Patients and Stakeholders
Patient perspectives on the value, relevance, and patient-centered priorities for anemia management have been historically absent in the design of anemia research. Specifically, the role of dialysis patients in anemia treatment research is usually restricted to being objects of study and beneficiaries of research results, while decision-making on what research should be conducted is traditionally the domain of a small group of experts, mainly researchers and clinicians. Patients have an important voice however, and they can convey what it means to be anemic (while also being on dialysis) and how treatment of anemia impacts their lives. This Symposium is a chance for patients to amplify their voice and be heard by Anemia Research Community Stakeholders – clinicians, dialysis facility administrators, principal investigators, nurses, dietitians, social workers, and other members of the community.
We’ve invited thirteen patients, patient advocates, caregivers, and researchers to serve as key note speakers, breakout session leaders and panelists. Many of these speakers also serve on the project’s Patient-Centered Research Partnership (PCRP):
Derek Forfang; Jay B. Wish, MD; James Kaufman, MD; Andrew Conkling; Brian Hess; David M. White; Kathi Niccum, EdD ; James L. Mason; Andrew S. Narva, MD, Mellar Davis, MD; Amit Sharma, MD.
In addition to PCRP members who will be invited to the conference, we will ask our collaborating organizations who represent the entire spectrum of ESRD patients, patient groups, physicians and the dialysis industry For eg. American Association of Kidney Patients(AAKP), Dialysis Patient Citizens(DPC), National Kidney Foundation(NKF), Renal Physicians Association(RPA), United States Department of Veterans Affairs(VA), National Institute of Diabetes and Digestive and Kidney Diseases(NIDDK) to disseminate information about this conference to their memberships who make-up the following categories: patients and family members; nephrologists (Kidney Doctors); nurses and other allied health workers such as dieticians, technicians and social workers who collaborate in caring for kidney patients.
The conference will provide an opportunity for an open and constructive dialogue between various stakeholders, with participants committing themselves to identifying priority areas with corresponding research topics. To increase patient attendance at the conference, we plan to invite local dialysis patients.