Our Highest Priority: Engaging and Empowering Patients

At the FNIH we fundamentally believe in keeping patients at the center, that incorporating patient perspectives into our work will result in faster medical breakthroughs and the opportunity to improve patients’ lives. Integral to our patient engagement initiative, our patient voices must serve as the north star for the decisions we make across our many portfolios and priorities. 

Patints as Partners
On March 22, Drs. Julie Gerberding and Tania Kamphaus participated in a fireside chat discussing the importance of patient engagement at the 10th Annual Patients as Partners in Clinical Research Summit in Washington, DC.

In 2022, we commissioned an assessment of patient engagement across FNIH research programs and found that more than half of existing FNIH projects had strong engagement with patients and patient advocacy groups but needed a proactive framework and systematization. With our new Patient Engagement Initiative, we hope that end-to-end patient engagement will become the “new normal” for all our projects. The FNIH project staff is keen to implement these changes. Through the patient engagement initiative, they will have a systematic way of receiving guidance, engagement, and feedback from patients and patient leaders in designing and executing their programs. We are working actively to ensure that public recommendations are incorporated into this process.

Field research and our own experiences tell us that a study that incorporates and heavily weighs patient preferences, whether it be to design the study endpoints or its execution, results in treatments and care that are easier to implement and more readily accepted by the people for whom they are designed. With our new initiative, we aim to bring FNIH’s longstanding and unique expertise in cross-stakeholder management to amplify patient voices in all aspects of our work.

Today’s patients are more informed; they more frequently advocate with high expectations for their care. Sadly, in the wake of the COVID-19 pandemic, the evidence of misinformation and disinformation infusing public thinking has fostered a lack of trust in science and medicine. Earning this trust back is critical to providing better and sustained care to people. Being patient-centric in our approach, and involving patients early and often, is a “win-win” for everyone.

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