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

BACKGROUND: Little is known about the impact of COVID-19 on patient, family member, and stakeholder patient-centered outcomes research engagement. OBJECTIVE: To answer the research questions: (1) What is the impact of COVID-19 on the lives of patients with kidney disease and their families? (2) What is the impact of COVID-19 on research engagement for patient and family member research team members who are themselves at very high risk for poor COVID-19 outcomes? and (3) How can we help patients, family members, and stakeholder team members engage in research during COVID-19? DESIGN: We conducted virtual semi-structured interviews with patient and family member co-investigators and kidney disease stakeholders from the PREPARE NOW study during November 2020. The interview guide included questions about participants' experiences with the impact of COVID-19 on research engagement. PARTICIPANTS: Seven patient and family member co-investigators and eight kidney disease stakeholders involved in a kidney disease patient-centered outcomes research project participated in the interviews, data analysis, and writing this manuscript. APPROACH: We used a content analysis approach and identified the main themes using an inductive process. KEY RESULTS: Respondents reported three main ways that COVID-19 has impacted their lives: emotional impact, changing behaviors, and changes in health care delivery. The majority of respondents reported no negative impact of COVID-19 on their ability to engage in this research project. Suggestions for patient-centered outcomes research during COVID-19 and other emergencies include virtual research activities; active engagement; and promoting trust, honesty, transparency, and authenticity. CONCLUSIONS: COVID-19 has had a significant negative impact on patient, family member, and stakeholder research team members; however, this has not resulted in less research engagement. TRIAL REGISTRATION: Clinicaltrials.gov NCT02722382.

Nephrology registry gives specialty control of quality data.

It is important for providers and practices to begin working with registry level data. Submitting data to a qualified clinical data registry currently satisfies Meaningful Use Stage II menu set items. In the future, with the rollout of MIPS and the increasing focus on sharing risk, registry data will be used as a benchmark for both publicly-reported performance (the physician compare program will be linked to provider-level QCDR data) and modifications to reimbursement. It is important to remember that PQRS data is the basis for the value based modifier now and MIPS- related quality data after 2018. The RPA has launched and is evolving a unique and versatile nephrology-specific data collection and analytics tool. In collaboration with the American Society of Diagnostic and Interventional Nephrology, vascular access measures will be added to the registry for 2016. The registry and the analytics platform is a tier of software operating above your practice management system and EHR and, if data can be obtained, it can span all the locations in which nephrologists provide care.

SGR reform and nephrology: difficult problems, potential solutions.

In light of the massive uncertainty with both the federal government in general and health policy priorities specifically, it is probably constructive to focus on the things we know for sure. In Medicare Part B reimbursement, the SGR system is fundamentally flawed, and must be replaced. All of Congress has recognized this fact, and there is legislation in the House that would move the ball forward on SGR repeal and replacement. Likewise, coordinated care models like ACOs offer a logical process for achieving a triple aim: improving individual health care, improving population health, and promoting cost efficiency in health care. Hopefully, policy makers in Washington will recognize and act on these truths as well.

Nephrologist Leadership in Advocacy and Public Policy.

As a specialty and profession, nephrology has deep roots in the arenas of advocacy and public policy, with nephrologists playing a significant role in garnering legislative attention on the needs of patients with end-stage renal disease. The depth of experiences and unique perspectives of nephrologists and sharing our positions with legislators, regulators, and decision makers are central to achieving the Triple Aim for patients with kidney disease. Advocacy and public policy are conducted externally as well as internally to the House of Medicine and shape the future of kidney care and nephrology practice. This article explores the impact of nephrology leadership on government decision making and the important role of the nephrologist in advocacy and public policy at the Federal, state, and regional levels.

Nephrologists' professional ethics in dialysis practices.

Although the number of incidents is unknown, professional quality-oriented renal organizations have become aware of an increased number of complaints regarding nephrologists who approach patients with the purpose of influencing patients to change nephrologists or dialysis facilities (hereinafter referred to as patient solicitation). This development prompted the Forum of ESRD Networks and the Renal Physicians Association to publish a policy statement on professionalism and ethics in medical practice as these concepts relate to patient solicitation. Also common but not new is the practice of nephrologists trying to recruit their own patients to a new dialysis unit in which they have a financial interest. This paper presents two illustrative cases and provides an ethical framework for analyzing patient solicitation and physician conflict of interest. This work concludes that, in the absence of objective data that medical treatment is better elsewhere, nephrologists who attempt to influence patients to change nephrologists or dialysis facilities fall short of accepted ethical standards pertaining to professional conduct, particularly with regard to the physician-patient relationship, informed consent, continuity of care, and conflict of interest.