Issues

Benefit-Risk

Patient perspectives on benefit-risk are vital to the structured assessment process across the lifecycle of developing drugs and devices. Learn more here about how to participate effectively in research and policy activities that can enhance patient-centered decision-making about medical products in development, under regulatory review, and on the market.

Collaboration

Given the complexity of science and the research process, collaboration among researchers, disciplines, and sectors is critical to successful innovation in disease research, and patient-driven foundations can serve as an ideal nexus for convening and coordinating efforts. Find information here about engaging and nurturing relationships with a wide range of partners that can accelerate the overall funding and research cycle.

Intellectual Property

Intellectual property (IP) is both a key enabler of medical innovation and an occasional roadblock slowing progress. Learn more about fostering productive dialogue among key stakeholders, best practices and basic assumptions that underpin the current system, innovative legal structures and licensing models that accelerate technology transfer, and emerging and hot-button issues in the world of life sciences IP.

Management and Accountability

Find information here to assist in your organization’s strategy, planning, and evaluation efforts.

Patient Engagement

Patients and patient groups are becoming more sophisticated about their role in the research system. How can policymakers, innovators, payers, and researchers take into account patient needs and preferences, patient-reported outcomes, and patients’ perceptions of risk and value in a meaningful way? Learn more here about models of effective patient engagement.

Regulatory Process

Learn more about the process behind regulators’ evaluation of new treatments and what can be done to improve their capacity and practices to support innovative drug development.

Research and Development System

Find resources that explain the medical R&D process and system, along with information about policies that impact the functioning of the R&D system.

Research Resources

Find information here about research resources such as registries, biobanks, clinical trials networks, data sharing platforms, and more.

Value and Coverage

A reimbursement environment that incentivizes innovation and ensures access to life-saving therapies is critical to patients. Explore the role medical research stakeholders, including patient groups, could and should play in providing a framework for an informed discussion about healthcare coverage decisions.

Venture Philanthropy

Gain a better understanding of what venture philanthropy is all about, the novel approaches an increasing number of patient foundations are taking to accelerate progress in their disease areas, and specific models from leading organizations.