What steps may clinicians looking after adult congenital heart patients take to improve the care they provide? An adult with complex congenital heart disease (CHD) who required a Fontan circulation has developed a discussion paper with the help of his attending clinicians. Drawing on his personal experience and that of others that he has represented, the paper highlights the problems in communication between such patients and their physician, followed by suggestions as to how to improve patient engagement, empowerment, and enablement. Attention to those suggestions may well benefit all in the care provided for this growing population.

Twelve evidence-based profiles of roles across the Clinical and Translational Science (CTS) workforce and two patient profiles were developed by CTS Personas collaborators in 2019 as part of the CTSA Program National Center for Data to Health (CD2H). Based on feedback received from the community, CTS Personas team members collaborated to produce five additional Personas to broaden representation of the CTS workforce and enhance the existing portfolio. This paper presents the rationale and methodology used in the latest CTS Personas initiative. This work also includes an implementation scenario incorporating multiple Personas. Using the new National Institutes of Health’s (NIH) Data Management and Sharing Policy as an example, we demonstrate how administrators, researchers, support staff, and all CTS collaborators can use the Personas to respond to this new policy while considering the needs of service providers and users, CTS employees with short- and long-term needs, and interdisciplinary perspectives.

Poststroke visual impairment (VI) negatively affects rehabilitation potential and quality of life for stroke survivors. In this cross-sectional observational study, stroke survivors and providers were surveyed to quantify perspectives regarding care for poststroke VI in Alberta, Canada (n = 46 survivors; n = 87 providers). Few patients (35%) felt prepared to cope with VI at the time of discharge from acute stroke and inpatient rehabilitation settings. Less than 25% of stroke survivors, and <16% of providers, felt referral processes were adequate. 95.2% of providers and 82% of stroke survivors advocated for a provincial clinical pathway to improve care quality for poststroke VI.

Twelve evidence-based profiles of roles across the translational workforce and two patients were made available through clinical and translational science (CTS) Personas, a project of the Clinical and Translational Science Awards (CTSA) Program National Center for Data to Health (CD2H). The persona profiles were designed and researched to demonstrate the key responsibilities, motivators, goals, software use, pain points, and professional development needs of those working across the spectrum of translation, from basic science to clinical research to public health. The project’s goal was to provide reliable documents that could be used to inform CTSA software development projects, educational resources, and communication initiatives. This paper presents the initiative to create personas for the translational workforce, including the methodology, engagement strategy, and lessons learned. Challenges faced and successes achieved by the project may serve as a roadmap for others searching for best practices in the creation of Persona profiles.

Objectives: Some countries make considerable effort to involve patients and patient groups in their health technology assessment (HTA) processes; others are only just considering or are yet to consider patient involvement in HTA.

Methods: This commentary offers four arguments why patient involvement should be prioritized by those HTA agencies that do not yet involve patients: (1) from a patients’ rights perspective, (2) based on patient and community values, (3) centering on evidentiary contributions, and (4) from a methodological perspective.

Results: The first argument builds on the Alma-Ata Declaration, which holds that patients have a right and duty to have a say in the planning and delivery of their health care, individually and collectively. Where HTA is used to determine access to technologies and services, we argue that patients have a right to be heard. The second argues that decisions about treatments and services need to be aligned with the core values and morals of the patients whom the health system serves. The third argues that patients have unique knowledge and insights about living with a health condition and their needs for services and treatments regarding that condition, which can add to the knowledge base and value of the HTA process. The fourth argues that involvement of patients can facilitate methodological advancement of HTA, in areas such as early scientific advice and managed entry with evidence development.

Conclusions: An HTA process that includes patient perspectives can, therefore, provide added value to patients, policy makers and healthcare professionals alike.

Osteoradionecrosis (ORN) is a known complication to radiation therapy for head and neck cancer with a prevalence of 5–7% among radiated patients. Treatment might include dental surgery and reconstruction of the jawbone as well as hyperbaric oxygen treatment (HBOT). HBOT takes place in a closed compartment where patients are breathing 100% oxygen under pressure for 90 minutes once a day every weekday for 6 weeks. In Denmark, HBOT is available at two facilities with very different organizational set-ups.