA Website. FDA’s Decision to Approve New Treatment for Alzheimer’s Disease. Accessed Nov. 17, 2021.
2. More Alzheimer’s drugs head for FDA review: what scientists are watching. Nature. Nov. 15, 2021. Accessed Nov. 17, 2021.
3. Alzheimer’s Association Website. 2021 Alzheimer’s Disease Facts and Figures. Accessed Nov. 17, 2021.

We know that every person's story is unique and deserves to be heard.

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.

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.

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. 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.

Data from real-world medical records:

• 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:

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We hope you found this session informative! Sign up for PicnicHealth’s Alzheimer’s research program below.

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Learn more about contributing to IgAN research with PicnicHealth.