Linnea Olson: An Appreciation of a Giant (Preprint)

UNSTRUCTURED Reviewing the life and impact of the late Linnea Olson, a cancer patient advocate who helped shape cancer clinical trials

Patient Advocacy and Health Literacy

This chapter presents a reflective analysis based on the literature and on the author's experience regarding the challenges for health professionals and for patients within the scope of the patient advocacy activity, especially in Portugal, where the formal figure of the patient advocate is almost non-existent. Patient Associations, professionals, patients and their families, and citizens in general are unaware of this concept, making it a priority to invest in health literacy and to structure training programs in patient advocacy. The authors believe that there is still a long way to go in Portugal in this matter and that the model, Assertiveness, Clarity of Language, and Positivity (ACP), is an essential model for the entire patient advocacy development process and implementation of the patient advocate figure in the area healthcare. In this chapter, some experiences, projects and the first results of an exploratory study will be presented in order to help in improving the understanding and knowledge of these concepts in Portugal.

“I Don’t Know, I’m Just the Interpreter”: A first approach to the role of healthcare interpreters beyond bilingual medical encounters

Researchers have long been preoccupied with the issue of role in healthcare interpreting. However, most studies approach this construct in the course of medical consultations, leaving somewhat unattended other spaces and activities in which interpreters also participate. This paper aims to contribute to a better understanding of the healthcare interpreters’ role in these areas. Drawing on participant observation, I examined the roles played by five interpreters at a hospital in Madrid for five months in activities different to provider-patient interactions (e.g. waiting with patients). Seven key roles were identified outside medical consultations: intercultural and moral mediator, patient advocate, institutional navigator, healthcare ambassador, information miner and companion/conversation partner. A key finding is that most events in which interpreters participate occur outside medical consultations, which makes it essential to shift the attention to the roles played in these alternative spaces. Understanding the role of healthcare interpreters in different activities within the realm of healthcare scenarios is essential to construct an accurate vision of what being just an interpreter really means.

Bedside rationing in cancer care: Patient advocate perspective

Rationing in healthcare remains very much a taboo topic. Before COVID-19, it rarely received public attention, even when it occurred in everyday practices, mainly in the form of implicit rationing, as it continues to do today. There are different definitions, types and levels of healthcare rationing, according to different perspectives. With the aim of contributing to a more coherent debate on such a highly emotional healthcare issue as rationing, here are provided a number of reflections from a patient advocate perspective which are specifically focused on bedside rationing, the most troublesome level, both for patients and clinicians, particularly in regard to cancer care. Oncology, with its numerous expensive therapies and increasing number of patients, is undeniably one of the main areas contributing to the increase in healthcare costs. However, the fixed budgets of today's publicly financed health systems cannot allow unlimited access to the potentially beneficial treatments to all patients. Bedside rationing constitutes the last phase of many decision-making processes occurring at different interrelated levels (macro-levels), both inside and outside healthcare systems, which implicitly and inevitably result in a bottleneck determined by the upstream decisions themselves. Shifting from implicit to explicit bedside rationing essentially means moving from a paternalistic to a citizen-before-patient approach; this implies, first of all, a cultural change. Practical bedside rationing is an ethically complex topic, but one that needs to be urgently addressed in a transparent and open debate. In this scenario, the oncological community – patients, patient advocates and clinicians – can and should play an important role.

The tale of TILs in breast cancer: A report from The International Immuno-Oncology Biomarker Working Group

The advent of immune-checkpoint inhibitors (ICI) in modern oncology has significantly improved survival in several cancer settings. A subgroup of women with breast cancer (BC) has immunogenic infiltration of lymphocytes with expression of programmed death-ligand 1 (PD-L1). These patients may potentially benefit from ICI targeting the programmed death 1 (PD-1)/PD-L1 signaling axis. The use of tumor-infiltrating lymphocytes (TILs) as predictive and prognostic biomarkers has been under intense examination. Emerging data suggest that TILs are associated with response to both cytotoxic treatments and immunotherapy, particularly for patients with triple-negative BC. In this review from The International Immuno-Oncology Biomarker Working Group, we discuss (a) the biological understanding of TILs, (b) their analytical and clinical validity and efforts toward the clinical utility in BC, and (c) the current status of PD-L1 and TIL testing across different continents, including experiences from low-to-middle-income countries, incorporating also the view of a patient advocate. This information will help set the stage for future approaches to optimize the understanding and clinical utilization of TIL analysis in patients with BC.

Enhancing Digital Empathy and Reimagining the Telehealth Experience

As telehealth is increasingly adopted across all care settings, it is important to understand how clinicians can adapt and respond to patient needs. Drawing from experiences of a virtual primary care physician and a patient advocate, this Perspectives editorial provides additional insights beyonds the telehealth basics for establishing digital empathy and a remote therapeutic connection.

Treating Physician vs Independent Medical Evaluator

Who is in the better position to evaluate, the treating physician or an independent medical examination (IME) physician? A treating physician has a patient-advocate role because he or she has a doctor-patient relationship with the patient/claimant. Unlike the treating physician, an IME physician does not have a doctor-patient relationship, and can, therefore, provide an impartial evaluation necessary to assess the extent to which the patient/claimant is impaired or disabled from functional activities of daily living.

From Provider to Advocate: The Complexities of Traumatic Brain Injury Prompt the Evolution of Provider Engagement

Treating a patient with traumatic brain injury requires an interdisciplinary approach because of the pervasive, profound and protean manifestations of this condition. In this review, key aspects of the medical history and review of systems will be described in order to highlight how the role of any provider must evolve to become a better patient advocate. Although this review is written from the vantage point of a vision care provider, it is hoped that patients, caregivers and providers will recognize the need for a team approach.