Patient and family engagement: a survey of US hospital practices.
Ontology highlight
ABSTRACT:
SUBMITTER: Herrin J
PROVIDER: S-EPMC4789699 | biostudies-other | 2016 Mar
REPOSITORIES: biostudies-other
Publications
Patient and family engagement: a survey of US hospital practices.
Herrin Jeph J Harris Kathleen G KG Kenward Kevin K Hines Stephen S Joshi Maulik S MS Frosch Dominick L DL
BMJ quality & safety 20150616 3
<h4>Background</h4>Patient and family engagement (PFE) in healthcare is an important element of the transforming healthcare system; however, the prevalence of various PFE practices in the USA is not known.<h4>Objective</h4>We report on a survey of hospitals in the USA regarding their PFE practices during 2013-2014.<h4>Results</h4>The response rate was 42%, with 1457 acute care hospitals completing the survey. We constructed 25 items to summarise the responses regarding key practices, which fell ...[more]
Similar Datasets
Project description:ObjectivePatient-centered clinical trial design and execution is becoming increasingly important. No best practice guidelines exist despite a key stakeholder declaration to create more effective engagement models. This study aims to gain a better understanding of attitudes and practices for engaging patient groups so that actionable recommendations may be developed.MethodsIndividuals from industry, academic institutions, and patient groups were identified through Clinical Trials Transformation Initiative and Drug Information Association rosters and mailing lists. Objectives, practices, and perceived barriers related to engaging patient groups in the planning, conduct, and interpretation of clinical trials were reported in an online survey. Descriptive and inferential statistical analysis of survey data followed a literature review to inform survey questions.ResultsSurvey respondents (n = 179) valued the importance of involving patient groups in research; however, patient group respondents valued their contributions to research protocol development, funding acquisition, and interpretation of study results more highly than those contributions were valued by industry and academic respondents (all p < .001). Patient group respondents placed higher value in open communications, clear expectations, and detailed contract execution than did non-patient group respondents (all p < .05). Industry and academic respondents more often cited internal bureaucratic processes and reluctance to share information as engagement barriers than did patient group respondents (all p < .01). Patient groups reported that a lack of transparency and understanding of the benefits of collaboration on the part of industry and academia were greater barriers than did non-patient group respondents (all p< .01).ConclusionsDespite reported similarities among approaches to engagement by the three stakeholder groups, key differences exist in perceived barriers and benefits to partnering with patient groups among the sectors studied. This recognition could inform the development of best practices for patient-centered clinical trial design and execution. Additional research is needed to define and optimize key success factors.
| S-EPMC4605726 | biostudies-literature
Project description:Patient and family engagement (PE) in healthcare planning and improvement achieves beneficial outcomes and is widely advocated, but a lack of resources is a critical barrier. Little prior research studied how organizations support engagement specifically in hospitals. We explored what constitutes hospital capacity for engagement. We conducted descriptive qualitative interviews and complied with criteria for rigour and reporting in qualitative research. We interviewed patient/family advisors, engagement managers, clinicians and executives at hospitals with high engagement activity, asking them to describe essential resources or processes. We used content analysis and constant comparison to identify themes and corresponding quotes and interpreted findings by mapping themes to two existing frameworks of PE capacity not specific to hospitals. We interviewed 40 patient/family advisors, patient engagement managers, clinicians and corporate executives from nine hospitals (two < 100 beds, four 100 + beds, three teaching). Four over-arching themes about capacity considered essential included resources, training, organizational commitment and staff support. Views were similar across participant and hospital groups. Resources included funding and people dedicated to PE and technology to enable communication and collaboration. Training encompassed initial orientation and project-specific training for patient/family advisors and orientation for new staff and training for existing staff on how to engage with patient/family advisors. Organizational commitment included endorsement from the CEO and Board, commitment from staff and continuous evaluation and improvement. Staff support included words and actions that conveyed value for the role and input of patient/family advisors. The blended, non-hospital-specific framework captured all themes. Hospitals of all types varied in the availability of funding dedicated to PE. In particular, reimbursement of expenses and compensation for time and contributions were not provided to patient/family advisors. In addition to skilled engagement managers, the role of clinician or staff champions was viewed as essential. The findings build on prior research that largely focused on PE in individual clinical care or research or in primary care planning and improvement. The findings closely aligned with existing frameworks of organizational capacity for PE not specific to hospital settings, which suggests that hospitals could use the blended framework to plan, evaluate and improve their PE programs. Further research is needed to yield greater insight into how to promote and enable compensation for patient/family advisors and the role of clinician or staff champions in supporting PE.
| S-EPMC8678957 | biostudies-literature
Project description:BackgroundPatient engagement (PE) in health-care planning and improvement is a growing practice. We lack evidence-based guidance for PE, particularly in hospital settings. This study explored how to optimize PE in hospitals.MethodsThis study was based on qualitative interviews with individuals in various roles at hospitals with high PE capacity. We asked how patients were engaged, rationale for approaches chosen and solutions for key challenges. We identified themes using content analysis.ResultsParticipants included 40 patient/family advisors, PE managers, clinicians and executives from 9 hospitals (2 < 100 beds, 4 100 + beds, 3 teaching). Hospitals most frequently employed collaboration (standing committees, project teams), followed by blended approaches (collaboration + consultation), and then consultation (surveys, interviews). Those using collaboration emphasized integrating perspectives into decisions; those using consultation emphasized capturing diverse perspectives. Strategies to support engagement included engaging diverse patients, prioritizing what benefits many, matching patients to projects, training patients and health-care workers, involving a critical volume of patients, requiring at least one patient for quorum, asking involved patients to review outputs, linking PE with the Board of Directors and championing PE by managers, staff and committee/team chairs.ConclusionThis research generated insight on concrete approaches and strategies that hospitals can use to optimize PE for planning and improvement. On-going research is needed to understand how to recruit diverse patients and best balance blended consultation/collaboration approaches.Patient or public contributionThree patient research partners with hospital PE experience informed study objectives and interview questions.
| S-EPMC8235895 | biostudies-literature
Project description:Objective:The Vanderbilt Children's Hospital launched an innovative Technology-Based Patient and Family Engagement Consult Service in 2014. This paper describes our initial experience with this service, characterizes health-related needs of families of hospitalized children, and details the technologies recommended to promote engagement and meet needs. Materials and Methods:We retrospectively reviewed consult service documentation for patient characteristics, health-related needs, and consultation team recommendations. Needs were categorized using a consumer health needs taxonomy. Recommendations were classified by technology type. Results:Twenty-two consultations were conducted with families of patients ranging in age from newborn to 15 years, most with new diagnoses or chronic illnesses. The consultation team identified 99 health-related needs (4.5 per consultation) and made 166 recommendations (7.5 per consultation, 1.7 per need). Need categories included 38 informational needs, 26 medical needs, 23 logistical needs, and 12 social needs. The most common recommendations were websites (50, 30%) and mobile applications (30, 18%). The most frequent recommendations by need category were websites for informational needs (39, 50%), mobile applications for medical needs (15, 40%), patient portals for logistical needs (12, 44%), and disease-specific support groups for social needs (19, 56%). Discussion:Families of hospitalized pediatric patients have a variety of health-related needs, many of which could be addressed by technology recommendations from an engagement consult service. Conclusion:This service is the first of its kind, offering a potentially generalizable and scalable approach to assessing health-related needs, meeting them with technologies, and promoting patient and family engagement in the inpatient setting.
| S-EPMC6080811 | biostudies-literature
Project description:PurposeWhile patient and family engagement may improve clinical care and research, current practices for engagement in Canadian intensive care units (ICUs) are unknown.MethodsWe developed and administered a cross-sectional questionnaire to ICU leaders of current engagement practices, facilitators, and barriers to engagement, and whether engagement was a priority, using to an ordinal Likert scale from 1 to 10.ResultsThe response rate was 53.4% (124/232). Respondents were from 11 provinces and territories, mainly from medical surgical ICUs (76%) and community hospitals (70%). Engagement in patient care included bedside care (84%) and bedside rounds (66%), presence during procedures/crises (65%), and survey completion (77%). Research engagement included ethics committees (36%), protocol review (31%), and knowledge translation (30%). Facilitators of engagement in patient care included family meetings (87%), open visitation policies (81%), and engagement as an institutional priority (74%). Support from departmental (43%) and hospital (33%) leadership was facilitator of research engagement. Time was the main barrier to engagement in any capacity. Engagement was a higher priority in patient care vs research (median [interquartile range], 8 [7-9] vs 3 [1-7]; P < 0.001) and in pediatric vs adult ICUs (10 [9-10] vs 8 [7-9]; P = 0.003). Research engagement was significantly higher in academic vs other ICUs (7 [5-8] vs 2 [1-4]; P < 0.001), and pediatric vs adult ICUs (7 [5-8] vs 3 [1-6]; P = 0.01).ConclusionsOrganizational strategies and institutional support were key facilitators of engagement. Engagement in patient care was a higher priority than engagement in research.
| S-EPMC9640777 | biostudies-literature
Project description:ObjectivesTo explore the extent of patient engagement in the development of best practice reports related to transitions from hospital to home.DesignScoping review.Data sourcesElectronic databases (MEDLINE, EMBASE, CINAHL, Scopus, Trip Database, DynaMed Plus and Public Health Plus) and multiple provincial regulatory agency and healthcare organisation websites.Eligibility criteriaWe included best practice reports related to the transition from hospital to a long-term care facility, community dwelling or rehabilitation centre. We included documents disseminated in English between 1947 and 2019.Data extraction and synthesisTwo independent reviewers screened for eligibility and one extracted and analysed data using a data extraction tool we developed based on established patient engagement frameworks. Only records actively engaging patients were analysed (n=11). The methodological quality of actively engaging patients was assessed using domain 2 (item 5) of stakeholder involvement from the Appraisal of Guidelines for Research and Evaluation II (AGREE II) tool.ResultsThe search yielded 1921 citations of which 23 met the inclusion criteria and were included for narrative synthesis. These were disseminated between 1995 and 2019, with 18 (78%) published after 2010. Most were conducted in North America (USA 43%, Canada 22%), Europe (UK 30%) and Australia (4%). Eleven (48%) actively involved patients, of which only two involved patients across all stages of development. Most involved patients through direct or indirect consultation. The mean AGREE II domain 2 item 5 score (of those that actively engaged patients) was 5.9 out of 7.ConclusionsOnly half of existing best practice reports related to the transition from hospital to home actively involved patients in report development. However, the extent of patient engagement has been increasing over time. More organisations should strive to engage patients throughout the best practice development process and provide patients with opportunities for shared leadership.
| S-EPMC6687029 | biostudies-literature
Project description:BackgroundPatient engagement (PE) in planning or improving hospital facilities or services is one approach for improving healthcare delivery and outcomes. To provide evidence on hospital capacity needed to support PE, we described the attributes of hospital PE capacity associated with clinical quality measures.MethodsWe conducted a cross-sectional survey of general and specialty hospitals based on the Measuring Organizational Readiness for Patient Engagement framework. We derived a PE capacity index measure, and with Multiple Correspondence Analysis, assessed the association of PE capacity with hospital type, and rates of hand-washing, C. difficile infection rates and 30-day readmission.ResultsRespondents (91, 66.4%) included general: < 100 beds (48.4%), 100+ beds (27.5%), teaching hospitals (11.0%) and specialty (13.2%) hospitals. Most featured PE in multiple clinical and corporate departments. Most employed PE in a range of Planning (design/improve facilities 94.5%, develop strategic plans 87.9%), Evaluation/Quality Improvement (accreditation 91.2%, develop QI plans 90.1%) and Service Delivery activities (develop information/communication aids 92.3%). Hospitals enabled PE with multiple supports (median 12, range 0 to 25), most often: 76.9% strategic plan recognizes PE, 74.7% patient/family advisory council, and 69.2% pool of patient volunteers; and least often: 30.0% PE staff, 26.4% PE funding and 16.5% patient reimbursement or 3.3% compensation. Hospitals employed a range of less (inform, consult) and more (involve, partner) active modes of engagement. Two variables accounted for 29.6% of variance in hospital PE capacity index measure data: number of departments featuring PE and greater use of active engagement modes. PE capacity was not associated with general hospital type or clinical quality measures.ConclusionsHospitals with fewer resources can establish favourable PE conditions by deploying PE widely and actively engaging patients. Healthcare policy-makers, hospital executives and PE managers can use these findings to allocate PE resources. Future research should explore how PE modes and methods impact clinical outcomes.
| S-EPMC7908767 | biostudies-literature
Project description:Patient/family education is an important component of nursing practice and is essential to the care of children newly diagnosed with cancer. Practices regarding patient/family education in Children's Oncology Group (COG) treatment centers have not been well described. We used an Internet-based survey to determine current patient/family educational practices at COG institutions; participation rate was 90.5% (201/222). Patient/family education was delivered primarily by an individual (rather than a team) at 43% of institutions. Advanced practice nurses had primary responsibility for providing education at 32% of institutions. "Fever" was the most frequently reported topic considered mandatory for inclusion in education for newly diagnosed patients. More than half of institutions reported using checklists and/or end-of-shift reports to facilitate health care team communication regarding patient/family education, and 77% reported using the "teach-back" method of assessing readiness for discharge. Thirty-seven percent of institutions reported delays in hospital discharge secondary to the need for additional teaching. An understanding of current practices related to patient/family education is the first step in establishing effective interventions to improve and standardize educational practices in pediatric oncology.
| S-EPMC5148722 | biostudies-literature
Project description:OBJECTIVE:Major gaps remain in our understanding of primary care patient safety. We describe a toolkit for measuring patient safety in family practices. METHODS:Six tools were used in 46 practices. These tools were as follows: National Health Service Education for Scotland Trigger Tool, National Health Service Education for Scotland Medicines Reconciliation Tool, Primary Care Safequest, Prescribing Safety Indicators, Patient Reported Experiences and Outcomes of Safety in Primary Care, and Concise Safe Systems Checklist. RESULTS:Primary Care Safequest showed that most practices had a well-developed safety climate. However, the trigger tool revealed that a quarter of events identified were associated with moderate or substantial harm, with a third originating in primary care and avoidable. Although medicines reconciliation was undertaken within 2 days in more than 70% of cases, necessary discussions with a patient/carer did not always occur. The prescribing safety indicators identified 1435 instances of potentially hazardous prescribing or lack of recommended monitoring (from 92,649 patients). The Concise Safe Systems Checklist found that 25% of staff thought that their practice provided inadequate follow-up for vulnerable patients discharged from hospital and inadequate monitoring of noncollection of prescriptions. Most patients had a positive perception of the safety of their practice although 45% identified at least one safety problem in the past year. CONCLUSIONS:Patient safety is complex and multidimensional. The Patient Safety Toolkit is easy to use and hosted on a single platform with a collection of tools generating practical and actionable information. It enables family practices to identify safety deficits that they can review and change procedures to improve their patient safety across a key sets of patient safety issues.
| S-EPMC7447126 | biostudies-literature
Project description:BackgroundDuring the past decade, patient engagement (PE) has attracted significant attention in the field of drug development. Readiness to accept the central importance of patients' knowledge and contributions has become evident. This study aimed to synthesize evidence on the current state of PE in drug development: what is actually being done and how.MethodsA systematic scoping review was conducted based on a PRISMA-informed protocol. Search was performed in PubMed, EMBASE and Web of Science, covering the period between 2011 and 2021. For analysis of extracted data, we developed a framework for analyzing PE in Drug Development. The Framework distinguishes a number of different PE types that take place at different stages of drug development and are characterized by the different degrees of power patients have in the process. It allowed us to assess depth and intensity of PE initiatives included in this review.ResultsMost included PE initiatives took place at the stage of designing studies (40 in total). At this stage drug development goals are already set, but the mode of reaching them has not yet been fully determined. PE initiatives on the finetuning details stage followed (16 in total). The finetuning details stage covers the last parts of the drug development trajectory, when only relatively minor issues are still open for patients' contributions. The least numerous were PE initiatives on the stage of setting up R&D program (13 in total). This stage refers to the early steps in drug development where PE has the potential to make the most impact on shaping the subsequent process. In terms of intensity of engagement, most PE initiatives included in this review align with consultation and involvement types, 26 and 30 initiatives, respectively. Partnership was less frequent in the published accounts of PE (13 initiatives).ConclusionsThis review delineated a contemporary landscape of PE in drug development. Although attention to PE in drug development is relatively recent, a wide range of PE practices has already been initiated. The results indicate the necessity of distinguishing between different types of PE in order to understand consequences of choices regarding depth and intensity of PE.
| S-EPMC9243835 | biostudies-literature