U.S. Organ Transplantation System - Its History, Present, and Future.

The U.S. Organ Transplantation System is administered by the Health Resources and Services Administration, a division of the U.S. Department of Health and Human Services, and is contracted with the United Network for Organ Sharing (UNOS) to maintain the Organ Procurement and Transplant Network (OPTN). It is a very complex system whose goals are to ensure effectiveness, efficiency, and equity of organ sharing in the national system of organ allocation, as well as to increase the supply of donated organs available for transplantation. UNOS has been the only agency contracted by the OPTN since 1987. The OPTN has proposed changes to modernize and revamp the organ transplant system to improve access, equity, and transparency. There is a federal initiative to modernize the U.S. organ procurement system. The initiative includes the introduction of competitive bidding to administer the contract of the OPTN to provide de-monopolization of the infrastructure and bring more alternatives to improve the organization of the existing system.

Dissolving Disincentives to Living Kidney Donation.

Despite barriers and disincentives to living kidney donation, a record-setting number of living donor transplants (6,867) were performed in 2019. Additionally, there was a 24% increase in living donor kidney transplants from 2014-2019. These increases are welcome, yet the supply has not kept up with the demand, and the kidney transplant waiting list continues to grow. Innovative solutions are necessary to overcome disincentives to living kidney donation and increase the number of donors. The authors propose changing laws and rules to reimburse donors for all expenses related to donating a kidney; informing them of all the options of donation, including directed, non-directed, paired exchange, remote, and advanced donation; informing them of programs that transplant centers provide, including whether or not the center participates in the National Kidney Registry Donor Shield program; educating each donor about their personal risk; and dispelling misinformation they may have about living kidney donation. Implementing these measures will require a national, standard approach because there is variability between the states in relation to work leave and financial incentives for living donation.

Patient perspectives on engagement in shared decision-making for asthma care.

Introduction: Engagement of patient and advocacy group stakeholders is increasingly considered essential to meaningful outcomes research. Patient-centred research benefits from partnership formation between patients, clinicians and research team members. Here, we describe the rationale for engaging patients on a research team and a case study of patient engagement on an asthma shared decision-making study. Methods: Here, we describe a case study of patient engagement in outcomes research and examine the variety of roles patients are engaged in and the associated impact on the study. Results: Patients assisted the project at various levels and were integrated into the research team by (i) advising on study development; (ii) assisting with design and usability of study materials, including the toolkit, patient surveys and dissemination strategies; and (iii) advocacy via membership in external disease-specific organizations and participating in outcomes research conferences. Patients were engaged both individually and as members of a patient advisory board. Primary lessons learned were the importance of building a trusting partnership with patients through understanding perspectives, being aware of clearly explaining patients' roles, research methods and jargon, providing training, listening to patients' needs and understanding what the partnership means from a patient perspective. Conclusions: For the case study described, patient engagement directly influenced multiple aspects of the study, including study design, implementation, data analysis and dissemination through incorporation of the patients' and caregivers' input and concerns.

The North American Primary Care Research Group's Patient and Clinician Engagement Program (PaCE): Demystifying patient engagement through a dyad model.

Background: Community engagement in research is essential for translating the best evidence into community and clinical practice to improve the health and well-being of the population. Objective: North American Primary Care Research Group's Patient and Clinician Engagement Program (PaCE) program aims to develop a robust community of patients and primary care providers with knowledge and understanding of the unique features of patient-centred outcomes research related to primary care in order to advocate for and engage in research. Methods: PaCE employs a 'dyad' model in which a patient and a primary care provider collaborate to learn about and engage in primary care, primary care research, grant review, proposal development and advocacy. A series of educational trainings held in conjunction with national primary care conferences, international webinars and local symposia make up the foundation of the PaCE curriculum. Results and Conclusions: To date, 186 participants have completed the full-day, interactive PaCE training, and more than 250 people have participated in PaCE webinars and/or symposia. A 6-month follow-up sent to PaCE participants evaluates engagement activities following training.

Understanding the Changes to the National Deceased Donor Allocation System.

The national deceased donor kidney allocation system has not been changed since 1986. After many years of study and collaboration, a new policy to revise the system goes into effect on December 4, 2014. This new system is intended to increase access to kidney transplantation and improve the overall success rates. Although the majority of candidates will not be significantly affected by the changes, certain populations of patients are projected to have decreased waiting times. Transplant candidates expected to need a kidney the longest are also more likely to receive a kidney predicted to last the longest. Many educational resources have been provided to transplant centers and have also been made available to patients and referring physicians.

Evaluation of a shared decision-making intervention for pediatric patients with asthma in the emergency department.

BACKGROUND: Asthma is a difficult-to-manage chronic disease marked with associated outcome disparities including an increase rate of emergency department (ED) visits for uncontrolled asthma among patients who are most at-risk. Shared decision making (SDM) is a process by which the patient and provider jointly make a healthcare choice. SDM improves patient outcomes; however, implementation barriers of time constraints and staff availability are limitations. The use of health IT solutions may increase the adoption of SDM, but best practices for implementation are not well understood. The Consolidated Framework for Implementation Research (CFIR) is a flexible comprehensive model used to identify barriers and facilitators influencing implementation. The goal of this study is to implement an innovative web-based pediatric SDM tool in the real-world setting of two large healthcare system EDs through the following aims: (1) convene a patient, research, and ED stakeholder advisory board to oversee review of protocol and study materials prior to implementation, (2) implement the SDM intervention where providers and staff will be trained to incorporate use of this SDM intervention, (3) conduct on-going evaluation of barriers, facilitators, and implementation outcomes to tailor implementation in the EDs, (4) evaluate patient-centered outcomes of primary care utilization and changes in ED visits and hospitalizations before and after the SDM intervention, and (5) understand and document best practices for ED implementation. METHODS: The CFIR model will guide the implementation evaluation. Researchers will administer surveys to the clinical team and patients at baseline, 3, 6, and 12 months to inform implementation design, determine barriers and facilitators, and resource-needs to allow for real-time process adjustments within the EDs. Focus group or key-informant interviews and analysis will provide additional feedback to the stakeholder team to iterate the implementation process. Researchers will track patient-centered outcomes including increased primary care, ED, and inpatient utilization over the duration of the study. DISCUSSION: To advance asthma care and the field of implementation science, further research is needed to assess best practices for incorporating SDM into high-need healthcare settings such as the ED. This knowledge will facilitate improved outcomes and appropriate policy changes towards further use of SDM interventions in local and national acute care settings.

Comparing traditional and participatory dissemination of a shared decision making intervention (ADAPT-NC): a cluster randomized trial.

BACKGROUND: Asthma is a common disease that affects people of all ages and has significant morbidity and mortality. Poor outcomes and health disparities related to asthma result in part from the difficulty of disseminating new evidence and care delivery methods such as shared decision making (SDM) into clinical practice. METHODS/DESIGN: This non-blinded study will randomize 30 primary care clinics in NC stratified by four PBRNs. We will test dissemination across these practices using a facilitator-led participatory approach to dissemination (FLOW), a novel method of participatory dissemination involving key principles of community-based participatory research, and a more typical "lunch and learn" dissemination method. Specifically, we will use cluster randomization to assign each of the 30 practices to one of three arms: (1) control, no dissemination; (2) traditional dissemination, one didactic session a year and distribution of educational material; and (3) FLOW dissemination. We hypothesize that at the unit of randomization, the clinic, patients in the FLOW dissemination arm will be more likely to share in their treatment decisions compared to patients in the traditional dissemination or control arms. All outcomes will be measured at the level of the clinic. Adoption of the SDM approach will be evaluated by 1) asthma exacerbations, 2) level of patient involvement in the decision making process, and 3) qualitative assessments from patients and providers. TRIAL REGISTRATION: The trial was registered on January 27, 2014 through the United States National Institutes of Health's ClinicalTrials.gov NCT02047929 and funded by the Patient-Centered Outcomes Research Institute (PCORI).