Engaging patients and family members to design and implement patient-centered kidney disease research

Abstract

Plain English summary We need more research projects that partner and engage with patients and family members as team members. Doing this requires that patients and family members set research priorities and fully participate in research teams. Models for this patient and family member engagement as research partners can help increase patient centered outcomes research. In this article, we describe how we have successfully engaged patients with kidney disease and family members as Co-Investigators on a 5-year research project testing a health system intervention to improve kidney disease care. Abstract Background This article describes a method for successful engagement of patients and family members in all stages of a 5-year comparative effectiveness research trial to improve transitions of care for patients from chronic kidney disease to end-stage kidney disease. Methods This project utilized the Patient-Centered Outcomes Research Institute’s conceptual model for engagement with patients and family members. We conducted a qualitative analysis of grant planning meetings to determine patient and family member Co-Investigators’ priorities for research and to include these engagement efforts in the research design. Patient and family member Co-Investigators partnered in writing this paper. Results Patients and family members were successfully engaged in remote and in-person meetings to contribute actively to research planning and implementation stages. Three patient-centered themes emerged from our data related to engagement that informed our research plan: kidney disease treatment decision-making, care transitions from chronic to end-stage kidney disease, and patient-centered outcomes. Conclusions The model we have employed represents a new paradigm for kidney disease research in the United States, with patients and family members engaged as full research partners. As a result, the study tests an intervention that directly responds to their needs, and it prioritizes the collection of outcomes data most relevant to patient and family member Co-Investigators. Trial registration NCT02722382.

The Impact of COVID-19 on Patient, Family Member, and Stakeholder Research Engagement: Insights from the PREPARE NOW Study

“…Six patient and two family co-investigators and eight representatives from eight kidney disease stakeholder organizations (American Association of Kidney Patients; Council of Nephrology Social Workers; Geisinger Health System; Medical Education Institute, Inc.; National Kidney Foundation; Quality Insights Renal Network 5; Renal Physicians Association; The Care Centered Collaborative at The Pennsylvania Medical Society) have been active research partners from the time of project inception in 2013. 12 …”

“…As previously described, 12 patient and family co-investigators have been very involved with the study from the project’s conception to dissemination. Over the 4 years of the project before the COVID-19 pandemic, co-investigators participated in regular meetings with research team leaders and staff (usually monthly), where they reviewed updates on the project and provided input into all aspects of the research.…”

Grounding co‐writing: An analysis of the theoretical basis of a new approach in mental health care

“…VBP, primarily a derivative of philosophical value theory, adds to the standard resources for diagnosis in psychiatry based on symptom recognition by offering a set of practical tools for working effectively in areas where clinical decision-making depends not only on complex evidence (addressed by evidencebased practice) but also on complex values (Fulford et al, 2005). The intent is to work with patients and their family members as coinvestigators for an extended period, allowing everyone to get to know each other and develop an informed awareness of the care process (Browne et al, 2020).…”

Co-destruction in social care services: how to identify and evaluate barriers arising from a co- production exercise with family carers living in rural and remote areas

“…Team (Citizens and Researchers/Providers) Citizens Lack of competences [15,20,22,24,31,32] Conflicts [22,28] Damage to ethics obligations [26] Lack of trust [28,[33][34][35] Different culture [28,33,36] Lack of training on citizens [26,[37][38][39][40] Different opinions and strong personalities [41] Damage relationship [23] Lack of citizens' motivation [31,37] Lack of feedbacks exchange [41] Additional burden on citizens[1] Lack of healthy and cognitive condition [1] Lack of attention to individual needs [40] Fatigue to participate [1] Being frail/with severe illness [1] Tokenism [22] Citizens felt railroaded and disempowered [29,30] Lack (or perceived)of power [1,[22][23][24]33,41,42] Usage of technical language [22] Increasing inequalities [31] Lack of citizens' compensation [40,43] Low citizens' satisfaction toward results …”

“…System System Lack of resources [1,26] Misuse of resources [15] Overuse/underuse of resources [15] Lack of time [33,35,42] Lack of transparency [24,40,42] Damage interpersonal relationship [26] Lack of funding [41] Unreliable and unsatisfied results [31] Complexity of the network [20] Additional costs & effort [31] Initiatives' project related [1,28] Lack of inclusion of marginalized citizens [23,45] Does not clarify expectations [1,40,41] Does not clarify roles [1,22] Does not clarify purpose of involvement [22] Mobility issues [20,23,33,35,40,45] Although the list of barriers of co-production in the health and social care literature seems quite well explored, few attempts in the literature have explained how to individuate and interpret these barriers [1]. Barriers to co-production are usually reported in broad terms [46] without highlighting the process by which negative effects are achieved.…”