When you are starting out in clinical research and lack a mentor with access to database resources, finding datasets can be challenging. Most people resort to systematic reviews and meta-analyses. However, a well-done systematic review can be incredibly time-consuming. In contrast, conducting research using publicly available or open-access data sources can be a more efficient path. Not only does it save time, but it also allows you to make meaningful contributions to medical science, significantly boosting your resume.

In this post, we’ll explore how to leverage these resources effectively, helping you build your authority and make impactful contributions in the field of clinical research.

Public Database Examples

Here are 6 public databases you can right now:

1. National Health and Nutrition Examination Survey (NHANES)

NHANES collects data on the health and nutritional status of adults and children in the U.S. It includes health-related surveys, physical examinations, and limited lab results. The NHANES interview covers demographic, socioeconomic, dietary, and health-related questions. The examination component consists of medical, dental, and physiological measurements, and laboratory tests administered by highly trained medical personnel.

Access: Completely free through this CDC website.

2. Healthcare Cost & Utilization Project (HCUP) Databases

HCUP offers a long list of databases from community hospitals, including:

• National (Nationwide) Inpatient Sample (NIS)
• Kids’ Inpatient Database (KID)
• Nationwide Emergency Department Sample (NEDS)
• Nationwide Readmissions Database
• State Inpatient Databases (SID)
• State Ambulatory Surgery and Services Databases (SASD)
• State Emergency Department Databases (SEDD)

Access is not completely free but the cost is nominal for students or trainees. You can access the databases via the HCUP website. I extensively used the NIS while I was a resident. It is great for examining disease trends over time. It is cross-sectional, so the ability to examine outcomes is limited. Any of the HCUP databases can be great starting points and provide hands-on experience with data analysis.

3. Surveillance, Epidemiology, and End Results (SEER) Program

The SEER program offers cancer statistics to reduce the cancer burden among the U.S. population. It collects data on cancer cases from various locations and sources. It is great for examining cancer trends and outcomes.

Access: Publicly available through the National Cancer Institute (NCI) website.

4. FDA Database

The FDA has several public databases accessible here. Among them, the FDA Adverse Event Reporting System (FAERS) is frequently used by researchers to query adverse drug effects. FAERS data can be obtained from the FAERS dashboard or FAERS data files.

Access: Publicly available through the FDA website.

5. All of Us – NIH

The All of Us Research Program is the NIH’s effort to collect and study data from one million or more people living in the US to improve health for all of us. The centralized, secure, cloud-based platform allows researchers to execute rapid, hypothesis-driven research with just a computer and an Internet connection. You can either use R or Python for data analysis on their cloud-based platform.

Access: You need to be part of a US institution that is part of their network. You can register for access at https://www.researchallofus.org/. There is a time-based charge for using their platform for analysis, but it is very affordable.

6. Clinical Trial Databases

Subgroup analyses, post-hoc analyses, or individual patient meta-analyses can be conducted using clinical trial data that are available on request. The limitation is that a single platform might not have partnered with all industry partners. Therefore, access to the number of studies with each of the platforms might be limited. I have personally used Vivli, and it is a relatively easy platform to navigate. However, the data-sharing agreements can take time, so plan accordingly.

Access: Varies by database; generally requires an application via platforms such as:

• Critical Path Initiative
• TransCelerate Biopharma INC
• Yale YODA Project
• Vivli
• Supporting Open Access for Researchers initiative (SOAR)
• Clinical Study Data Request

Practical Steps for Maximizing the Potential of These Databases

1. Find a Good Research Question: Start with a solid research question, not picking a database first. If you are struggling with this, use our custom GPT tool to distill your research ideas.
2. Identify Relevant Databases: Choose databases that align with your research questions and objectives. Modify your research question according to the available variables in the dataset.
3. Understand Access Requirements: Some databases are publicly available, while others may require a small application fee. For example, NIS data costs about $100 for recent years and less for older data.
4. Adhere to Ethical Guidelines: Ensure compliance with data use agreements and ethical standards.

In summary, open-access databases have their limitations and often are not as robust. But you can use their unique strengths (often large numbers, great to examine disease trends) to craft a good research publication. This is especially helpful when you are starting out and do not necessarily have access to resources yet (definitely the case for me in the early days of research).

This Week’s Action Step

1. Explore the Databases: Visit the websites of the databases listed above and familiarize yourself with the type of data they offer.
2. Select a Database: Choose one database that aligns with your current research interest and start exploring the data available.

That’s it for today. See you next week!