John Marquette, a 59-year old retired librarian, spent most of his adult life in Southern California where he received all his medical care from one provider, Kaiser Permanente. This meant that all his medical records were saved in the same network and managed by Epic, an electronic medical records system.
After John retired in 2010, he moved to Pennsylvania and out of the Kaiser Permanente network. Not long after the move, John was diagnosed with an irregular heartbeat and began to have issues with his vision. “At age 59, things don’t work the way they did when I was 27.”
John believes strongly in finding the right doctor, someone he feels comfortable with who can give him the best care. After meeting with several new doctors, John’s medical records were scattered among physicians that didn’t have a standard system in place to communicate with one another. “My vision needs are addressed by an ophthalmologist who is not in Epic’s system and an associated optometrist who is also not in their system.”
John also travels frequently: he spends a month in Italy every 12 - 18 months. A few years ago, he needed to see a physician in Italy. John had to carry his existing medical records with him to Italy and then had the Italian physician's office print his new records so he would have copies in the US. It worked, but it was not an efficient process. John realized he needed to figure out how to better coordinate care among all his new providers himself.
Requesting and transferring his historical medical records from Kaiser Permanente was not an easy process. “I had a few records,” he recalls, “And my local health system, Lehigh Valley Health Network, was in the process of converting from its legacy system to Epic, but it didn’t seem to be working for me. My local health system just couldn’t easily go back to Kaiser. I had to fetch everything myself.”
John read about PicnicHealth on TechCrunch and immediately saw that it met his need for an autonomous service that could help him collect and track his historical medical data. As a retired librarian, John understands the value of having information at hand. “Information is data that has value associated with it. I need information about my medical care to make sure that I can stay healthy.”
John has found PicnicHealth to be a highly useful tool in staying on top of his health history. “PicnicHealth is very helpful. I can now make sure that I have an understanding of what’s going on when I go to doctors. I can be sure I have all my information ready. For me it’s about peace of mind.”
In addition, John has been impressed by how PicnicHealth presents his medical data, especially his bloodwork and prostate information. “When PicnicHealth began the process of acquiring medical records from all of my providers, I noticed they were doing stuff that even Kaiser and Epic weren’t doing. PicnicHealth provides me with a far more helpful way of looking at my medical lab tests over time. I had never seen my data presented in such an easily understandable format. When I’ve shown my timeline to other people, they’re surprised. They don’t realize how straightforward medical records can be if they’re well presented.”
"People don’t realize how straightforward medical records can be if they’re well presented."
According to John, Kaiser and Epic provided him with his test results information in a more scattered manner: “A little from here, from there. And then nothing when I left their system.” (It has been about 4 - 5 years since John was last seen at Kaiser.) “The way PicnicHealth displays my medical information presents a better picture of who I am over time rather than just a snapshot.”
John would recommend PicnicHealth to “escapees”: those who have retired, sold their places, and now travel around the country. “If you are receiving health care in several different parts of the country,” he notes, “PicnicHealth is the single thing that will keep everything in one spot.”
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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)
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Explore the essential takeaways from Victoria's Webinar, along with some resources that she shared.
