During the past five years, the American Society of Nephrology has seen significant membership growth. ASN now represents a more complete picture of the nephrology community, including a significant international presence and health professionals across many job roles and interest areas. To engage with this diverse membership, ASN has established a new member benefit: ASN Communities.
ASN Communities provide an online platform for discussion, networking, and collaboration among nephrologists around the world. Unveiled in March 2016, the Communities allow members to connect to each other, to the society, and to the broader kidney community. Every ASN member has access to
Urgency and innovation are frequent themes in the kidney community. The Kidney Health Initiative (KHI) holds an annual meeting to translate these themes into reality. A public-private partnership with the U.S. Food and Drug Administration (FDA) and over 90 companies and organizations from various stakeholder groups in the kidney community, KHI was established to spur innovation and enhance patient safety.
Patients took center stage at the 2018 KHI Stakeholders Meeting, held in Silver Spring, MD, May 14–15. Each session at the meeting included a patient or care partner who provided the patient perspective on the session topic. Their personal stories
ASN Kidney Week is unique among medical society gatherings for elevating the patient voice during the annual meeting. Accelerating innovation and discovery in the kidney disease space makes including the perspectives of people with kidney disease in scientific meetings and other forums essential. During the ASN Kidney Week Annual Meeting, more than 10 people with kidney disease gave talks on a variety of topics.
The foremost of the patient presentations was the Celeste Castillo Lee Memorial Lectureship, a rare example of a lecture endowed in the name of a patient and presented during a medical society meeting. Established in 2017,
2017 is drawing to a close, marking the end of a year that saw ASN Communities hit its stride within the nephrology social media landscape. Providing an interactive learning experience for nephrologists around the world has become the sites primary strength. Interacting on Communities reminds many practicing nephrologists of the iterative case conferences they had in residency. Both complicated and mundane discussions provide a springboard for nephrologists to finding their own answers and improving their own knowledge base.
What do Kidney Week and ASN Communities have in common? Even though one is online and the other in person, they are both destinations for kidney health professionals to discuss, network and collaborate around issues that are important to them. Kidney Week provides a physical context to build the relationships you have online.
Asking people with kidney failure what matters to them is critical for patient centered innovation. If that information can be collected in a scientifically rigorous way, it can inform industry and regulatory decision making.
The Kidney Health Initiative (KHI) is launching a new project in collaboration with the US Food and Drug Administration (FDA) to collect patient preference information on innovative renal replacement therapies (RRT). The three-year project, funded by the FDA, will produce a survey that captures scientifically valid patient preference and risk tolerance data from people with kidney failure to drive innovations in RRT. This information is increasingly important as innovation accelerates in the kidney community. The Advancing American Kidney Health initiative identified this need, directing the FDA to “develop a new survey to gain insight into patient preferences for new kidney failure treatments”.
To increase inclusivity and accessibility, the American Society of Nephrology (ASN) introduced a new member benefit in March 2016: an online community.
As ASN has grown, it has become even more important to leverage the society’s diverse and global membership. Filling that need requires a digital platform where all members can network, collaborate, discuss, and lead around important issues facing nephrology.
One year since implementation, ASN Communities continue to evolve to provide members opportunities to network and collaborate. Rather than being rigid, ASN Communities seek to be responsive and bottom up, providing a venue for the society’s members to set
The COVID-19 pandemic has brought new urgency to the need for alternatives to in center dialysis for people with kidney failure. Historically, integrating patient preferences into device development has been limited. Developments in the kidney community in recent years, including the KidneyX and the Advancing American Kidney Health initiative, have accelerated development of transformative devices for kidney replacement therapy.
Session on Collaborating for Innovation to Support KidneyX
Eric Hargan, Deputy Secretary at the US Department of Health and Human Services (HHS) began the second day by sharing HHS’s priorities for kidney care. First, to increase efforts at preventing, detecting, and slowing the progression of kidney diseases. Second, to provide more treatment options to people with kidney failure. Third, to increase the number of transplantable organs and develop wearable and artificial kidneys.