Collaboration with non-profit organizations plays a major role in clinical research, and to learn more, I sat down with Joan Chambers to understand Greater Gift’s purpose. Joan is the CEO of Greater Gift, a non-profit organization dedicated to celebrating clinical trial participants and everyone involved in clinical research and advancing community awareness, trust, diversity, and engagement in clinical trials as a care option.
Greater Gift’s Approach to Partnerships in Clinical Research
In clinical research, various forms of partnerships play a crucial role in progressing the development of drugs and therapies to improve patient outcomes. Partnerships can take many forms; academic & industry, public & private, patient advocacy, government, cross-sector, and non-profits.
“We (Greater Gift) work hard to foster solid relationships based on mutual trust, open communication, and common goals. We actively seek relationships with community groups and leaders to ensure that the general clinical research awareness information we share is well-received, inclusive, and meets community needs. Greater Gift's purpose is to raise clinical research awareness, restore trust in communities, and acknowledge everyone’s contribution by giving back to the community.”
Joan continues, “We've worked together with non-profit groups focused on certain diseases or patient demographics to name a few examples of successful cooperation. By including community organizations and leaders in the process, we get vital insights and comments that allow us to adjust our community readiness, outreach, and engagement programs to better suit the needs and circumstances of the patients and community members engaged.”
“These collaborations with non-profit organizations and community leaders have proven to be beneficial in raising general clinical research awareness, restoring community trust, communicating the message that clinical research is a viable healthcare option, and improving treatment access. We value these collaborations and remain committed to building strong relationships that improve clinical research while also recognizing and celebrating everyone involved.”
Partnerships to Enhance Patient-Centered Research
Incorporating the patient's perspective into clinical research, planning, and execution is vital as it ensures research is patient-centered, improves treatment outcomes, and enhances patient satisfaction. Patient insights inform study design, recruitment strategies, and outcomes assessment, leading to more relevant and meaningful research that addresses real-world patient needs and preferences.
“Non-profit groups are critical in terms of patient advocacy and involvement, as they work to reestablish community trust and overcome health literacy challenges. Collaboration is essential for properly incorporating patient opinions,” comments Joan.
Non-profit organizations often play a vital role in the community and are known to increase awareness and engage patients. “These community readiness, outreach, and engagement programs seek to increase health literacy, empower people, and reduce healthcare disparities. Non-profit organizations, such as Greater Gift, can tailor their efforts to the specific needs and cultural settings of the community by collaborating with community leaders, grassroots organizations, and providers of health care. This method makes it easier to incorporate patient viewpoints into program design and implementation, resulting in more effective and patient-centered interventions.”
Non-profits also frequently work with healthcare professionals and researchers to create programs that actively engage patients and/or care partners in the study process… “For example, non-profits may form patient advisory boards where people with lived experience can share their opinions and insights. These boards ensure that the patient’s voice is heard and considered during the research initiative's planning, execution, and assessment stages.”
“The Patient-Centered Outcomes Research Institute (PCORI) in the United States is one example of a successful partnership strategy. PCORI involves patients and other stakeholders in research priority, study design, and dissemination of findings. Patient perspectives are effectively integrated into the research process as a result of their participation, resulting in outputs that have a direct impact on patient care and decision-making.”
References & Context
Joan attended and participated in a panel discussion at COG New England, organised by Pharmaceutical Business Conference Group in April 2023.
Greater Gift is a non-profit organization dedicated to celebrating clinical trial participants and everyone involved in clinical research and advancing community awareness, trust, diversity, and engagement in clinical trials as a care option. More information can be found here: https://www.greatergift.org/
** Disclaimer: the views shared here are authors alone, and not of the Pharmaceutical Business Conference Group, Greater Gift or any other organisations mentioned **