The HAEA was showcased for the first time at a national Research Community Forum sponsored by Hartford HealthCare and the Office for Human Research Protections (OHRP), on October 25-26th in Hartford , CT. The conference entitled: “Foundations of Trust: Connecting Our Community to Research” focused on the ethical issues of engaging community participation in research. John Williamson, who serves as Senior Patient Advocate and Clinical Trials Referral Liaison, was invited to speak about what the HAEA is doing to empower and educate patients with HAE. He demonstrated how this advocacy work has fostered trust within the HAE community to work together towards shared research goals. John Williamson and Christine Selva also hosted an exhibit table to further showcase the tools and resources the HAEA is currently using for patient empowerment. Pamela Johnson (an employee of Hartford HealthCare and a patient with HAE), moderated a panel of patients that discussed why patients decide to participate in research, barriers to participation, concerns about consent, and what patients can do to get more informed and more involved. She also shared her story about participating in clinical trials as a child with HAE.
OHRP provides leadership in the protection of the rights, welfare, and wellbeing of human subjects involved in research conducted or supported by the U.S. Department of Health and Human Services (HHS). OHRP is part of the Office of the Assistant Secretary for Health in the Office of the Secretary of HHS. This was tremendous opportunity to work with our Federal partners and to gain exposure for the HAE community.