Background: Anemia is nearly universal among dialysis patients. The one-size-fits-all anemia management strategies provided by their physicians often do not allow dialysis patients to achieve their patient-centered goals. Patient perspectives on the value, relevance, and patient-centered priorities for anemia management have been absent. There is a need to develop a high-priority research agenda on which to base future patient-centered anemia management research.
Proposed Solution to the Problem: The project team will address the lack of a patient voice in anemia management by establishing a patient-centered research partnership (PCRP) in which dialysis patients and patient stakeholders are placed at the center of prioritization and generation of anemia management topics to culminate in a one-day conference to create an integrated list of anemia management patient-centered research priorities. Research priorities will be disseminated to public and private research funding agencies, payers, and regulators. It will also be shared withothers involved in coverage, reimbursement, and clinical guidelines to improve anemia management in dialysis care.
Objectives: By incorporating the dialysis patient and stakeholder voice and perspective, the proposed project aims to develop consensus-driven comparative effectiveness research (CER) priorities (one integrated list) emphasizing future opportunities for research in ESRD anemia management to achieve dialysis patient-centered goals.
Activities: To facilitate the involvement of patients and stakeholders in this proposed research agenda-setting conference project, the dialogue model (DM) for patient participation will be used. In the DM, research is not framed by the relevant interests of experts but developed in interaction with various stakeholders including, in our case, dialysis patients and stakeholders. The DM model comprises six phases or activities: exploration, consultation, prioritization, integration, programming, and implementation. To identify patient and stakeholder anemia management research priorities, the project team proposes to use a three-panel Delphi approach to select priority research question themes and specific topics. The final list of research questions will be translated into CER questions during a conference to be held during the summer of year 2.
Projected Outcomes and Outputs: Establishment and active engagement of PCRP in which patients and patient stakeholders are placed at the center of all aspects of priority setting; an integrated list of research priorities; a PCOR anemia management research agenda. Implementing the research agenda identified in this project will result in individualized patient care and improved dialysis outcomes.
Patient and Stakeholder Engagement Plan: The project team has identified and included the following groups in the project: ESRD patients, dialysis advocacy groups, geographically diverse health systems, and dialysis industry members. The project team will use the dialogue model (DM), which has been shown to be a methodologic and systematic way of engaging patients and stakeholders in priority setting. The DM ensures patient and stakeholder engagement in the design, implementation, and dissemination of conference results on developing PCOR anemia management research priorities.
Project Collaborators: patients, dialysis advocacy groups, diverse health systems, industry, policy makers.