Making A Difference Grantees, Fall 2017
We are pleased to announce the Fall 2017 Making A Difference awards
Neal Dickert, MD, PhD (Emory University)
The MOST-consent study: Patient-driven consent for a multi-center adaptive trial in acute ischemic stroke
Clinical trials to improve stroke treatments heighten the consent challenges that arise in any clinical trial. Strokes happen suddenly, and treatment must begin within three hours. Patients must be enrolled in a clinical trial before they are transferred to specialized stroke centers serving as study sites. Thus the consent process must be done remotely, often by surrogates who are communicating with the clinical trialists at the study site by telephone or videoconference.
Elisa J. Gordon, PhD (Northwestern University)
A patient-centered perspective on human subjects protections for deceased donor organ intervention research
Because of the shortage of organs available for transplantation, research is needed to increase the number and quality of organs available for transplantation (e.g., by cooling organs). However, it is possible that some of this experimentation might unintentionally harm the organs. Such research has been controversial because organ recipients are not informed of such research. This project asks whether and how physicians should explain to patients on the transplant waiting list that an organ being offered has been exposed to experimental interventions. National transplantation policy currently is silent on this question. Because organs must be procured and transported quickly, there is limited time for patients to learn about the offered organ and agree to transplantation. This time constraint restricts the recipient’s autonomy to decide whether to accept or decline an organ exposed to experimental interventions. This project will study how patients on the transplantation waiting list want to receive information about interventions on offered organs and whether new approaches are needed for consent before such organs are transplanted. The findings will inform national policies that try to improve organ preservation and access to transplantation, while also protecting patients’ ability to understand benefits and risks of a transplant and maintaining public trust in a fair and efficient organ allocation system.
Alicia Fernandez, MD (University of California, San Francisco)
When patients demean healthcare providers
When patients demean physicians, nurses, and medical students on the basis of providers’ race, ethnicity, and sexual orientation, it may undermine the therapeutic relationship between the patient and healthcare provider, compromise the quality of care, offend healthcare workers, violate their employment rights, cause them moral distress and burnout, and harm the educational environment. This project will analyze the range of such demeaning remarks and behaviors in a highly diverse academic public hospital. The project will also recommend institutional policies and protocols that balance respect for patient autonomy, the patient’s medical needs, and the rights and dignity of healthcare workers. The investigators will recommend how to change institutional culture to implement such policies and protocols. These policies and protocols could be adopted by other healthcare institutions throughout the country.
Alexander Langerman, MD (Vanderbilt University)
Ethical analysis of overlapping surgery
Overlapping surgery, a common practice, helps surgeons provide care to more patients. However, there can be controversy about what surgeons believe are the critical parts of a procedure that require their presence in the operating room. Patient perspectives on overlapping surgery are not known, including what patients want to be told about it during the informed consent process. This project will interview and survey patients and surgeons to answer these questions. The project will also analyze how potential restrictions on overlapping surgery could impact patient care. Results will be used to develop a roadmap for surgeons, patients, and policymakers to help guide informed consent, education, and policies for the ethical practice of overlapping surgery.