Twelve Lessons Learned for Effective Research Partnerships Between Patients, Caregivers, Clinicians, Academic Researchers, and Other Stakeholders.

Research increasingly means that patients, caregivers, health professionals, other stakeholders, and academic investigators work in partnership. This requires effective collaboration rooted in mutual respect, involvement of all participants, and good communication. Having conducted such partnered research over multiple projects, and having recently completed a project together funded by the Patient-Centered Outcomes Research Institute, we collaboratively developed a list of 12 lessons we have learned about how to ensure effective research partnerships. To foster a culture of mutual respect, hold early in-person meetings, with introductions focused on motivation, offer appropriate orientation for everyone, and maintain awareness of individual and project goals. To actively involve all team members, it is important to ensure sufficient funding for everyone's participation, to ask for and recognize diverse contributions, and to seek the input of quiet members. To facilitate good communication, teams should carefully consider labels, avoid jargon and acronyms, judiciously use homogeneous and heterogeneous subgroups, and keep progress visible. In offering pragmatic, actionable lessons we have learned through our separate and shared experiences, we hope to help foster more patient-centered research via productive and enjoyable research collaborations.

Choosing Healthcare Options by Involving Canada's Elderly: a protocol for the CHOICE realist synthesis project on engaging older persons in healthcare decision-making.

INTRODUCTION: While patient and citizen engagement has been recognised as a crucial element in healthcare reform, limited attention has been paid to how best to engage seniors-the fastest growing segment of the population and the largest users of the healthcare system. To improve the healthcare services for this population, seniors and their families need to be engaged as active partners in healthcare decision-making, research and planning. This synthesis aims to understand the underlying context and mechanisms needed to achieve meaningful engagement of older adults in healthcare decision-making, research and planning. METHODS AND ANALYSIS: The CHOICE Knowledge Synthesis Project: Choosing Healthcare Options by Involving Canada's Elderly aims to address this issue by synthesising current knowledge on patient, family, and caregiver engagement. A realist synthesis will support us to learn from other patient and citizen engagement initiatives, from previous research, and from seniors, families and caregivers themselves. The synthesis will guide development or adaptation of a framework, leading to the development of best practice guidelines and recommendations for engagement of older people and their families and caregivers in clinical decision-making, healthcare delivery, planning and research. ETHICS AND DISSEMINATION: The components of this protocol involving consultation with patients or caregivers have received ethics clearance from the University of Waterloo, Office of Research Ethics (ORE#19094). After completion of the project, we will amalgamate the information collected into a knowledge synthesis report which will include best practice guidelines and recommendations for patient, family and caregiver engagement in clinical and health system planning and research contexts. RESULTS: Will be further disseminated to citizens, clinicians, researchers and policymakers with the help of our partners. TRIAL REGISTRATION NUMBER: CRD42015024749.

User-centered design and the development of patient decision aids: protocol for a systematic review.

BACKGROUND: Providing patient-centered care requires that patients partner in their personal health-care decisions to the full extent desired. Patient decision aids facilitate processes of shared decision-making between patients and their clinicians by presenting relevant scientific information in balanced, understandable ways, helping clarify patients' goals, and guiding decision-making processes. Although international standards stipulate that patients and clinicians should be involved in decision aid development, little is known about how such involvement currently occurs, let alone best practices. This systematic review consisting of three interlinked subreviews seeks to describe current practices of user involvement in the development of patient decision aids, compare these to practices of user-centered design, and identify promising strategies. METHODS/DESIGN: A research team that includes patient and clinician representatives, decision aid developers, and systematic review method experts will guide this review according to the Cochrane Handbook and PRISMA reporting guidelines. A medical librarian will hand search key references and use a peer-reviewed search strategy to search MEDLINE, EMBASE, PubMed, Web of Science, the Cochrane Library, the ACM library, IEEE Xplore, and Google Scholar. We will identify articles across all languages and years describing the development or evaluation of a patient decision aid, or the application of user-centered design or human-centered design to tools intended for patient use. Two independent reviewers will assess article eligibility and extract data into a matrix using a structured pilot-tested form based on a conceptual framework of user-centered design. We will synthesize evidence to describe how research teams have included users in their development process and compare these practices to user-centered design methods. If data permit, we will develop a measure of the user-centeredness of development processes and identify practices that are likely to be optimal. DISCUSSION: This systematic review will provide evidence of current practices to inform approaches for involving patients and other stakeholders in the development of patient decision aids. We anticipate that the results will help move towards the establishment of best practices for the development of patient-centered tools and, in turn, help improve the experiences of people who face difficult health decisions. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42014013241.

Partnerships with Patients and Family Caregivers.

This paper discusses six areas of hospital experience that can be improved: parking, hospital gowns, visiting hours, emergency room triage, hospital food, and care plans and discharge summaries. The areas were identified by a group of patients and family caregivers who reviewed large numbers of patient experiences and identified simple and easy to measure changes. Their recommended changes are called "Key Performance Targets."

The grey zones of birth and death.

RATIONALE: The promise of science to find clear and distinct boundaries for birth and death seems to have failed. The more science advances the more blurred the boundaries become. An overview of the history and the current trajectory suggests that the more we advance the greater the blurring. METHOD: The paper examines the history of scientific advance in the areas of birthing and dying and traces the path for the early promise for definitive answers to the new more uncertain and ambiguous positions we have come to. CONCLUSIONS: The problems associated with birthing and dying increasingly require humanistic philosophical discussion rather than scientific experimentation.

PROMs: a critical step, but only one of many.

Bringing the patient perspective into healthcare is now widely recognized as a somewhat-urgent need, and patient-reported outcome measures (PROMs) are an excellent example of attempts to do more of this. In this commentary, the author puts PROMs into a broader perspective and then speaks more specifically about this particular initiative. The question addressed is, how well can PROMs increase patients' participation in their care?

Reconnecting to care: a nursing initiative at the Baycrest Geriatric Health System.

This paper describes and examines a change program for nursing services in Complex: Continuing/Long Term Care (CC/LTC) at the Baycrest Centre for Geriatric Care in Toronto. It presents a brief history of the rise of CC/LTC services and the difficulties associated with them. In particular it claims that demographic, professional and insti tutional changes have produced a differentiated specialization of supports which tend to disregard some necessary aspects of daily support for patients, and devalue the role of direct care workers in these settings. The "Reconnecting to Care" (RTC) initiative is a response the to these changes by nurses at Baycrest. In detailing why Baycrest has decided to get back to basics and reconnect to care and how it has begun to do this, this paper provides an overview of the reasons for this initiative, a little of how it has been implemented so far, and some initial lessons for nursing leaders and others.

A framework for improving health in cities: a discussion paper.

This paper considers health in cities from the perspective of complex adaptive systems. This approach has a number of important implications for intervention that do not emerge in traditional accounts of cities and health. The paper reviews various accounts of the nature of cities and of health as well as the traditional urban health and Healthy Cities movements. It then provides a framework for intervention and tests it against an actual case study. It concludes that a complex adaptive systems framework opens up fresh possibilities for improving health in urban contexts.

Evolution of the determinants of health, health policy, and health information systems in Canada.

The history of health determinants in Canada influenced both the direction of data gathering about population health and government policies designed to improve health. Two competing movements marked these changes. The idea of health promotion grew out of the 1974 Lalonde report, which recognized that determinants of health went beyond traditional public health and medical care, and argued for the importance of socioeconomic factors. Research on health inequalities was led by the Canadian Institute for Advanced Research in the 1980s, which produced evidence of health inequalities along socioeconomic lines and argued for policy efforts in early child development. Both movements have shaped current information gathering and the policies that have come to be labeled "population health."