Jacobi Elliott

‘Trying to find information is like hating yourself every day’: The collision of electronic information systems in transition with patients in transition

The consequences of parallel paper and electronic medical records (EMR) and their impact on informational continuity are examined. An interdisciplinary team conducted a multi-site, ethnographic field study and retrospective documentation review from January 2010 to December 2010. Three case studies from the sample of older patients with hip fractures who were transitioning across care settings were selected for examination. Analysis of data from interviews with care providers in each setting, field observation notes, and reviews of medical records yielded two themes. First, the lack of interoperability between electronic information systems has complicated, not eased providers’ ability to communicate with others. Second, rather than transforming the system, digital records have sustained health care’s ‘culture of documentation’. While some information is more accessible and communications streamlined, parallel paper and electronic systems have added to front line providers’ burden, not lessened it. Implementation of truly interoperable electronic health information systems need to be expedited to improve care continuity for patients with complex health-care needs, such as older patients with hip fractures.

Giving voice to older adults living with frailty and their family caregivers: engagement of older adults living with frailty in research, health care decision making, and in health policy

Plain English summaryThe paper discusses engaging older adults living with frailty and their family caregivers. Frailty is a state that puts an individual at a higher risk for poor health outcomes and death. Understanding whether a person is frail is important because treatment and health care choices for someone living with frailty may be different from someone who is not (i.e., who is fit). In this review, we discuss strategies and hurdles for engaging older adults living with frailty across three settings: research, health and social care, and policy. We developed this review using published literature, expert opinion, and stakeholder input (including citizens). Engaging frail older individuals will be challenging because of their vulnerable health state - but it can be done. Points of consideration specific to engaging this vulnerable population include:In any setting, family caregivers (defined to include family, friends, and other social support systems) play an important role in engaging and empowering older adults living with frailtyEngagement opportunities need to be flexible (e.g., location, time, type)Incentivizing engagement for researchers and citizens (financial and otherwise) may be necessaryThe education and training of citizens, health and social care providers, and researchers on engagement practicesPatient-centered care approaches should consider the specific needs of individuals living with frailty including end-of-life care and advanced care planningInfluencing policy can occur in many ways including participating at institutional, regional, provincial or national committees that relate to health and social care.AbstractOlder adults are the fastest growing segment of Canada’s population resulting in an increased number of individuals living with frailty. Although aging and frailty are not synonymous the proportion of those who are frail increases with age. Frailty is not defined by a single condition, but rather a health state characterized by an increased risk of physical, mental, or social decline, deterioration of health status, and death. Recognizing frailty is important because earlier detection allows for program implementation focused on prevention and management to reduce future hospitalization, improve outcomes, and enhance vitality and quality of life. Even though older adults living with frailty are significant users of health care resources, their input is under-represented in research, health care decision making, and health policy formulation. As such, engaging older adults living with frailty and their family caregivers is not only an ethical imperative, but their input is particularly important as health and social care systems evolve from single-illness focused to those that account for the complex and chronic needs that accompany frailty. In this review, we summarize existing literature on engaging older adults living with frailty and their family caregivers across three settings: research, health and social care, and policy. We discuss strategies and barriers to engagement, and ethical and cultural factors and implications. Although this review is mainly focused on Canada it is likely to be broadly applicable to many of the health systems in the developed world where aging and frailty pose important challenges.

Engaging older adults in healthcare research and planning: a realist synthesis

Plain English summaryThe importance of citizen involvement in healthcare research and planning has been widely recognized. There is however, a lack of understanding of how best to engage older adults, Canadas fastest growing segment of the population and biggest users of the healthcare system. We aimed to address this gap by developing an understanding of the engagement of older adults and their caregivers in healthcare research and planning. We conducted a review of available knowledge on engagement in healthcare research and planning with a focus on older adults and their caregivers. A five stage engagement framework emerged from this study that can be used to guide engagement efforts. We are continuing to collaborate with older adults and decision makers to develop and test strategies based on the presented framework.AbstractBackground The importance of engaging the community in healthcare research and planning has been widely recognized. Currently however, there is a limited focus on older adults, Canada’s fastest growing segment of the population and biggest users of the healthcare system. Objective This project aimed to develop an understanding of engagement of older adults and their caregivers in healthcare research and planning. Method A realist synthesis was conducted of the available knowledge on engagement in healthcare research and planning. The search methodology was informed by a framework for realist syntheses following five phases, including consultations with older adults. The synthesis included theoretical frameworks, and both peer-reviewed and grey literature. Results The search generated 15,683 articles, with 562 focusing on healthcare research and planning. The review lead to the development of a framework to engage older adults and their caregivers in healthcare research and planning. The 5 stages environment, plan, establish, build, and transition are accompanied with example context, mechanism, and outcomes to guide the use of this framework. Conclusion We have identified a framework that promotes meaningful engagement of older adults and their caregivers. We are continuing to collaborate with our community partners to further develop and evaluate engagement strategies that align with the presented framework.

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 Canadas 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.

Measured outcomes of chronic care programs for older adults: a systematic review

BackgroundWagner’s Chronic Care Model (CCM), as well as the expanded version (ECCM) developed by Barr and colleagues, have been widely adopted as frameworks for prevention and management of chronic disease. Given the high prevalence of chronic illness in older persons, these frameworks can play a valuable role in reorienting the health care system to better serve the needs of seniors. We aimed to identify and assess the measured goals of E/CCM interventions in older populations. In particular, our objective was to determine the extent to which published E/CCM initiatives were evaluated based on population, community, system and individual-level outcomes (including clinical, functional and quality of life measures).MethodsWe conducted a systematic search of the Science Citation Index Web of Knowledge search tool to gather articles published between January 2003 and July 2014. We included published CCM interventions that cited at least one of the fundamental papers that introduced and described the CCM and ECCM. Studies retained for review reported evaluations of senior-focused E/CCM initiatives in community-based settings, with the topic of “older adults” OR senior* OR elder* OR geriatric OR aged. The resulting 619 published articles were independently reviewed for inclusion by two researchers. We excluded the following: systematic reviews, meta-analyses, descriptions of proposed programs, and studies whose populations did not focus on seniors.ResultsWe identified 14 articles that met inclusion criteria. Studies used a wide range of measures, with little consensus between studies. All of the included studies used the original CCM. While a range of system-level and individual patient outcomes have been used to evaluate CCM interventions, no studies employed measures of population or community health outcomes.ConclusionsFuture efforts to test E/CCM interventions with seniors would be aided by more consistent outcome measures, greater attention to outcomes for the caregivers of older persons with chronic illness, and a greater focus on population and community impacts.

A review of Canadian and international dementia strategies

To inform future strategy development in Canada and other jurisdictions, we undertook an Internet search to identify existing national and Canadian provincial dementia strategies and their major themes. Twenty-two dementia strategies were identified through an Internet search, supplemented by hand searches of reference lists of retrieved documents. Thematic analysis identified 17 strategic themes; common themes included improved diagnoses and assessments, increased access to care, and improved education of the healthcare workforce. This review reinforces the importance of a multi-faceted response to dementia and illustrates that, despite variation in needs across populations and geographies, there are many common priorities. The strategic themes identified in this review may provide a useful starting point for the development of new national strategies or, alternatively, as a check to determine if important priority areas have been missed in strategy development.

The Rest of the Story: A Qualitative Study of Complementing Standardized Assessment Data with Informal Interviews with Older Patients and Families

BackgroundWhile standardized health assessments capture valuable information on patients’ demographic and diagnostic characteristics, health conditions, and physical and mental functioning, they may not capture information of most relevance to individual patients and their families. Given that patients and their informal caregivers are the experts on that patient’s unique context, it is important to ensure they are able to convey all relevant personal information to formal healthcare providers so that high-quality, patient-centered care may be delivered. This study aims to identify information that older patients and families consider important but that might not be included in standardized assessments.MethodsTranscripts were analyzed from 29 interviews relating to eight patients with hip fractures from three sites (large urban, smaller urban, rural) in two provinces in Canada. These interviews were conducted as part of a larger ethnographic study. Each transcript was analyzed by two researchers using content analysis. Results were reviewed in two focus group interviews with older adults and family caregivers. Identified themes were compared with items from two standardized assessments used in healthcare settings.ResultsThree broad themes emerged from the qualitative analysis that were not covered in the standardized assessments: informal caregiver and family considerations, insider healthcare knowledge, and patients’ healthcare attitudes and experiences. The importance of these themes was confirmed through focus group interviews. Focus group participants also emphasized the importance of conducting assessments in a patient-centered way and the importance of open-ended questions.ConclusionsA less structured interview approach may yield information that would otherwise be missed in standardized assessments. Combining both sources could yield better-informed healthcare planning and quality-improvement efforts.

Coordinating care for older adults in primary care settings: understanding the current context

BackgroundIt is well known that older adults are high users of the health care system. Older adults with chronic conditions receive care from multiple providers, across multiple settings, and this care is often unorganized and confusing. In 2005, Ontario established a model of inter-professional primary care (family health teams) with the aim of providing enhanced interdisciplinary primary care to patients. Primary care requires an in-depth understanding of the operations of primary care teams and their relationships with other community services. The aim of this study was to develop a deeper understanding of the current operations of two family health teams in Ontario, including their current processes for referrals, information sharing, and engagement of patients in decision-making.MethodsFocus group and individual semi-structured interviews with health care providers were conducted. Purposeful sampling was used to ensure information was obtained from different professional perspectives. Interviews were audio-recorded and transcribed verbatim. Using NVivo 10, data were analyzed using line by line thematic analysis techniques. A cluster technique was then applied to group similar codes into themes.ResultsThree focus group interviews (involving 4–6 health care providers/focus group) and six individual interviews were conducted with health care providers from two primary care teams and surrounding community care organizations. Six key themes were identified: 1) challenges engaging older adults in decisions about their care; 2) who is responsible for coordinating the care? 3) fragmented information sharing between health care providers; 4) lack of standardized referral processes and follow-up; 5) identifying services in the community for older adults; and 6) caring for older adults in rural communities.ConclusionsThe results of this study provide an in-depth understanding of the current context in which the primary care teams are currently operating. Improved primary care will require stronger processes of coordination, greater knowledge of and connections with other community services, and enhanced patient engagement processes. This information provides a helpful basis for implementing interventions in primary care.

Implementing and Evaluating a Model of Care Coordination in Primary Care for Older Adults using a Co-Design Approach

Background : Older Canadians with chronic diseases are the biggest users of the health care system. Primary health care (PHC) could play a central, coordinating role in assessing and managing older adults, but at present lacks specific strategies to fulfil this role. Priorities for enhanced care coordination in PHC include: 1) consistent processes to identify and assess older persons and create individual care plans aligned with risk levels; 2) improved care coordination and system navigation; 3) improved access to appropriate services; and 4) improved patient and caregiver engagement (Heckman et al., 2013; World Health Organization, 2008; Wagner, 2000; Goodwin et al., 2013). Aims : This study aims to understand how a model of risk-stratified care coordination for older adults can be developed and implemented in primary care. Information gathered will provide an in-depth understanding of: (1) the local context a region in Ontario, Canada (2) what referral pathways can link older patients to services appropriate for their level of risk, and (3) providers, patients and caregivers experiences to understand how the model could be modified and what factors are important for implementation in future primary care sites. Methods: This study used mixed methods, within a developmental evaluation approach (Patton, 2011). Ongoing focus group (n=6) and key informant interviews were conducted with patients (n=15), families (n=4), and primary care and community care providers (n=15) in three locations (rural and urban) in Ontario, Canada. Data were coded using a line by line, emergent approach. Risk-screening data (n=600) and service utilization were also collected and analyzed at the study sites. Results : A model of care coordination was developed through engagement of patients, families, and health care providers. Components of the model include: a) consistent screening (interRAI Assessment Urgency Algorithm) and referral processes; b) coordination of care through individualized care plans; and c) patient and caregiver engagement in decision-making. Implementation resulted in patient and provider awareness of resources for self-management, stronger linkages between PHC teams and community resources; improved patient and caregiver experiences and engagement in decision-making. Conclusions : A model of care coordination was developed and implemented in primary care through an ongoing, iterative process with older adults, caregivers, and health care providers. This process resulted in key principles necessary for improving care coordination in primary care for older adults and their caregivers. Limitations : This project was conducted in one Ontario region. Strategies may need to be tailored to the specific needs and resources of other communities. Suggestions for Future Research : The next phases of our work will involve implementing and evaluating this model in primary care sites that are not team-based settings.