Living Organ Donation Role of Ethics for Improved Clinical Practice

Solid organ transplantation represents one of the most important achievements in history of medicine. Over the last decades, the increasing number of transplants has not been of the same extent of the number of patients in the waiting lists. Live donation has been implemented in order to reduce the gap between supply and demand. From an ethical standpoint, the donation process from a live donor seems to violate the traditional first rule of medicine—primum non nocere because inevitably exposes healthy persons to a risk in order to benefit another person. In the chapter will be presented the crucial role of ethics and specific ethical issues in the different forms of live donation, such as financial incentives for living donation, reimbursement in unrelated live donation, minor sibling-to-sibling organ donation. The ethical aspects of live donor organ transplantation are continuously evolving; in order to make this strategy more beneficial and lifesaving, everyone involved in the process should make every possible effort with in mind the best interests of the patients.

Health Literacy and Patient -Reported Outcomes

Modern healthcare needs to identify parameters for high-quality care. Quality improvement is the key for advancing in healthcare, and the new assessment tool shifts from a disease-centered outcome to a patient-centered outcome. Clinical outcome such as morbidity and mortality are directly connected and interdependent from patient-reported outcomes: well-informed patients who decide with their healthcare provider what treatment is best for them have better outcomes and higher patient satisfaction rates. These subjective data collected by rigorous, meaningful, and scientific methods and presented in a utilizable format can be used to create care objectives towards which both the surgeon and their patient can travel. Time has come to carry patient-centered outcomes from research into decision making and daily care plans. This chapter outlines a focus beyond life-prolonging therapy, aiming to minimize the negative effects of treatment, optimize quality of life, and align medical decisions with patient expectations.

Increasing Health Literacy to Improve Clinical Trial Recruitment

Health literacy has been found to be linked to healthcare understanding and decision making. Therefore, it makes sense why individuals who do not understand clinical trials will be less likely to want to enroll in one. In fact, three major barriers found in the literature that prevent potential participants from enrolling in clinical trials include a distrust or negative perception, lack of understanding, and lack of accessible and affordable healthcare. Hence, there is a need to increase potential participants' healthcare understanding so that they can make the best healthcare decisions for themselves. Strategies suggested to help increase potential participants' health literacy include revising informed consent forms, utilizing culturally targeted statements, using a variety of material, and training investigative site personnel. These proposed strategies may help increase health literacy, which in turn could improve clinical trial recruitment. Furthermore, these strategies focus on different elements of health literacy and coupled together may bring the most improvement.

Health Literacy

Organ shortage is a worldwide persisting problem, as patients on waiting lists increase while actual donors cannot meet the demand for organs. Cultural and religious concerns, gaps of information, lack of medical procedure awareness and of understanding transplant-related terminology are some reasons why people refuse to donate organs. The medical, ethical, social, cultural, religious aspects of deceased organ donation (DOD) bring out the need for a systematic agenda of lifelong learning public awareness raising and health literacy on this issue. This chapter presents findings of a comparative research project in three European countries about how people learn about DOD and their suggestions for systematically promoting health literacy. A total sample of 1309 medical students, renal patients, and hospital administrative staff participated in a survey regarding attitudes, knowledge, sources of information, and communication about DOD. In addition, 51 participants took part in focus groups elaborating on their experiences and suggestions regarding health literacy about DOD.

Health Literacy and Ethnic Minority Populations

This chapter will show how optimizing health literacy can benefit the delivery of healthcare to the population in a way that materially addresses the inequalities in the National Health Service (NHS). These inequalities adversely impact different population groups in different ways, for various reasons. However, ethnic minority populations are especially vulnerable to inequalities having an adverse effect on the delivery of healthcare to the population, thereby adversely affecting their access, engagement, and healthcare benefits and consequently their general health, wellbeing, and life expectancy. Optimizing health literacy in these populations will enable increased engagement and participation, thereby delivering healthcare more effectively to the population by tailoring it to their needs and addressing current inequalities.

Health Literacy in School

Health literacy is a core element of patient-centered healthcare. Poor health literacy is a silent epidemic across the globe as it affects every aspect of health. Schools bear an important role in increasing health literacy. Improving health literacy in adolescence is supposed to improve the later life as adolescents are used to carry their modified behavior lifelong. Various school-based interventions covering physical and mental health have been studied and found to be effective. International bodies recommend incorporation of health-related tasks into school lessons and considered that teaching the young people will be a good investment for future. Multisectoral collaborations and locally proved effective strategies are the practical challenges. This chapter aims to focus on health literacy, global scenario of health literacy, measurement tools, role of school, interventions, limitations, and challenges of health literacy.

Health Literacy in Non-Communicable Diseases

The chapter highlights some of the methods used to embed health literacy principles into patient outreach and education materials about non-communicable diseases: chronic conditions including mental health conditions. A person's or population's understanding and engagement with health represents its health literacy. Health literacy is a form social capital. The authors use an ecological, socially contextualized model of health literacy and demonstrate how it guides the structure and content of health education material in case examples from New York City, United States, and Greece in Europe. While the specific methods used in these cases vary, the essential principal is that it is critical to identify and build on information about an individual's health literacy contextualized in the individual's or group's socio-cultural and lived experiences. Only this way can an individual's or group's health literacy be advanced so that they can engage in behavior changes for both short- and long-term health outcomes.

Uberization of Healthcare

Over the years, health literacy has embodied various forms to aid healthcare decisions. For technology and health literacy to merge, the author examines and discusses how the following three elements can be applied to implement a type of technology and to what audience: 1) time, 2) cost, and 3) engagement. Through focused time, cost, and engagement efforts, healthcare can be optimized without reductions to the quality of information. Due to its rapid spread, information could to be fixed accordingly. This would positively impact the decision-making process for communities and public and private sectors. Benefits outweigh risks related to the implementation of technology and health literacy. Traditional medicine is known to have difficulties adapting to change. However, the risk is too high not to explore the use of technology and health literacy.

Back to the Basics

Health literacy is a critical foundation that needs to be considered prior to the development and deployment of consumer e-health technologies. The authors indicate the problems associated with the lack of effective health literacy strategies in current consumer e-health interventions and then present a patient-centered, disease-specific, task-relevant, and contextualized health literacy approach. The goal of such an approach is to help patients better understand their illnesses make sense of their health data, make informed decisions, and more effectively manage their health conditions. The authors make five recommendations concerning health literacy in order to make e-health interventions effective. They also describe next-generation health literacy interventions that take advantage of emerging technologies such as speech recognition, natural language processing, artificial intelligence, automatic translation, and augmented reality. Finally, the authors point out a research and development direction towards an intelligent, integrated, and connected consumer e-health solution.

Health Literacy in the Development of Kidney Transplantation Programs in Low- and Middle-Income Countries

The need to introduce complex medical technologies in low- and middle-income countries (LMIC) is increasing, to improve quality of life and life expectancy. Despite improvements in medical infrastructure, many countries do not have the skills required to implement such technologies and need support from overseas organizations. Transplant Links (TLC) is a UK charity supporting the development of sustainable kidney transplant programs in LMIC countries. TLC's experience demonstrates health literacy challenges encountered in introducing a complex medical technology, of which transplantation is a good example. Such challenges were found to be wide-ranging, in a specialty already associated with low levels of health literacy. Nevertheless, such challenges need to be addressed and measures undertaken to improve the level of understanding of renal failure and transplantation by patients, families, healthcare workers, and other stakeholders including politicians, healthcare managers, and the media. These measures may be transferable to the development of other complex medical technologies.