Healthy Volunteers Alliance (HVA) was founded to address a long-standing problem in clinical research. Volunteers contribute enormously to medical progress, yet they often do so within a system that offers limited protections, unclear pathways for support, insufficient transparency, inconsistent accountability, and few safeguards against retaliation or meaningful participant representation. Healthy volunteers frequently have no independent voice advocating for their interests, despite playing an essential role in advancing medical research.
As a result, many volunteers remain silent, knowing that raising concerns could jeopardize their eligibility for future participation.
We carry out this mission by advocating for meaningful improvements in the systems, policies, and oversight structures that affect healthy volunteers in clinical research.
Our current priorities include promoting informed consent modernization, encouraging greater transparency and accountability in volunteer tracking systems, supporting stronger participant protections, improving pathways for anonymous reporting and third-party participant advocacy, raising awareness of arbitrary age-based exclusion and representation concerns, and encouraging thoughtful oversight of emerging technologies such as artificial intelligence in clinical research.
We also work to bring healthy volunteer perspectives into conversations that have historically occurred without direct participant representation. This includes communicating with federal oversight agencies, Institutional Review Boards (IRBs), accrediting organizations, research institutions, sponsors, and contract research organizations to raise awareness of participant concerns and encourage meaningful dialogue where gaps in transparency, accountability, or participant protections exist.
In addition, HVA documents systemic issues and shares participant-focused stories, concerns, and observations with media outlets and professional audiences to help increase public awareness of challenges facing healthy volunteers and the need for continued improvements within the research system.
We support these advocacy efforts through education and awareness, providing participant-focused information about clinical research, informed consent, eligibility requirements, study procedures, participant responsibilities, and the systems that affect the volunteer experience.
HVA also provides protected, confidential spaces where healthy volunteers can ask questions, share experiences, discuss concerns, participate in surveys, and connect with others who have firsthand experience in clinical research. This includes our moderated private Facebook group, Telegram chat group, and secure online reporting and contact options.
Participation may be anonymous when needed, and no identifying information is ever disclosed without explicit consent because volunteers should never have to choose between their safety, fairness, and their voice.
