Bethesda, MD 12/26/2017 – The Patient Engagement practice of the Medical Technology and Practice Patterns Institute (MTPPI) has been awarded a two-year contract to produce a national conference on kidney disease research. Patients and stakeholders from around the country will collaborate to create and prioritize a patient-centered research agenda. This conference will amplify the patient’s voice in anemia management by accomplishing the following: 1) establishing and actively engaging a patient-centered research partnership (PCRP) where dialysis patients and patient stakeholders are placed at the center of prioritization and generation of anemia management topics 2) national conference sessions that will create an integrated list of anemia management PCOR research priorities based on rank order and consensus among conference attendees; and 3) dissemination of the PCOR research agenda to payors, regulators, and stakeholders involved in dialysis coverage, reimbursement and clinical practice.
Attendees will include renal patient groups and patient stakeholders. Representatives from the following institutions have committed to participate in the conference sessions: Akebia Therapeutics; American Association of Kidney Patients; Forum of ESRD Networks; Geisinger Health System; GlaxoSmithKline; National Institute of Diabetes and Digestive and Kidney Diseases; National Kidney Foundation; Renal Physicians Association; University Hospital, Indiana University School of Medicine; VA New York Harbor Healthcare System; and Washington Hospital Center. Conference organizers will use multiple collaborative techniques – e.g., dialogue models, Delphi and nominal group techniques – that are inclusive participatory approaches and have a demonstrated track-record of engaging stakeholders.
The output of this conference will include tangible deliverables which identify and incorporate the patient and stakeholder voice and perspective into investigation of the current state of evidence regarding anemia management. Deliverables will also define a range of critical research issues and opportunities based on comparative effectiveness research (CER) that could improve anemia management and patient care and outcomes among dialysis patients. The goal is to develop recommendations for future CER research in ESRD anemia management that achieves dialysis patient goals.
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