Patient and family engaged care (PFEC) is care planned, delivered, managed, and continuously improved in active partnership with patients and their families (or care partners as defined by the patient) to ensure integration of their health and health care goals, preferences, and values. It includes explicit and partnered determination of goals and care options, and it requires ongoing assessment of the care match with patient goals. This vision represents a shift in the traditional role patients and families have historically played in their own health care teams, as well as in ongoing quality improvement and care delivery efforts. PFEC also represents an important shift from focusing solely on care processes to aligning those processes to best address the health outcomes that matter to patients. In a culture of PFEC, patients are not merely subjects of their care; they are active participants whose voices are honored. Family and/or care partners are not kept an arm's length away as spectators, but participate as integral members of their loved one's care team. Individuals' (and their families') expertise about their bodies, lifestyles, and priorities is incorporated into care planning and their care experience is valued and incorporated into improvement efforts.
Background: This Special Issue, Future Directions in Transitional Care Research, focuses on the approaches used and lessons learned by researchers conducting care transitions studies funded by the Patient-Centered Outcomes Research Institute (PCORI). PCORI’s approach to transitional care research augments prior research by encouraging researchers to focus on head-to-head comparisons of interventions, the use of patient-centered outcomes, and the engagement of stakeholders throughout the research process. Objectives: This paper introduces the themes and topics addressed by the articles that follow, which are focused on opportunities and challenges involved in conducting patient-centered clinical comparative effectiveness research in transitional care. It provides an overview of the state of the care transitions field, a description of PCORI’s programmatic objectives, highlights of the patient and stakeholder engagement activities that have taken place during the course of these studies, and a brief overview of PCORI’s Transitional Care Evidence to Action Network, a learning community designed to foster collaboration between investigators and their research teams and enhance the collective impact of this body of work. Conclusions: The papers in this Special Issue articulate challenges, lessons learned, and new directions for measurement, stakeholder engagement, implementation, and methodological and design approaches that reflect the complexity of transitional care comparative effectiveness research and seek to move the field toward a more holistic understanding of transitional care that integrates social needs and lifespan development into our approaches to improving care transitions.
The role of systems in addressing the needs of elderly and chronically ill populations remains a far from universal way of thinking, much less practice, in health care. Re-engineering the current fragmented system to align providers, patients and payment models to facilitate proactive management of conditions associated with advanced age and/or one or more chronic diseases -rather than responding to costly consequences of a health care system optimized for acute care conditions -will be a major challenge for all stakeholders. There are, however, promising success stories that are taking place in the United States today that may provide a model for improvement. The authors define the issues faced by the health care providers and payers that arise when providing care for the elderly and those with chronic conditions -issues that threaten to overwhelm the financial and human health care resources that exist to serve these populations. They define innovative ways of thinking about systems of care, and provide examples of unique systems that have applied theory into practice. These successful leaders may offer lessons in proactively managing complex health conditions, overcoming communication barriers and using technology to complement the necessary human touch that is essential to health care delivery.
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