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Involvement of information professionals in patient- and family-centered care initiatives: a scoping review.

ABSTRACT: Objective: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. Methods:Systematic literature searches were conducted in seven scholarly databases in the information, medical, and social sciences. Studies were included if they (1) described initiatives presented explicitly as PFCC programs and (2) involved an information professional or librarian in the PFCC initiative or program. Based on the definition of PFCC provided by the Institute for Patient- and Family-Centered Care, the authors developed a custom code sheet to organize data elements into PFCC categories or initiatives and outcomes. Other extracted data elements included how the information professional became involved in the program and a narrative description of the initiatives or programs. Results:All included studies (n=12) identified patient education or information-sharing as an integral component of their PFCC initiatives. Librarians were noted to contribute to shared decision-making through direct patient consultation, provision of health literacy education, and information delivery to both provider and patient with the goal of fostering collaborative communication. Conclusions:The synthesis of available evidence to date suggests that librarians and information professionals should focus on patient education and information-sharing to support both patients or caregivers and clinical staff. The burgeoning efforts in participatory care and inclusion of patients in the decision-making process pose a unique opportunity for librarians and information professionals to offer more personalized information services.

SUBMITTER: DeRosa AP

PROVIDER: S-EPMC6579588 | biostudies-literature | 2019 Jul

REPOSITORIES: biostudies-literature

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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]

PMID: 31258437

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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.

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.

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.

Project description:IntroductionPatient-centered care (PCC) has been declared as a desirable goal for health care in Latin American countries, but a coherent definition of what exactly PCC entails for clinical practice is missing. This article's aim was to identify how PCC is conceptualized in Latin American countries.MethodsScientific databases (MEDLINE, EMBASE, PsycINFO, CINAHL, Scielo, Scopus, Web of Science) and webpages of the ministries of health were searched, and experts were contacted for suggestions of literature. References were included if they contained one of a range of a priori defined keywords related to PCC in the title, were published between 2006 and 2021, and were carried out in or concerned Latin America. Definitions of PCC were extracted from the included articles and analyzed using deductive and inductive coding. Deductive coding was based on the integrative model of patient-centeredness, which unites the definitions of PCC in the international literature (mainly North America and Europe) and proposes 16 dimensions describing PCC.ResultsThirty-two articles were included in the analysis and about half of them were from Brazil. Numerous similarities were found between the integrative model of patient-centeredness and the definitions of PCC given in the selected literature. The dimensions of the integrative model of patient-centeredness that were least and most prominent in the literature were physical support and patient information, respectively. A differentiation between PCC and family-centered care (FCC) was observed. Definitions of PCC and FCC as well as their cited references were diverse.ConclusionA considerable overlap between the conceptualization of PCC in Latin America and the integrative model of patient-centeredness has been identified. However, there are substantial differences between countries in Latin America regarding the emphasis of research on PCC versus FCC and diverse conceptualizations of PCC and FCC exist.Patient contributionThis scoping review takes the patient's perspective based on the integrative model of patient-centeredness. Due to the study being a review, no patients, neither caregivers, nor members of the public, were involved.

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.

Project description:ObjectivesSepsis awareness and understanding are important aspects of prevention, recognition, and clinical management of sepsis. We conducted a scoping review to identify and map the literature related to sepsis awareness, general knowledge, and information-seeking behaviors with a goal to inform future sepsis research and knowledge translation campaigns.DesignScoping review.SettingUsing Arksey and O'Malley's methodological framework, we conducted a systematic search on May 3, 2021, across four databases (MEDLINE, EMBASE, CINAHL, and Education Research Complete). Title/abstract and full-text screening was done in duplicate. One researcher extracted the data for each included article, and a second researcher checked data accuracy. The protocol was registered on Open Science Framework ( https://doi.org/10.17605/OSF.IO/YX7AU ).SubjectsArticles related to sepsis awareness, knowledge, and information seeking behaviors among patients, public, and healthcare professionals.InterventionsNone.Measurements and main resultsOf 5,927 unique studies, 80 reported on patient ( n = 13/80;16.3%), public ( n = 15/80;18.8%), or healthcare professional (nurses, physicians, emergency medical technicians) ( n = 48/80; 60%) awareness and knowledge of sepsis. Healthcare professional awareness and knowledge of sepsis is high compared with patients/public. The proportion of patients/public who had heard of the term sepsis ranged from 2% (Japan) to 88.6% (Germany). The proportions of patients/public who correctly identified the definition of sepsis ranged from 4.2% (Singapore) to 92% (Sweden). The results from the included studies appear to suggest that patient/public awareness of sepsis gradually improved over time. We found that the definition of sepsis was inconsistent in the literature and that few studies reported on patient, public, or healthcare professional knowledge of sepsis risk factors. Most patient/public get their sepsis information from the internet, whereas healthcare professionals get it from their role in healthcare through job training or educational training.ConclusionsPatient, public, and healthcare professional awareness and knowledge of sepsis vary globally. Future research may benefit from a consistent definition as well as country-specific data to support targeted public awareness campaigns.

Project description:BackgroundPatients are important stakeholders in reducing low-value care, yet mechanisms for optimizing their involvement in low-value care remain unclear. To explore the role of patients in the development and implementation of Choosing Wisely recommendations to reduce low-value care and to assess the likelihood that existing patient resources will change patient health behaviour.MethodsThree phased mixed-methods study: 1) content analysis of all publicly available Choosing Wisely clinician lists and patient resources from the United States of America and Canada. Quantitative data was summarized with frequencies and free text comments were analyzed with qualitative thematic content analysis; 2) semi-structured telephone interviews with a purposive sample of representatives of professional societies who created Choosing Wisely clinician lists and members of the public (including patients and family members). Interviews were transcribed verbatim, and two researchers conducted qualitative template analysis; 3) evaluation of Choosing Wisely patient resources. Two public partners were identified through the Calgary Critical Care Research Network and independently answered two free text questions "would this change your health behaviour" and "would you discuss this material with a healthcare provider". Free text data was analyzed by two researchers using thematic content analysis.ResultsFrom the content analysis of 136 Choosing Wisely clinician lists, six reported patient involvement in their development. From 148 patient resource documents that were mapped onto a conceptual framework (Inform, Activate, Collaborate) 64% described patient engagement at the level of Inform (educating patients). From 19 interviews stakeholder perceptions of patient involvement in reducing low-value care were captured by four themes: 1) impact of perceived power dynamics on the discussion of low-value care in the clinical interaction, 2) how to communicate about low-value care, 3) perceived barriers to patient involvement in reducing low-value care, and 4) suggested strategies to engage patients and families in Choosing Wisely initiatives. In the final phase of work in response to the question "would this change your health behaviour" two patient partners agreed 'yes' on 27% of patient resources.ConclusionsOpportunities exist to increase patient and family participation in initiatives to reduce low-value care.

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.

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.

Dataset Information

Involvement of information professionals in patient- and family-centered care initiatives: a scoping review.

Publications

Involvement of information professionals in patient- and family-centered care initiatives: a scoping review.

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