Involvement of information professionals in patient- and family-centered care initiatives: a scoping review.
Ontology highlight
ABSTRACT:
SUBMITTER: DeRosa AP
PROVIDER: S-EPMC6579588 | biostudies-literature | 2019 Jul
REPOSITORIES: biostudies-literature
Publications
Involvement of information professionals in patient- and family-centered care initiatives: a scoping review.
DeRosa Antonio P AP Baltich Nelson Becky B Delgado Diana D Mages Keith C KC Martin Lily L Stribling Judy C JC
Journal of the Medical Library Association : JMLA 20190701 3
<h4>Objective</h4>The goal of this scoping review was to collect data on patient- and family-centered care (PFCC) programs and initiatives that have included the direct involvement of librarians and information professionals to determine how librarians are involved in PFCC and highlight opportunities for librarians to support PFCC programs.<h4>Methods</h4>Systematic literature searches were conducted in seven scholarly databases in the information, medical, and social sciences. Studies were incl ...[more]
Similar Datasets
Project description:BACKGROUND:Many health care organizations around the world have implemented health information technologies (ITs) to enhance health service efficiency, effectiveness, and safety. Studies have demonstrated that promising outcomes of health IT initiatives can be obtained when patients and family members participate and engage in the adoption, use, and evaluation of these technologies. Despite knowing this, there is a lack of health care organizations using patient and family engagement strategies to enhance the use and adoption of health ITs, specifically. OBJECTIVE:This study aimed to answer the following three research questions (RQs): (1) what current frameworks or theories have been used to guide patient and family engagement in health IT adoption, use, implementation, selection, and evaluation?, (2) what studies have been done on patient and family engagement strategies in health IT adoption, use, implementation, selection, and evaluation?, and (3) what patient and family engagement frameworks, studies, or resources identified in the literature can be applied to health IT adoption, use, implementation, selection, and evaluation? METHODS:This scoping review used a five-step framework developed by Arksey and O'Malley and adapted by Levac et al. These steps include the following: (1) identifying the RQ, (2) identifying relevant studies, (3) selecting studies, (4) charting relevant data, and (5) summarizing and reporting the result. Retrieved academic and grey literature records were evaluated using a literature review software based on inclusion and exclusion criteria by two independent reviewers. If consensus was not achieved, two reviewers would resolve conflicts by discussion. Research findings and strategies were extracted from the studies and summarized in data tables. RESULTS:A total of 35 academic articles and 23 gray literature documents met the inclusion criteria. In total, 20 of the 35 included studies have been published since 2017. Frameworks found include the patient engagement framework developed by Healthcare Information and Management Systems Society and the patient and family engagement framework proposed by Carman et al. Effective strategies include providing patients with clear expectations and responsibilities and providing reimbursement for time and travel. The gray literature sources outlined key considerations for planning and supporting engagement initiatives such as providing patients with professional development opportunities, and embedding patients in existing governance structures. CONCLUSIONS:Several studies have reported their findings regarding successful strategies to engage patients and family members in health IT initiatives and the positive impact that can emerge when patients and family members are engaged in such initiatives in an effective manner. Currently, no framework has consolidated all of the key strategies and considerations that were found in this review to guide health care organizations when engaging patients and family members in a health IT-specific project or initiative. Further research to evaluate and validate the existing strategies would be of value.
| S-EPMC6806121 | biostudies-literature
Project description:BACKGROUND:Families play an important role meeting the care needs of individuals who require assistance due to illness and/or disability. Yet, without adequate support their own health and wellbeing can be compromised. The literature highlights the need for a move to family-centered care to improve the well-being of those with illness and/or disability and their family caregivers. The objective of this paper was to explore existing models of family-centered care to determine the key components of existing models and to identify gaps in the literature. METHODS:A scoping review guided by Arksey & O'Malley (2005) examined family-centered care models for diverse illness and age populations. We searched MEDLINE, PsycINFO, CINAHL and EMBASE for research published between 1990 to August 1, 2018. Articles describing the development of a family-centered model in any patient population and/or healthcare field or on the development and evaluation of a family-centered service delivery intervention were included. RESULTS:The search identified 14,393 papers of which 55 met our criteria and were included. Family-centered care models are most commonly available for pediatric patient populations (n?=?40). Across all family-centered care models, the consistent goal is to develop and implement patient care plans within the context of families. Key components to facilitate family-centered care include: 1) collaboration between family members and health care providers, 2) consideration of family contexts, 3) policies and procedures, and 4) patient, family, and health care professional education. Some of these aspects are universal and some of these are illness specific. CONCLUSIONS:The review identified core aspects of family-centred care models (e.g., development of a care plan in the context of families) that can be applied to all populations and care contexts and some aspects that are illness specific (e.g., illness-specific education). This review identified areas in need of further research specifically related to the relationship between care plan decision making and privacy over medical records within models of family centred care. Few studies have evaluated the impact of the various models on patient, family, or health system outcomes. Findings can inform movement towards a universal model of family-centered care for all populations and care contexts.
| S-EPMC6693264 | biostudies-literature
Project description:IntroductionFollowing a cancer diagnosis, patients and their caregivers face crucial decisions regarding goals of care and treatment, which have consequences that can persist throughout their cancer journey. To foster informed and value-driven treatment choices, evidence-based information on outcomes relevant to patients is needed. Traditionally, clinical studies have largely focused on a few concrete and easily measurable outcomes such as survival, disease progression and immediate treatment toxicities. These outcomes do not capture other important factors that patients consider when making treatment decisions. Patient-centred outcomes (PCOs) reflect the patients' individual values, preferences, needs and circumstances that are essential to directing meaningful and informed healthcare discussions. Often, however, these outcomes are not included in research protocols in a standardised and practical fashion. This scoping review will summarise the existing literature on PCOs in gastrointestinal (GI) cancer care as well as the tools used to assess these outcomes. A comprehensive list of these PCOs will be generated for future efforts to develop a core outcome set.Methods and analysisThis scoping review will follow Arksey and O'Malley's expanded framework for scoping reviews. We will systematically search Medline, Embase, CINAHL, Cochrane Library and APA PsycINFO databases for studies examining PCOs in the context of GI cancer. We will include studies published in or after the year 2000 up to the date of the final searches, with no language restrictions. Studies involving adult patients with GI cancers and discussion of any PCOs will be included. Opinion pieces, protocols, case reports and abstracts will be excluded. Two authors will independently perform two rounds of screening to select studies for inclusion. The data from full texts will be extracted, charted and summarised both quantitatively and qualitatively.Ethics and disseminationNo ethics approval is required for this scoping review. Results will be disseminated through scientific publication and presentation at relevant conferences.
| S-EPMC9198790 | biostudies-literature
Project description:BackgroundWorldwide, patient-centered care is becoming a widely used concept in medical practice, getting more and more attention because of its proven ability to improve quality of care and reduce costs. Although several studies show that patient-accessible electronic health records (PAEHRs) influence certain aspects of patient-centered care, the possible contribution of PAEHR implementation to patient-centered care as a comprehensive concept has not, to our knowledge, been structurally evaluated to date.ObjectiveThe objective of this study is to review whether and how the use of PAEHRs contributes to patient-centered care both in general and among specific population groups.MethodsWe followed PRISMA Extension for Scoping Reviews reporting guidelines. We identified literature in 5 databases, using the terms "patient-accessible medical records," "patient experiences," and "professional experiences" as key concepts. A total of 49 articles were included and analyzed with a charting code list containing 10 elements of patient-centered care.ResultsStudies were diverse in design, country of origin, functionalities of the investigated PAEHR, and target population. Participants in all studies were adults. Most studies reported positive influence of PAEHR use on patient-centered care; patient accessible health records were appreciated for their opportunity to empower patients, inform patients about their health, and involve patients in their own care. There were mixed results for the extent to which PAEHRs affected the relation between patients and clinicians. Professionals and patients in mental health care held opposing views concerning the impact of transparency, where professionals appeared more worried about potential negative impact of PAEHRs on the patient-clinician relationship. Their worries seemed to be influenced by a reluctant attitude toward patient-centered care. Disadvantaged groups appeared to have less access to and make less use of patient-accessible records than the average population but experienced more benefits than the average population when they actually used PAEHRs.ConclusionsThe review indicates that PAEHRs bear the potential to positively contribute to patient-centered care. However, concerns from professionals about the impact of transparency on the patient-clinician relationship as well as the importance of a patient-centered attitude need to be addressed. Potentially significant benefits for disadvantaged groups will be achieved only through easily accessible and user-friendly PAEHRs.
| S-EPMC7834934 | biostudies-literature
Project description:BACKGROUND:Interventions to improve patient-centered care for persons with multimorbidity are in constant growth. To date, the emphasis has been on two separate kinds of interventions, those based on a patient-centered care approach with persons with chronic disease and the other ones created specifically for persons with multimorbidity. Their effectiveness in primary healthcare is well documented. Currently, none of these interventions have synthesized a patient-centered care approach for care for multimorbidity. The objective of this project is to determine the particular elements of patient-centered interventions and interventions for persons with multimorbidity that are associated with positive health-related outcomes for patients. METHOD:A scoping review was conducted as the method supports the rapid mapping of the key concepts underpinning a research area and the main sources and types of evidence available. A five-stage approach was adopted: (1) identifying the research question; (2) identifying relevant studies; (3) selecting studies; (4) charting the data; and (5) collating, summarizing and reporting results. We searched for interventions for persons with multimorbidity or patient-centered care in primary care. Relevant studies were identified in four systematic reviews (Smith et al. (2012;2016), De Bruin et al. (2012), and Dwamena et al. (2012)). Inductive analysis was performed. RESULTS:Four systematic reviews and 98 original studies were reviewed and analysed. Elements of interventions can be grouped into three main types and clustered into seven categories of interventions: 1) Supporting decision process and evidence-based practice; 2) Providing patient-centered approaches; 3) Supporting patient self-management; 4) Providing case/care management; 5) Enhancing interdisciplinary team approach; 6) Developing training for healthcare providers; and 7) Integrating information technology. Providing patient-oriented approaches, self-management support interventions and developing training for healthcare providers were the most frequent categories of interventions with the potential to result in positive impact for patients with chronic diseases. CONCLUSION:This scoping review provides evidence for the adaption of patient-centered interventions for patients with multimorbidity. Findings from this scoping review will inform the development of a toolkit to assist chronic disease prevention and management programs in reorienting patient care.
| S-EPMC6001147 | biostudies-literature
Project description:INTRODUCTION:The collaborative care model is an approach providing care to those with mental health and addictions disorders in the primary care setting. There is a robust evidence base demonstrating its clinical and cost-effectiveness in comparison with usual care; however, the transitioning to this new paradigm of care has been difficult. While there are efforts to train and prepare healthcare professionals, not much is known about the current state of collaborative care training programmes. The objective of this scoping review is to understand how widespread these collaborative care education initiatives are, how they are implemented and their impacts. METHODS AND ANALYSIS:The scoping review methodology uses the established review methodology by Arksey and O'Malley. The search strategy was developed by a medical librarian and will be applied in eight different databases spanning multiple disciplines. A two-stage screening process consisting of a title and abstract scan and a full-text review will be used to determine the eligibility of articles. To be included, articles must report on an existing collaborative care education initiative for healthcare providers. All articles will be independently assessed for eligibility by pairs of reviewers, and all eligible articles will be abstracted and charted in duplicate using a standardised form. The extracted data will undergo a 'narrative review' or a descriptive analysis of the contextual or process-oriented data and simple quantitative analysis using descriptive statistics. ETHICS AND DISSEMINATION:Research ethics approval is not required for this scoping review. The results of this scoping review will inform the development of a collaborative care training initiative emerging from the Medical Psychiatry Alliance, a four-institution philanthropic partnership in Ontario, Canada. The results will also be presented at relevant national and international conferences and published in a peer-reviewed journal.
| S-EPMC5588937 | biostudies-literature
Project description:BackgroundMigrants experience disparities in healthcare quality, in particular women migrants. Despite international calls to improve healthcare quality for migrants, little research has addressed this problem. Patient-centred care (PCC) is a proven approach for improving patient experiences and outcomes. This study reviewed published research on PCC for migrants.MethodsWe conducted a scoping review by searching MEDLINE, CINAHL, SCOPUS, EMBASE and the Cochrane Library for English-language qualitative or quantitative studies published from 2010 to June 2019 for studies that assessed PCC for adult immigrants or refugees. We tabulated study characteristics and findings, and mapped findings to a 6-domain PCC framework.ResultsWe identified 581 unique studies, excluded 538 titles/abstracts, and included 16 of 43 full-text articles reviewed. Most (87.5%) studies were qualitative involving a median of 22 participants (range 10-60). Eight (50.0%) studies involved clinicians only, 6 (37.5%) patients only, and 2 (12.5%) both patients and clinicians. Studies pertained to migrants from 19 countries of origin. No studies evaluated strategies or interventions aimed at either migrants or clinicians to improve PCC. Eleven (68.8%) studies reported barriers of PCC at the patient (i.e. language), clinician (i.e. lack of training) and organization/system level (i.e. lack of interpreters). Ten (62.5%) studies reported facilitators, largely at the clinician level (i.e. establish rapport, take extra time to communicate). Five (31.3%) studies focused on women, thus we identified few barriers (i.e. clinicians dismissed their concerns) and facilitators (i.e. women clinicians) specific to PCC for migrant women. Mapping of facilitators to the PCC framework revealed that most pertained to 2 domains: fostering a healing relationship and exchanging information. Few facilitators mapped to the remaining 4 domains: address emotions/concerns, manage uncertainty, make decisions, and enable self-management.ConclusionsWhile few studies were included, they revealed numerous barriers of PCC at the patient, clinician and organization/system level for immigrants and refugees from a wide range of countries of origin. The few facilitators identified pertained largely to 2 PCC domains, thereby identifying gaps in knowledge of how to achieve PCC in 4 domains, and an overall paucity of knowledge on how to achieve PCC for migrant women.
| S-EPMC7318468 | biostudies-literature
Project description:BackgroundDespite ongoing efforts aimed to improve treatment engagement for people with substance-related disorders, evidence shows modest rates of utilization as well as client-perceived barriers to care. Patient-centered care (PCC) is one widely recognized approach that has been recommended as an evidence-based practice to improve the quality of substance use disorder treatment. PCC includes four core principles: a holistic and individualized focus to care, shared decision-making and enhanced therapeutic alliance.AimsThis scoping review aimed to explore which PCC principles have been described and how they have defined and measured among people with substance-related disorders.MethodsFollowing the iterative stages of the Arksey and O'Malley scoping review methodology, empirical (from Medline, Embase, PsycINFO, CINAHL and ISI Web of Science) and grey literature references were eligible if they focused on people accessing treatment for substance-related disorders and described PCC. Two reviewers independently screened the title/abstract and full-texts of references. Descriptive analyses and a directed content analysis were performed on extracted data.FindingsOne-hundred and forty-nine references met inclusion from the 2951 de-duplicated references screened. Therapeutic alliance was the most frequent principle of PCC described by references (72%); this was consistently defined by characteristics of empathy and non-judgment. Shared decision-making was identified in 36% of references and was primarily defined by client and provider strategies of negotiation in the treatment planning process. Individualized care was described by 30% of references and included individualized assessment and treatment delivery efforts. Holistic care was identified in 23% of references; it included an integrated delivery of substance use, health and psychosocial services via comprehensive care settings or coordination. Substance use and treatment engagement outcomes were most frequently described, regardless of PCC principle.ConclusionsThis review represents a necessary first step to explore how PCC has been defined and measured for people accessing substance use disorder treatment. The directed content analysis revealed population and context-specific evidence regarding the defining characteristics of PCC-principles that can be used to further support the implementation of PCC.
| S-EPMC6739978 | biostudies-literature
Project description:BackgroundPatients and their families have become more active in healthcare systems and research. The value of patient involvement is particularly relevant in the area of rare diseases, where patients face delayed diagnoses and limited access to effective therapies due to the high level of uncertainty in market approval and reimbursement decisions. It has been suggested that patient involvement may help to reduce some of these uncertainties. This review explored existing and proposed roles for patients, families, and patient organizations at each stage of the lifecycle of therapies for rare diseases (i.e., orphan drug lifecycle).MethodsA scoping review was conducted using methods outlined by Arksey and O'Malley. To validate the findings from the literature and identify any additional opportunities that were missed, a consultative webinar was conducted with members of the Patient and Caregiver Liaison Group of a Canadian research network.ResultsExisting and proposed opportunities for involving patients, families, and patient organizations were reported throughout the orphan drug lifecycle and fell into 12 themes: research outside of clinical trials; clinical trials; patient reported outcomes measures; patient registries and biorepositories; education; advocacy and awareness; conferences and workshops; patient care and support; patient organization development; regulatory decision-making; and reimbursement decision-making. Existing opportunities were not described in sufficient detail to allow for the level of involvement to be assessed. Additionally, no information on the impact of involvement within specific opportunities was found. Based on feedback from patients and families, documentation of existing opportunities within Canada is poor.ConclusionsOpportunities for patient, family, and patient organization involvement exist throughout the orphan drug lifecycle. However, based on the information found, it is not possible to determine which opportunities would be most effective at each stage.
| S-EPMC5741909 | biostudies-literature
Project description:BackgroundPatient-centered health care information systems (PHSs) enable patients to take control and become knowledgeable about their own health, preferably in a secure environment. Current and emerging PHSs use either a centralized database, peer-to-peer (P2P) technology, or distributed ledger technology for PHS deployment. The evolving COVID-19 decentralized Bluetooth-based tracing systems are examples of disease-centric P2P PHSs. Although using P2P technology for the provision of PHSs can be flexible, scalable, resilient to a single point of failure, and inexpensive for patients, the use of health information on P2P networks poses major security issues as users must manage information security largely by themselves.ObjectiveThis study aims to identify the inherent security issues for PHS deployment in P2P networks and how they can be overcome. In addition, this study reviews different P2P architectures and proposes a suitable architecture for P2P PHS deployment.MethodsA systematic literature review was conducted following PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) reporting guidelines. Thematic analysis was used for data analysis. We searched the following databases: IEEE Digital Library, PubMed, Science Direct, ACM Digital Library, Scopus, and Semantic Scholar. The search was conducted on articles published between 2008 and 2020. The Common Vulnerability Scoring System was used as a guide for rating security issues.ResultsOur findings are consolidated into 8 key security issues associated with PHS implementation and deployment on P2P networks and 7 factors promoting them. Moreover, we propose a suitable architecture for P2P PHSs and guidelines for the provision of PHSs while maintaining information security.ConclusionsDespite the clear advantages of P2P PHSs, the absence of centralized controls and inconsistent views of the network on some P2P systems have profound adverse impacts in terms of security. The security issues identified in this study need to be addressed to increase patients' intention to use PHSs on P2P networks by making them safe to use.
| S-EPMC8663665 | biostudies-literature