How is participating in a PicnicHealth study different from a traditional clinical trial?
How is participating in a PicnicHealth study different from a traditional clinical trial?
the PicnicHealth Team
May 31, 2023
Blog post originally written by the AllStripes community team. AllStripes was acquired by PicnicHealth in 2023.
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.
*Unlike other EHR systems, PicnicHealth consolidates medical records from multiple sources, including healthcare providers who use different EHR systems.
**If you’re interested in participating in a clinical trial, you can search for ongoing trials that are recruiting participants using resources such as ClinicalTrials.gov, which is a registry of clinical trials conducted in the United States and other countries. Before participating in a clinical trial, it's important to speak with your healthcare provider and carefully review the study's requirements and potential risks and benefits.
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.
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.
Learn more about PicnicHealth’s commitment to the Alzheimer’s community and the Alzheimer’s Association
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. 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.
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. 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.
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. 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.
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.
Tip: Download or print the poster at the end of this article to review before your next appointment!
However, it's important to consult with a healthcare provider or registered dietitian to determine the appropriate amount of protein for your individual needs. In general, a diet with moderate protein intake (about 0.8 grams per kilogram of body weight per day) is recommended for people with kidney diseases.
Learn more about contributing to IgAN research with PicnicHealth.