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Quality of patient, family, caregiver and public engagement in decision-making in healthcare systems: a scoping review protocol.

ABSTRACT: INTRODUCTION:To advance person- and family-centred healthcare, government initiatives have supported the engagement of patients and family caregivers in decision-making in healthcare systems. There is, however, no consensus on how to define success for such initiatives. This scoping review aims to identify the key elements for defining the quality of patient and family caregiver engagement in decision-making across the engagement domains (individual, community/organisation, system) of British Columbia's healthcare system. We will use those elements to develop a conceptual evaluation framework. METHODS AND ANALYSIS:This scoping review follows Arskey and O'Malley's methodology. (1) The research question was identified through team discussions. (2) Articles for data source will be identified using a librarian-informed search strategy for seven bibliographic databases as well as grey literature sources. (3) Selected articles will be relevant to the evaluation of patient and family caregiver engagement in healthcare systems. (4) Two researchers will independently extract data into predefined and emerging categories. (5) The researchers will reconcile and organise the identified elements. The research team's collective perspective will then refine the elements, and select, interpret and summarise the results. (6) Persons from key stakeholder groups will be consulted to refine the emergent conceptual framework. ETHICS AND DISSEMINATION:We will seek ethics approval for the stakeholder consultation. This study follows an integrated knowledge translation approach. The results will inform evaluation of the Patients as Partners Initiative of the British Columbia Ministry of Health, and will be disseminated as a scientific article, a research brief, and presentations at conferences and stakeholder meetings.

SUBMITTER: Hamilton C

PROVIDER: S-EPMC6858224 | biostudies-literature | 2019 Nov

REPOSITORIES: biostudies-literature

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Quality of patient, family, caregiver and public engagement in decision-making in healthcare systems: a scoping review protocol.

Hamilton Clayon C Snow M Elizabeth ME Clark Nancy N Gibson Shannon S Dehnadi Maryam M Lui Michelle M Koster Andrew A McLean Janet J Li Linda C LC

BMJ open 20191106 11

<h4>Introduction</h4>To advance person- and family-centred healthcare, government initiatives have supported the engagement of patients and family caregivers in decision-making in healthcare systems. There is, however, no consensus on how to define success for such initiatives. This scoping review aims to identify the key elements for defining the quality of patient and family caregiver engagement in decision-making across the engagement domains (individual, community/organisation, system) of Br ...[more]

PMID: 31699750

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Project description:BackgroundWith healthcare striving to shift to a more person-centered delivery model, patient and family involvement must have a bigger role in shaping this. While many initiatives involving patients and family members focus on self-care, a broader understanding of patient participation is necessary. Ensuring a viable and sustainable critical number of qualified patients and family members to support this shift will be of utmost importance. The purpose of this study was to understand how health systems are intentionally investing in the training and skill development of patients and family members.MethodsPatient co-investigators and researchers conducted a scoping review of the existing literature on methods adopted by healthcare systems to build the skills and capacity of patients to participate in healthcare decision-making using a recognized methodological framework. Six electronic databases were searched to identify studies. Two independent reviewers screened titles and abstracts and full-text papers for inclusion. The research team independently extracted data. Any disagreements were resolved by achieving consensus through discussion. Quantitative and qualitative content synthesis, as well as a quality assessment, was conducted.ResultsAfter eliminating duplicates, the search resulted in 9428 abstracts. Four hundred fifty-eight articles were reviewed and 15 articles were included. Four themes emerged: forums (33%), patient instructors (20%), workshops (33%), and co-design (13%). Four of the identified studies measured the impact and overall effectiveness of the respective programs. Examples of how patient and family members were supported (invested in) included advocacy training to support future involvement in engagement activities, a training program to conduct patient-led research, involvement in an immersive experience-based co-design initiative, and involvement in training pharmacy students. Overall, these studies found positive outcomes when patients and family members were recipients of these opportunities.ConclusionsThe results of this scoping review demonstrate that an evidence base around programs to advance patient engagement is largely absent. An opportunity exists for further research to identify strategies and measures to support patient engagement in healthcare decision-making.

Project description:BackgroundKnowledge translation (KT, also known as research utilization, and sometimes referring to implementation science) is a dynamic and iterative process that includes the synthesis, dissemination, exchange, and ethically sound application of knowledge to improve health. A KT intervention is one which facilitates the uptake of research. The long-term sustainability of KT interventions is unclear. We aimed to characterize KT interventions to manage chronic diseases that have been used for healthcare outcomes beyond 1 year or beyond the termination of initial grant funding.MethodsWe conducted a scoping review by searching MEDLINE, Embase, Cochrane Central Register of Controlled Trials (CENTRAL), Cumulative Index to Nursing and Allied Health Literature (CINAHL), and Campbell from inception until February 2013. We included experimental, quasi-experimental, and observational studies providing information on the sustainability of KT interventions for managing chronic diseases in adults and focusing on end-users including patients, clinicians, public health officials, health service managers, and policy-makers. Articles were screened and abstracted by two reviewers, independently. The data were charted and results described narratively.ResultsWe included 62 studies reported in 103 publications (total 260,688 patients) plus 41 companion reports after screening 12,328 titles and abstracts and 464 full-text articles. More than half of the studies were randomized controlled trials (RCTs). The duration of the KT intervention ranged from 61 to 522 weeks. Nine chronic conditions were examined across the studies, such as diabetes (34 %), cardiovascular disease (28 %), and hypertension (16 %). Thirteen KT interventions were reported across the studies. Patient education was the most commonly examined (20 %), followed by self-management (17 %). Most studies (61 %) focused on patient-level outcomes (e.g. disease severity), while 31 % included system-level outcomes (e.g. number of eye examinations), and 8 % used both. The interventions were aimed at the patient (58 %), health system (28 %), and healthcare personnel (14 %) levels.ConclusionsWe found few studies focusing on the sustainability of KT interventions. Most of the included studies focused on patient-level outcomes and patient-level KT interventions. A future systematic review can be conducted of the RCTs to examine the impact of sustainable KT interventions on health outcomes.

Project description:BackgroundSurrogate accuracy in predicting patient treatment preferences (i.e., what patients want) has been studied extensively, but it is not known whether surrogates can predict how patients want loved ones to make end-of-life decisions on their behalf.ObjectiveTo evaluate the ability of family members to correctly identify the preferences of seriously-ill patients regarding family involvement in decision making.DesignCross-sectional survey.ParticipantsTwenty-five pancreatic cancer and 27 amyotrophic lateral sclerosis (ALS) patients and their family members (52 dyads total).Main measuresPatients and family members completed the Decision Control Preferences (DCP) scale regarding patient preferences for family involvement in health care decisions using conscious and unconscious scenarios.Key resultsPatient and family member agreement was 56% (29/52 dyads) for the conscious scenario (kappa 0.29) and 46% (24/52 dyads) for the unconscious scenario (kappa 0.15). Twenty-four family members identified the patient's preference as independent in the unconscious scenario, but six of these patients actually preferred shared decision making and six preferred reliant decision making. In the conscious scenario, preference for independent decision making was associated with higher odds of patient-family agreement (AOR 5.28, 1.07-26.06). In the unconscious scenario, cancer patients had a higher odds of agreement than ALS patients (AOR 3.86; 95% CI 1.02-14.54).ConclusionFamily members were often unable to correctly identify patient preferences for family involvement in end-of-life decision making, especially when patients desired that decisions be made using the best-interest standard. Clinicians and family members should consider explicitly eliciting patient preferences for family involvement in decision making. Additional research is still needed to identify interventions to improve family member understanding of patient preferences regarding the decision-making process itself.

Project description:IntroductionAs the world's population ages, there has been increasing attention to developing health policies to support older adults. Engaging older adults in policy-making is one way to ensure that policy decisions align with their needs and priorities. However, ageist stereotypes often underestimate older adults' ability to participate in such initiatives. This scoping review aims to describe the characteristics and impacts of public engagement initiatives designed to help inform health policy-making for older adults.MethodsA systematic search of peer-reviewed and grey literature (English only) describing public engagement initiatives in health policy-making for older adults was conducted using six electronic databases, Google and the Participedia website. No geographical, methodological or time restrictions were applied to the search. Eligibility criteria were purposefully broad to capture a wide array of relevant engagement initiatives. The outcomes of interest included participants, engagement methods and reported impacts.ResultsThis review included 38 papers. The majority of public engagement initiatives were funded or initiated by governments or government agencies as a formal activity to address policy issues, compared to initiatives without a clear link to a specific policy-making process (e.g., research projects). While most initiatives engaged older adults as target participants, there was limited reporting on efforts to achieve participant diversity. Consultation-type engagement activities were most prevalent, compared to deliberative and collaborative approaches. Impacts of public engagement were frequently reported without formal evaluations. Notably, a few articles reported negative impacts of such initiatives.ConclusionThis review describes how public engagement practices have been conducted to help inform health policy-making for older adults and the documented impacts. The findings can assist policymakers, government staff, researchers and seniors' advocates in supporting the design and execution of public engagement initiatives in this policy sector.Patient or public contributionOlder adult partners from the McMaster University Collaborative for Health and Aging provided strategic advice throughout the key phases of this review, including developing a review protocol, data charting and synthesis and interpreting and presenting the review findings. This collaborative partnership was an essential aspect of this review, enhancing its relevance and meaningfulness for older adults.

Project description:IntroductionKnowledge translation (KT also known as research utilisation, translational medicine and implementation science) is a dynamic and iterative process that includes the synthesis, dissemination, exchange and ethically sound application of knowledge to improve health. After the implementation of KT interventions, their impact on relevant outcomes should be monitored. The objectives of this scoping review are to: (1) conduct a systematic search of the literature to identify the impact on healthcare outcomes beyond 1 year, or beyond the termination of funding of the initiative of KT interventions targeting chronic disease management for end-users including patients, clinicians, public health officials, health services managers and policy-makers; (2) identify factors that influence sustainability of effective KT interventions; (3) identify how sustained change from KT interventions should be measured; and (4) develop a framework for assessing sustainability of KT interventions.Methods and analysisComprehensive searches of relevant electronic databases (eg, MEDLINE, EMBASE, Cochrane Central Register of Controlled Trials), websites of funding agencies and websites of healthcare provider organisations will be conducted to identify relevant material. We will include experimental, quasi-experimental and observational studies providing information on the sustainability of KT interventions targeting chronic disease management in adults and focusing on end-users including patients, clinicians, public health officials, health services managers and policy-makers. Two reviewers will pilot-test the screening criteria and data abstraction form. They will then screen all citations, full articles and abstract data in duplicate independently. The results of the scoping review will be synthesised descriptively and used to develop a framework to assess the sustainability of KT interventions.Discussion and disseminationOur results will help inform end-users (ie, patients, clinicians, public health officials, health services managers and policy-makers) regarding the sustainability of KT interventions. Our dissemination plan includes publications, presentations, website posting and a stakeholder meeting.

Project description:BackgroundPublic health decision-making structures in England have transformed since the implementation of reforms in 2013, with responsibility for public health services and planning having shifted from the "health" boundary to local authority (LA; local government) control. This transformation may have interrupted flows of research evidence use in decision-making and introduced a new political element to public health decision-making. For generators of research evidence, understanding and responding to this new landscape and decision-makers' evidence needs is essential.MethodsWe conducted a systematic scoping review of the literature, drawing upon four databases and undertaking manual searching and citation tracking. Included studies were English-based, published in 2010 onwards, and were focused on public health decision-making, including the utilisation or underutilisation of research evidence use, in local (regional or sub-regional) areas. All studies presented empirical findings collected through primary research methods or through the reanalysis of existing primary data.ResultsFrom a total of 903 records, 23 papers from 21 studies were deemed to be eligible and were included for further data extraction. Three clear trends in evidence use were identified: (i) the primacy of local evidence, (ii) the important role of local experts in providing evidence and knowledge, and (iii) the high value placed on local evaluation evidence despite the varying methodological rigour. Barriers to the use of research evidence included issues around access and availability of applicable research evidence, and indications that the use of evidence could be perceived as a bureaucratic process. Two new factors resulting from reforms to public health structures were identified that potentially changed existing patterns of research evidence use and decision-making requirements: (i) greater emphasis among public health practitioners on the perceived uniqueness of LA areas and structures following devolution of public health into LAs and (ii) challenges introduced in responding to higher levels of local political accountability.ConclusionsThere is a need to better understand and respond to the evidence needs of decision-makers working in public health and to work more collaboratively in developing solutions to the underutilisation of research evidence in decision-making.

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Quality of patient, family, caregiver and public engagement in decision-making in healthcare systems: a scoping review protocol.

Publications

Quality of patient, family, caregiver and public engagement in decision-making in healthcare systems: a scoping review protocol.

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