Participation in research can take many forms. While connected by the common goals of advancing medical knowledge and improving patient outcomes, the experience of being involved in clinical trials and real-world data (RWD) research can look very different. When considering your options for participating in research, it's important to understand the differences between the two to support your decision-making.
A traditional clinical trial is a research study that tests a new medical treatment or intervention. Clinical trials typically involve recruiting a select number of participants who have a specific health condition and may require them to take a new medication, undergo a medical procedure, or make changes to their lifestyle. Clinical trials are designed to test the safety and efficacy (i.e., Does the treatment work?) of a new intervention, and often involve a control (comparison) group that receives a placebo or standard treatment.
RWD research, like that powered by PicnicHealth, is another example of how patients can participate in research, but in a much ‘lower-lift’ way. RWD studies are often designed to more passively observe the patient care journey and/or assess the effectiveness (i.e., Does the treatment work in real-world conditions?) of an intervention received as part of usual care.
PicnicHealth partners with leading health researchers to provide de-identified data from patients who have consented to participate in research studies. This type of research involves an easy sign-up process and much less restrictive inclusion criteria than a traditional clinical trial. Often, the only requirement is confirmation of a particular diagnosis that is identified through your medical records — moreover, no additional treatment, travel, or testing beyond your usual care.
Beyond ease of participation, a major motivator for patients joining PicnicHealth is the ability to receive a PicnicHealth Timeline, which allows patients to access and manage their medical information online.* Patients are able to view labs, imaging, doctor’s notes, and more from their PicnicHealth Timeline. They can also share it with their care team, including family, caregivers, and any providers or specialists.
Participating in PicnicHealth research is very different from a traditional clinical trial, but it’s important to note that these options are not mutually exclusive. Additionally, as clinical trials evolve and become more flexible in their design, there are emerging opportunities for patients to participate in trials remotely or in a hybrid way (i.e.both in-person and remote assessments). This will open the door to an even wider array of research participation approaches.
The Bottom Line: Contributing your data for research purposes can help advance medical knowledge, but this does not always involve actively testing a new intervention or treatment. There are many different options you can explore that allow you to support scientific advancement while maintaining ownership and governance over your health data.
If you're interested in participating in research through a PicnicHealth study, you can view our active studies here.
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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 MoreIf your loved one is in the early stages of Alzheimer’s, putting a support system together might not seem like priority #1. But it’s never too soon to build a network of people that you can turn to in times of need. Cultivate connections today with the people who can be there tomorrow, or whenever you might need a hand.
You may also want to connect with other Alzheimer’s caregivers through a support group, whether it meets 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 the world of Alzheimer’s.
If your loved one is in the early stages of Alzheimer’s, putting a support system together might not seem like priority #1. But it’s never too soon to build a network of people that you can turn to in times of need. Cultivate connections today with the people who can be there tomorrow, or whenever you might need a hand.
You may also want to connect with other Alzheimer’s caregivers through a support group, whether it meets 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 the world of Alzheimer’s.
It isn’t always easy to look into the future with Alzheimer’s—but doing the legwork now will save you from stress later. If your loved one is in the early stages of illness, you can involve them in conversations about legal, financial, and long-term care planning decisions. Despite the difficulty of these topics, you’ll all feel empowered by facing them early, and you can move ahead with greater confidence.
It’s an exciting time for Alzheimer’s research, with new treatments in development and coming to market. Ask your loved one’s doctors about therapies they can try or clinical trials they can join. One easy way to participate in research is to sign up at PicnicHealth, which helps to advance Alzheimer’s science by sharing participants’ anonymous health data with some of the brightest minds in research.
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 with Alzheimer’s. And don’t forget to keep a sense of humor along the way.
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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