Search

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.

Rationale & Objective Digital health system tools to support shared decision making and preparation for kidney replacement treatments for patients with chronic kidney disease (CKD) are needed. Study Design Descriptive study of the implementation of digital infrastructure to support a patient-centered health system intervention. Setting & Participants 4 CKD clinics within a large integrated health system. Exposure We developed an integrated suite of digital engagement tools to support patients’ shared decision making and preparation for kidney failure treatments. Tools included an automated CKD patient registry and risk prediction algorithm within the electronic health record (EHR) to identify and prioritize patients in need of nurse case management to facilitate shared decision making and preparation for kidney replacement treatments, an electronic patient-facing values clarification tool, a tracking application to document patients’ preparation for treatments, and an EHR work flow to broadcast patients’ treatment preferences to all health care providers. Outcomes Uptake and acceptability. Analytic Approach Mixed methods. Results From July 1, 2017, through June 30, 2018, the CKD registry identified 1,032 patients in 4 nephrology clinics, of whom 243 (24%) were identified as high risk for progressing to kidney failure within 2 years. Kidney Transitions Specialists enrolled 117 (48%) high-risk patients by the end of year 1. The values tool was completed by 30/33 (91%) patients who attended kidney modality education. Nurse case managers used the tracking application for 100% of patients to document 287 planning steps for kidney replacement therapy. Most (87%) high-risk patients had their preferred kidney replacement modality documented and displayed in the EHR. Nurse case managers reported that the tools facilitated their identification of patients needing support and their navigation activities. Limitations Single institution, short duration. Conclusions Digital health system tools facilitated rapid identification of patients needing shared and informed decision making and their preparation for kidney replacement treatments. Funding This work was supported through a Patient-Centered Outcomes Research Institute (PCORI) Project Program Award (IHS-1409-20967). Trial registration ClinicalTrials.gov NCT02722382., Graphical abstract

Osteoarthritis of the knee is a chronic disease associated with pain and reduced quality of life. The ability to reliably measure patient-reported symptoms is important for clinical decision making and evaluation of outcomes. Electronic and web-based tools can eliminate much of the labor-intensive aspects of questionnaire administration and enables both real-time evaluation of responses by physicians and integration of data from multiple sites. This article describes the results of implementing a single integrated electronic questionnaire system into routine orthopedic practice at 2 diverse institutions.Case study.A web-based version of a general quality-of-life questionnaire (EuroQol 5-dimension [EQ-5D]) and the pain domain of a disease-specific questionnaire (Knee Osteoarthritis Outcome Score [KOOS]) were administered in the office waiting room to (n = 666) patients at 2 centers over a 9-month period using touchscreen devices. Data were analyzed and descriptive statistics were calculated to assess feasibility of integration into the distinct work flows and to assess the agreement of the results.The electronic questionnaire had a completion rate of 93% to 95%. Average questionnaire completion times were 3 to 5 minutes at each institution. Mean EQ-5D and KOOS scores for patients pre- and postsurgery were also consistent with prior literature studies.Lessons learned for future adoption of questionnaire systems elsewhere include the need for baseline assessment of clinic work flows to identify the optimal point of administration and the need for IT support. This study demonstrates the feasibility of routinely collecting patient-reported data as part of standard care, which will become increasingly important as the nationwide emphasis on tracking quality and cost-effectiveness of treatments in orthopedics grows.