Key Points Question What are the current policies for clinical trial registration, summary results sharing, and individual patient data sharing among the top 10 noncommercial US health research funders? Findings In this review study, 6 of 9 (67%) of the top US funders have a publicly available written policy addressing all 3 major trial transparency domains. However, fewer US funders require specific transparency actions in these domains (11%-56%) or monitor compliance with their policies (56%-67%). Meaning More work remains to be done to ensure timely implementation and enforcement of clinical trial transparency initiatives to reduce waste and realize public value from clinical research investments.

Background People with advanced, serious illnesses experience a high burden of physical and psychosocial symptoms, limitations in functioning, and declining quality of life (QOL) over the course of their illness. Caring for these patients can take a significant physical and emotional toll on their caregivers as well. Palliative care has been defined as ''patient-and family-centered care that optimizes QOL by anticipating, preventing, and treating suffering. Palliative care throughout the continuum of illness involves addressing physical, intellectual, emotional, social, and spiritual needs and facilitating patient autonomy, access to information, and choice.'' 1,2 Evidence reviews show that receipt of palliative care can provide clinically meaningful relief of a broad range of patient symptoms, reduce caregiver burden, and improve patient and caregiver QOL. 3e5 At the same time, patients and caregivers report significant barriers to receiving comprehensive palliative care services (i.e., care that facilitates advance care planning [ACP] and medical decision-making, systematically assesses and manages patient symptoms, and addresses caregiver burden). Access to comprehensive palliative care is typically limited to either inpatient hospitals or endof-life hospice settings. Thus, patients who are not terminally ill and their caregivers report an unmet need for receiving palliative care where they live (i.e., in their communities). 6 The challenge of accessing effective palliative care services is only expected to exacerbate, due to increasing demand from the aging U.S. population with multiple comorbid health conditions and limited supply from a projected shortage of competent clinicians to provide these services. 5 There is an urgent need for research studies to generate evidence for identifying the optimal mix of providers, settings, and content of palliative care needed at different stages of an advanced illness, from diagnosis until death. In the following section, we discuss the Patient-Centered Outcome Research Institute's (PCORI's) current and future investments in research on palliative care.

Palliative care is a growing specialty that addresses the needs of individuals diagnosed with advanced illness and their caregivers. Although palliative care has been shown to improve a variety of patient-and caregivercentered outcomes, access to comprehensive palliative care services for patients is often limited. There is a need to identify the most effective approaches to delivering palliative care to patients in community settings. In fiscal year 2017, based on extensive input from a diverse set of stakeholders, the Patient-Centered Outcomes Research Institute (PCORI) funded nine multisite comparative clinical effectiveness research (CER) trials focused on community-based delivery of palliative care for a total investment of $80 million. These studies, focusing on advance care planning and models of palliative care delivery, represent some of the largest most complex palliative care trials funded to date. Each study evaluates both patient and caregiver outcomes, and together, these trials include a broad range of health conditions, interventions, and settings of care. PCORI has also fostered a learning network of the funded awardees to facilitate the successful conduct of these CER studies and to support awardee efforts to develop collaborative products relevant to advancing the field of palliative care research and practice. The protocols of each of the nine trials, detailed in this issue, demonstrate the expansive reach of the investment PCORI has made in an effort to further the research agenda and provide substantive research evidence in stakeholder-identified areas of need in the field of palliative care.

With the aim of better understanding what the public (as opposed to "patients") wants from health care, this study asked people on the street, "What does the right health care mean to you?" Responses ranged from "Caring about me more than just in the appointment" to "That everyone should see exactly what medical treatment costs." A qualitative analysis revealed that all responses fell into 2 overarching categories: health care at the interpersonal level and health care at the system level. Approximately 66.7% of responses included system-level factors, whereas 59% of responses included interpersonal-level factors. We conclude that the public is cognizant of and concerned about issues that also concern patients and others working to improve health care and, thus, should be engaged in the process to design care in a way that meets their needs and preferences before they become ill or interact with the delivery system.