Patient organizations are playing a crucial role in the US healthcare system, contributing billions of dollars in grants to support patient services, research, and access to care. In this article, we will explore the role and profile of patient organizations, their collaborations with life sciences companies, and their involvement in clinical development. Join us as we delve into the impact of patient organizations and how they are driving positive change in healthcare.
The Role and Profile of Patient Organizations in the US
Explore the evolving role and profile of patient organizations in the US healthcare system and their impact on research and patient care.
Patient organizations in the US have become key players in the healthcare ecosystem, with over 3,000 active organizations and more than 1,000 created in the past decade. These organizations have expanded their disease and mission focus, with nearly 600 of them focusing on rare diseases.
Aside from advocating for patients and funding scientific research, patient organizations have taken on more complex roles. They now support patients in sophisticated ways, such as building patient registries and becoming custodians of data for their communities.
By building their own patient registries, patient organizations are contributing to the advancement of research and addressing unmet needs in specific diseases. This positions them as the fulcrum for positive change in healthcare.
Collaborations Between Patient Organizations and Life Sciences Companies
Discover the constructive initiatives and challenges that arise from collaborations between patient organizations and life sciences companies.
Patient organizations and life sciences companies have found common ground for collaboration when their missions align. These collaborations focus on understanding diseases, improving outcomes through the development and use of medicines, and strengthening patient communities through education and advocacy.
The 21st Century Cures Act of 2016 has further expanded the role of patient organizations as partners to life sciences companies. This act encourages the incorporation of patient views in drug development, making patient organizations valuable contributors to the process.
While fruitful, these collaborations also present challenges. Patient organizations must navigate the complexities of working with life sciences companies while ensuring the best interests of patients are represented.
Patient Organizations' Involvement in Clinical Development
Learn how patient organizations are playing a collaborative role in clinical development, including trial design, recruitment, and the use of patient-reported outcome measures.
The involvement of patient organizations in clinical development has been facilitated by FDA guidance on patient-focused drug development and real-world data. This has opened up new opportunities for patient organizations to contribute to the pursuit of new treatments and cures.
One area where patient organizations make a significant impact is the use of patient-reported outcome measures in clinical trials. As many as 27% of Phase III oncology clinical trials in 2019 included these measures, reflecting the growing importance of patient perspectives in evaluating treatment efficacy.
Patient organizations also collaborate with life sciences companies to create novel measures that better reflect disease symptoms and the improvements patients value in their quality of life.
Conclusion
Patient organizations have emerged as crucial contributors to the US healthcare system, providing funding for research, supporting patients in innovative ways, and driving positive change. With their expanding role and profile, patient organizations are advancing research, addressing unmet needs, and promoting diversity and inclusion in clinical development.
FQA :
What is the role of patient organizations in the US healthcare system?
Patient organizations play a vital role in the US healthcare system by advocating for patients' interests, funding scientific research, and supporting patients in complex and sophisticated ways. They have become the fulcrum for positive change in healthcare.
How do patient organizations collaborate with life sciences companies?
Patient organizations collaborate with life sciences companies in areas such as understanding diseases, improving outcomes through the development and use of medicines, and strengthening patient communities through education and advocacy. These collaborations have expanded with the regulatory changes brought by the 21st Century Cures Act, which encourages the incorporation of patient views in drug development.
What is the involvement of patient organizations in clinical development?
Patient organizations are actively involved in clinical development, contributing to trial design, recruitment, and the use of patient-reported outcome measures. They work together with life sciences companies to create novel measures that better reflect disease symptoms and the improvements patients value in their quality of life.
