Your Pregnancy Matters
Crowdsourcing: Can it help get women through pregnancy?
February 27, 2018
In early February, I attended the annual meeting of the Society for Maternal-Fetal Medicine here in Dallas. High-risk pregnancy doctors from all over the world came to learn about new and exciting research on a variety of topics, such as:
- The ARRIVE trial about induction of labor
- Medications that might reduce the risk of postpartum bleeding
- Potential techniques to reduce fetal damage from a certain viral infection
While research on high-risk pregnancy is robust, data is sadly lacking on the long-term body and other changes associated with what we consider to be healthy pregnancies. Most studies focus on a specific disease or complication, such as preeclampsia or alcohol consumption. And many women equate the words “research study” with being a guinea pig or an experimental subject observed while undergoing medical treatment.
Of course, pregnancy isn’t a disease, and “research studies” can be anything from a survey to monitoring patients for many years. Regardless, the fact is that we simply don’t know enough about healthy pregnancy to anticipate, counsel, or prevent certain patient experiences.
Because of this gap in research, we’re starting to see more research institutions take a patient-centered approach. One example is PregSource®, a crowdsourcing research project launched in November 2017 by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD). PregSource takes a unique approach to learning more about pregnancy by going directly to the source: pregnant women.
After the conference, I interviewed Caroline Signore, M.D., M.P.H., the principal investigator of PregSource, to learn more about this interesting study and how it might benefit pregnant women for years to come. I invite you to check out our discussion below.
Q1: What is PregSource?
A1: PregSource is both a research database and a resource for pregnant women to browse information and compare their experiences with anonymized data from other participants. All data is completely self-reported by participants. We’ve found that anonymity provides more opportunity for participants to be truthful about potentially negative topics, such as smoking or alcohol use, than if they’re asked face-to-face by a researcher or health care provider.
NICHD based PregSource on a crowdsourced, patient-centered approach. As with many health conditions, going straight to the patient is the best way to figure out what an experience entails, but surprisingly few pregnancy studies gather data from pregnant women directly. By learning from those who are living the experience, we can develop better standards of care and potentially identify ways to prevent certain complications in the future. We also partner with more than 20 organizations that offer information to participants, including the American Academy of Pediatrics and the American Colleges of Obstetricians and Gynecologists.
Q2: Who can join the study?
A2: Any pregnant woman can join at any time during her pregnancy, from the moment she gets a positive result on a pregnancy test all the way to the final week of gestation.
As of February 2018, we have around 400 participants. We have lofty goals – we’d eventually like to have thousands or even tens of thousands of women enrolled – because more women means more data. We plan to add to the platform so that women will be able to use PregSource after their pregnancies to monitor their health and their babies’ health for up to 3 years. We also have a long-term goal of allowing for sequential pregnancies to be recorded as well so we and other women can learn about body changes after multiple pregnancies.
Q3: What data does PregSource collect?
A3: Through the secure online platform, women answer questions about their general health, as well as more focused questions to chart pregnancy-related changes in their:
- Exercise or physical activity
PregSource also reaches out to participants monthly to offer links to additional online surveys about the pregnancy experiences, symptoms, and any complications. That’s it! No additional lab work or visits. Just answering questions on how they’re feeling and what they might be going through.
So often in pregnancy, women wonder if what they’re going through is normal. PregSource allows participants to access anonymized data to compare their answers with those of other pregnant women in the study. For example, a woman can answer a question about whether she experienced morning sickness during her pregnancy, then see how many women answered yes or no to the same question. PregSource data can give women peace of mind or spur them to action based on the experiences of other women.
Q4: Who can see the data?
A4: Participants and certain NICHD PregSource researchers can access the anonymized database. Only a few qualified and approved researchers can access the raw data. PregSource will never share any personal data with outside organizations without a participant’s express consent. However, women do have the option to let PregSource contact them about other research opportunities.
Q5: What is the ultimate goal of PregSource?
A5: Too often in pregnancy, providers tell patients what they should know instead of asking what they want or need to know. PregSource is a 180-degree difference. Our goal is to learn as much as we can from pregnant women while simultaneously providing information that is relevant to them. As we continue to learn more, we hope one day we’ll be able to better predict and even prevent long-term, pregnancy-related changes to women’s bodies and overall health.
Q6. How can women sign up?
A6: Women can learn more and sign up online at PregSource.nih.gov. Each participant signs an informed consent form that covers the scope of the study, how data are collected, and how the data are used.