How is participating in a PicnicHealth study different from a traditional clinical trial?

By the PicnicHealth Team
May 31, 2023 • 3 min read

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.

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

Join our early breast cancer registry to be counted and share your story with research.

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.