Why is there a lack of trust when it comes to clinical trials? 

Many liver patients are hesitant to participate in clinical trials due to concerns about privacy and data security. Past ethical violations in medical research have contributed to distrust, particularly among underserved communities. Notable historical cases, such as the Tuskegee Syphilis Study, have led to lingering fears about exploitation and lack of informed consent. Additionally, some patients worry about being treated as test subjects rather than individuals receiving care. It is essential to acknowledge these concerns and understand how your personal information is protected.

How is my personal data protected and kept confidential? 

Clinical trials follow strict protocols to protect patient data. Participants' personal information is anonymized whenever possible, meaning identifying details are removed or replaced with codes. Only authorized personnel can access identifiable information, and all data is stored in secure systems with encryption to prevent unauthorized access. Researchers are required to follow regulatory guidelines to maintain confidentiality. Institutions conducting clinical trials also have Institutional Review Boards (IRBs) that oversee studies to ensure ethical data handling. 

What is HIPAA? 

The Health Insurance Portability and Accountability Act (HIPAA) sets national standards for protecting sensitive health information. Under HIPAA, clinical trial investigators must obtain patient consent before sharing health data. This law ensures that participants have control over who can access their medical information and how it is used. HIPAA compliance requires organizations to implement strict security measures, such as encryption, access controls, and audit logs to prevent unauthorized data breaches. 

How is trial data shared and used for future research? 

Data collected from clinical trials may be used for future medical research to improve treatments and patient outcomes. In most cases, this information is de-identified, meaning it cannot be traced back to individual participants. Researchers may share anonymized data with regulatory agencies, healthcare institutions, and academic organizations to advance scientific knowledge. Before enrolling, patients should ask how their data will be used and whether they can opt out of future data sharing. Some trials may also involve biobanking, where biological samples are stored for future research, so patients should inquire about any additional consent requirements.

How can I build more confidence in clinical trials? 

Having open communication with the research team about data privacy and security is crucial for building trust and transparency. Liver patients considering participation should be encouraged to ask questions, review consent forms carefully, and understand their rights regarding data use. Patients can ask about the specific safeguards in place to protect their privacy before enrolling in a study. Click here to access our printable guide with a list of important questions you may want to ask the research team. Engaging with patient advocacy groups, attending informational sessions, and speaking with past trial participants can provide additional reassurance. 

Is a clinical trial right for me?
Every trial has specific eligibility criteria. Speak with your doctor and the clinical study team to determine if joining aligns with your health needs and lifestyle. Our Guide can help you ask important questions before signing up. Your decision to join is entirely voluntary, and you can withdraw at any time.

How can I find a clinical trial near me?

The Wellness League's Search Tool is a free resource that can be used to find clinical trials actively recruiting in your community. Simply search by a condition and then the type of study. Check out our blog on how to use the Tool. Scroll to the bottom of the page to watch our how-to video or download the printable guide.