Background
Realizing patient partnership in research requires a shift from patient participation in ancillary roles to engagement as contributing members of research teams. While engaging patient ...partners is often discussed, impact is rarely measured.
Objective
Our primary aim was to conduct a scoping review of the impact of patient partnership on research outcomes. The secondary aim was to describe barriers and facilitators to realizing effective partnerships.
Search Strategy
A comprehensive bibliographic search was undertaken in EBSCO CINAHL, and Embase, MEDLINE and PsycINFO via Ovid. Reference lists of included articles were hand‐searched.
Inclusion Criteria
Included studies were: (a) related to health care; (b) involved patients or proxies in the research process; and (c) reported results related to impact/evaluation of patient partnership on research outcomes.
Data Extraction and Synthesis
Data were extracted from 14 studies meeting inclusion criteria using a narrative synthesis approach.
Main Results
Patient partners were involved in a range of research activities. Results highlight critical barriers and facilitators for researchers seeking to undertake patient partnerships to be aware of, such as power imbalances between patient partners and researchers, as well as valuing of patient partner roles.
Discussion
Addressing power dynamics in patient partner‐researcher relationships and mitigating risks to patient partners through inclusive recruitment and training strategies may contribute towards effective engagement. Further guidance is needed to address evaluation strategies for patient partnerships across the continuum of patient partner involvement in research.
Conclusions
Research teams can employ preparation strategies outlined in this review to support patient partnerships in their work.
Patient engagement in research is a dominant discourse in clinical research settings as it is seen as a move toward sustainable and equitable health care systems. In Canada, a key driver is the ...Strategy for Patient-Oriented Research of the Canadian Institutes of Health Research, which asserts that meaningful patient engagement can only be fostered when stakeholders understand its value. This study assessed researchers' perceptions of the meaning and value of patient engagement in research within a Canadian cardiovascular research network. In doing so, the secondary aim was to inform the development of a structured patient engagement initiative by identifying potential challenges and related mitigation strategies.
We employed a multi-method strategy involving electronic surveys and semi-structured telephone interviews with network research scientists across Canada. Interview data were analyzed using thematic and content analysis. Survey data were analyzed using descriptive statistics.
Thirty-eight electronic surveys (response rate =33%) and 16 interviews were completed with network members. Some participants were uncertain about the meaning and value of patient engagement. While voicing guarded support, four challenges relating to patient engagement were identified from the interviews: 1) identification of representative and appropriate patients, 2) uncertainty about the scope of patients' roles given concerns about knowledge discrepancies, 3) a perceived lack of evidence of the impact of patient engagement, and 4) the need for education and culture change as a prerequisite for patient engagement. Research scientists were largely concerned that patients untrained in science and tasked with conveying an authentic patient experience and being a conduit for the voices of others might unsettle a traditional model of conducting research.
Concerns about patient involvement in research were related to a lack of clarity about the meaning, process, and impact of involvement. This study highlights the need for education on the meaning of patient engagement, evidence of its impact, and guidance on practical aspects of implementation within this research community.
The purpose of this study was to conduct a systematic review answering the following questions: (a) what specific activities do caregivers (CGs) contribute to patients' self-care in heart failure ...(HF)?; and (b) how mature (or developed) is the science of the CG contribution to self-care?
MEDLINE, EMBASE, Cumulative Index of Nursing and Allied Health Literature (CINAHL), the Cochrane Library and ClinicalTrials.gov were searched using the terms heart failure and caregiv* as well as the keywords 'careers', 'family members' and 'lay persons' for studies published between 1948 and September 2012. Inclusion criteria for studies were: informal CGs of adult HF patients-either as dependent/independent variable in quantitative studies or participant in qualitative studies; English language. Exclusion criteria for studies were: formal CGs; pediatric, adult congenital, or devices or transplant CGs; mixed diagnosis; non-empiric reports or reports publishing duplicate results. Each study was abstracted and confirmed by two authors. After CG activities were identified and theoretically categorized, an analysis across studies was conducted.
Forty papers were reviewed from a pool of 283 papers. CGs contribute substantively to HF patients' self-care characterized from concrete (weighing the patient) to interpersonal (providing understanding). Only two studies attempted to quantify the impact of CGs' activities on patients' self-care reporting a positive impact. Our analysis provides evidence for a rapidly developing science that is based largely on observational research.
To our knowledge, this is the first systematic review to examine CGs' contributions in depth. Informal caregivers play a major role in HF self-care. Longitudinal research is needed to examine the impact of CGs' contributions on patient self-care outcomes.
There have been many attempts to improve how healthcare services are developed and delivered. Despite this, we know that there are many gaps and differences in practice and that these can lead to ...poor patient outcomes. In addition, there are also concerns that research is being undertaken that does not reflects the realities or needs of those using healthcare services, and that the use of research findings in practice is slow. As such, shared approaches to research, such as integrated knowledge translation, are being used.Integrated knowledge translation (IKT) is a research approach that brings together researchers, along with other stakeholders that have knowledge about a particular healthcare issue. Stakeholders may include healthcare providers and policy-makers. More recently, there has been a growing awareness of the need to include patients and members of the public within research processes. These collaborative and patient-oriented research approaches are seen as a way to develop research that tackles ongoing gaps in practice and reflect the insights, needs and priorities of those most affected by health research outcomes. Despite great support, little is known about how these major research approaches are connected, or how they may bring about improvements in the development and use of research evidence. In this paper, we examine how IKT and patient engagement processes are linked, as well as exploring where differences exist. Through this, we highlight opportunities for greater patient engagement in IKT research and to identify areas that need to be understood further.
Healthcare organizations across the world are being increasingly challenged to develop and implement services that are evidence-based and bring about improvement in patient and health service outcomes. Despite an increasing emphasis upon evidence-based practice, large variations in practice remain and gaps pervade in the creation and application of knowledge that improves outcomes. More collaborative models of health research have emerged over recent years, including integrated knowledge translation (IKT), whereby partnerships with key knowledge users are developed to enhance the responsiveness and application of the findings. Likewise, the meaningful engagement of patients, in addition to the inclusion of patient-reported outcomes and priorities, has been hailed as another mechanism to improve the relevance, impact and efficiency of research.Collectively, both IKT and patient engagement processes provide a vehicle to support research that can address health disparities and improve the delivery of effective and responsive healthcare services. However, the evidence to support their impact is limited and while these approaches are inextricably connected through their engagement focus, it is unclear how IKT and patient engagement processes are linked conceptually, theoretically, and practically. In this paper, we will begin to critically examine some of the linkages and tensions that exist between IKT and patient-engagement for research and will examine potential opportunities for IKT researchers as they navigate and enact meaningful partnerships with patients and the public.
Implantable cardioverter-defibrillators (ICDs) deliver therapy for life-threatening arrhythmias. Evidence suggests that ICD candidates have misconceptions regarding ICD therapy and unmet information ...needs. We undertook a pilot feasibility trial comparing a nurse-led educational intervention plus standard care, vs. standard pre-ICD implantation care. Secondary aims included examination of anxiety, quality of life, and shock anxiety.
Implantable cardioverter-defibrillator candidates were consented and randomized to standard pre-ICD implantation care vs. standard care plus a nurse-led educational intervention. The primary feasibility outcomes included: recruitment rate, consent rate, randomization rate, proportion of participants able to complete all questionnaires, time to deliver intervention, and intervention topics completion. At baseline, demographic and Patient-Reported Outcomes Measurement Information System (PROMIS) anxiety scores were collected. Four weeks post-ICD implantation, participants completed the PROMIS, Florida Patient Acceptance Survey (FPAS), and Florida Shock Anxiety Scale (FSAS). Twenty patients consented (10 per group). Feasibility targets were achieved for all but two outcomes: consent rate was 87% vs. 95% target, and completion of data collection measures was 85% vs. 90% target. Consent rate was lower than expected as one patient declined, and two could not be approached. Completion rate was lower than expected as two patients were lost to follow-up, and one did not receive an ICD during the study period, leading to incomplete post-implantation survey collections.
The results demonstrate the feasibility of conducting a trial comparing a nurse-led pre-implantation educational intervention to standard care in an outpatient setting. Further study to evaluate the effectiveness of this intervention on patient-reported outcomes is warranted.
Background
Every 4–7 years an implantable cardioverter defibrillator (ICD) pulse generator must be replaced surgically. This procedure is not without risk. In some cases, the risk versus benefit ...ratio may be against replacement. We aimed to synthesize the evidence on risks, benefits, and costs related to ICD replacement.
Methods
A systematic review was conducted using electronic databases from 2000 onward. Literature screening, quality appraisal, and data extraction were independently conducted by two reviewers. Outcomes included major and minor complications, ICD therapies, and costs, which were synthesized descriptively.
Results
Of 1,483 citations, 17 nonrandomized studies met criteria. Median rate of major complications was 4.05% (range 0.55–7.37%) and minor complications was 3.50% (range 0.36–7.37%). Without non‐ICD control groups, the true risk reduction provided by the ICD following replacement is unknown. Following ICD replacement, annualized rate of appropriate ICD therapy was 10.52% (range 2.42–75.00%). Of these, patients without therapies during their first generator life and those no longer meeting ICD criteria received appropriate therapies at nontrivial rates.
Conclusion
Rates of complications associated with ICD replacement are substantial. No study had nonreplacement groups, hence the true risk reduction provided by the ICD following replacement is unknown. Our analysis did not identify a subgroup at low risk of therapies following replacement. Shared discussions should occur with patients about the evidence, healthcare goals, risk tolerances, and feelings about life and death trade‐offs to enable high‐quality decisions about ICD replacement.
•Digital health interventions can improve health outcomes in chronic conditions.•Nurse scientists are well-positioned to lead this digital health intervention research.•Competencies for future nurse ...scientists to lead this complex research are required.•Competencies should focus on methodology, outcome selection, and partnership.
Chronic conditions are a major contributor to the burden of disease worldwide. Using innovative digital health technologies, nurse scientists are well-positioned to lead efforts to reduce the burden of chronic conditions on individuals, communities, and systems.
The purpose of this review was to summarize the outcomes commonly measured in nurse-led digital health interventions that target chronic conditions and pose recommendations for the education of future nurse scientists to lead these studies.
A rapid review of the literature was completed using CINAHL and Ovid Emcare. Studies were included if the research: a) was led by a nurse; b) described outcomes of a digital health intervention; and c) included any population with a prevalent chronic condition.
26 studies were included in this review. Nurse-led digital health interventions are being used to support and manage a range of chronic conditions in varied settings.
Digital health interventions are changing the delivery of healthcare for individuals living with chronic conditions. These interventions are bridging the gaps between the digital and physical worlds and are rapidly evolving.
The recommendations posed in this review reiterate the importance of robust content and methods education for nurse scientists to address future research needs in a digital era.
In Canada, approximately 13% of the population lives with multiple chronic conditions. Newcomers, including refugees, have the same or higher risk of developing chronic diseases as their host ...population. In 2015-2016, Canada welcomed almost 40, 000 newcomers from Syria. This study aimed to (1) understand adult newcomer health needs for self-management of non-infectious chronic conditions; and (2) identify strategies to improve access to health care services to meet these needs.
This study used a qualitative descriptive design. Interviews and focus groups were conducted with consenting newcomers, service providers and community agency administrators. Interview guides were developed with input from community partners and snowball sampling was used.
Participants included 22 Syrian newcomers and 8 service providers/administrators. Findings revealed the initial year of arrival as one of multiple adjustments, often rendering chronic disease management to a lower priority. Self-care and self-management were not routinely incorporated into newcomer lives though community health agencies were proactive in creating opportunities to learn self-management practices. Gaps in access to care were prevalent, including mental health services which typically were not well developed for trauma and post-traumatic stress disorder (PTSD), particularly for men. Newcomers expressed frustration with lengthy wait times and not being able to access specialists directly. Youth frequently played a key role in translation and disseminating information about services to their families.
Chronic disease management was a low priority for newcomers who were focussed on resettlement issues such as learning English or finding work. Provision of practical supports such as bus tickets, translation, and information about the healthcare system were identified as means of improving access to care.
Worldwide, more than 230 million adults have major noncardiac surgery each year. Although surgery can improve quality and duration of life, it can also precipitate major complications. Moreover, a ...substantial proportion of deaths occur after discharge. Current systems for monitoring patients postoperatively, on surgical wards and after transition to home, are inadequate. On the surgical ward, vital signs evaluation usually occurs only every 4-8 hours. Reduced in-hospital ward monitoring, followed by no vital signs monitoring at home, leads to thousands of cases of undetected/delayed detection of hemodynamic compromise. In this article we review work to date on postoperative remote automated monitoring on surgical wards and strategy for advancing this field. Key considerations for overcoming current barriers to implementing remote automated monitoring in Canada are also presented.
Chaque année, plus de 230 millions d’adultes à travers le monde subissent une chirurgie non cardiaque majeure. Si les interventions chirurgicales peuvent améliorer la qualité et prolonger la durée de la vie, elles peuvent aussi précipiter l’apparition de complications majeures. De plus, une proportion appréciable des décès se produit après la sortie de l’hôpital. Les systèmes actuels de surveillance des patients après l’opération, dans les services de chirurgie et après leur retour à la maison sont insuffisants. Lorsque le patient est hospitalisé dans le service de chirurgie, l’évaluation de ses signes vitaux n’est en général effectuée que toutes les 4 à 8 heures. Une surveillance réduite pendant l’hospitalisation, suivie de l’absence de surveillance des signes vitaux à la maison conduit à la non-détection ou à la détection tardive de milliers de cas de troubles hémodynamiques. Dans le présent article, nous passons en revue les travaux effectués à ce jour sur la surveillance postopératoire automatisée à distance dans les services de chirurgie et les stratégies envisageables pour favoriser le progrès dans ce domaine. Nous présentons également les éléments clés à considérer pour surmonter les obstacles actuels à la mise en œuvre de la surveillance automatisée à distance au Canada.
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