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International Journal of Clinical... Aug 2023Only 5-10% of all adverse drug reactions (ADRs) are reported. Mechanisms to support patient and public reporting offer numerous advantages to health care systems... (Review)
Review
BACKGROUND
Only 5-10% of all adverse drug reactions (ADRs) are reported. Mechanisms to support patient and public reporting offer numerous advantages to health care systems including increasing reporting rate. Theory-informed insights into the factors implicated in patient and public underreporting are likely to offer valuable opportunity for the development of effective reporting-interventions and optimization of existing systems.
AIM
To collate, summarize and synthesize the reported behavioral determinants using the theoretical domains framework (TDF), that influence patient and public reporting of ADRs.
METHOD
Cochrane, CINAHL, Web of science, EMBASE and PubMed were systematically searched on October 25th, 2021. Studies assessing the factors influencing public or patients reporting of ADRs were included. Full-text screening, data extraction and quality appraisal were performed independently by two authors. Extracted factors were mapped to TDF.
RESULTS
26 studies were included conducted in 14 countries across five continents. Knowledge, social/professional role and identity, beliefs about consequences, and environmental context and resources, appeared to be the most significant TDF domains that influenced patient and public behaviors regarding ADR reporting.
CONCLUSION
Studies included in this review were deemed of low risk of bias and allowed for identification of key behavioural determinants, which may be mapped to evidence-based behavioral change strategies that facilitate intervention development to enhance rates of ADR reporting. Aligning strategies should focus on education, training and further involvement from regulatory bodies and government support to establish mechanisms, which facilitate feedback and follow-ups on submitted reports.
Topics: Humans; Adverse Drug Reaction Reporting Systems; Drug-Related Side Effects and Adverse Reactions; Patients; Government; Pharmacovigilance
PubMed: 37247158
DOI: 10.1007/s11096-023-01591-z -
BMJ Open Sep 2023The development of learning health systems (LHSs) has often focused on optimally leveraging data. More attention should be paid to patient and public involvement or...
INTRODUCTION
The development of learning health systems (LHSs) has often focused on optimally leveraging data. More attention should be paid to patient and public involvement or community engagement in forming learning communities that work together to build LHS. This scoping review aims to identify facilitators of and barriers to involving patients and the public in building LHSs in community health services settings.
METHODS AND ANALYSIS
We will use the Joanna Briggs Institute's scoping review methodology. We will review literature in English published from 1 January 2007 to 31 December 2022. The databases that will be searched are MEDLINE, CINAHL, Embase, Web of Science, Scopus, AgeLine, PsycINFO and Web of Science. Key inclusion and exclusion criteria include the following: we will only consider a learning community in a community health services context (eg, home care, long-term care, primary care); we will exclude literature on acute care settings; and we will consider any research designs apart from big data analytics. We will review all sources, including university student theses and dissertations. The review will proceed in three steps: (1) we will identify keywords and index terms from the MEDLINE and CINAHL databases; (2) using the keywords and index terms identified in step (1), we will search other databases and (3) we will handsearch the reference lists of the selected literature and will search for grey literature using Google. Two research assistants will screen the titles and abstracts separately, with reference to the inclusion criteria. Two researchers will then assess the full text of selected studies, also in reference to the inclusion criteria. We will present the findings in a charting table and provide a narrative summary.
ETHICS AND DISSEMINATION
This work does not require ethics approval because the data for this scoping review are publicly available. The findings will be presented in a journal article and at conferences.
Topics: Humans; Learning Health System; Community Health Services; Patients; Home Care Services; Critical Care; Review Literature as Topic
PubMed: 37699624
DOI: 10.1136/bmjopen-2023-073837 -
Scientific Data Dec 2023Retrieval-based Clinical Decision Support (ReCDS) can aid clinical workflow by providing relevant literature and similar patients for a given patient. However, the...
Retrieval-based Clinical Decision Support (ReCDS) can aid clinical workflow by providing relevant literature and similar patients for a given patient. However, the development of ReCDS systems has been severely obstructed by the lack of diverse patient collections and publicly available large-scale patient-level annotation datasets. In this paper, we collect a novel dataset of patient summaries and relations called PMC-Patients to benchmark two ReCDS tasks: Patient-to-Article Retrieval (ReCDS-PAR) and Patient-to-Patient Retrieval (ReCDS-PPR). Specifically, we extract patient summaries from PubMed Central articles using simple heuristics and utilize the PubMed citation graph to define patient-article relevance and patient-patient similarity. PMC-Patients contains 167k patient summaries with 3.1 M patient-article relevance annotations and 293k patient-patient similarity annotations, which is the largest-scale resource for ReCDS and also one of the largest patient collections. Human evaluation and analysis show that PMC-Patients is a diverse dataset with high-quality annotations. We also implement and evaluate several ReCDS systems on the PMC-Patients benchmarks to show its challenges and conduct several case studies to show the clinical utility of PMC-Patients.
Topics: Humans; Decision Support Systems, Clinical; PubMed; Patients
PubMed: 38110415
DOI: 10.1038/s41597-023-02814-8 -
Drugs & Aging Oct 2023Dysphagia is increasingly common in older adults; it is especially prevalent in long-term care settings. Patients with dysphagia likely require pharmacologic treatment... (Review)
Review
Dysphagia is increasingly common in older adults; it is especially prevalent in long-term care settings. Patients with dysphagia likely require pharmacologic treatment for multiple comorbidities but may find it difficult or impossible to swallow oral medications. Administering crushed medications mixed with a soft food or liquid vehicle, or via a feeding tube, is a common strategy to circumvent swallowing difficulties in patients with dysphagia. However, inappropriate medication use and improper crushing technique can reduce the medication dose a patient receives, alter medication pharmacokinetics and pharmacodynamics, and compromise treatment efficacy and patient safety. Clinical judgment is needed to identify medications that can and cannot be crushed, select a crushing methodology and vehicle for administering crushed medications, and create a strategy for administering multiple medications. A coordinated effort from the entire care team-including physicians, pharmacists, nurses, advanced practice providers, speech therapists, patients, and caregivers-is necessary to develop and implement an individualized plan for administering medications to patients with dysphagia. This review details the current literature regarding the administration of medications that have been altered, such as by crushing tablets or opening capsules, for patients with dysphagia or who are receiving enteral feeding and provides recommendations on best practices.
Topics: Humans; Aged; Enteral Nutrition; Deglutition Disorders; Patients; Long-Term Care; Patient Safety
PubMed: 37707775
DOI: 10.1007/s40266-023-01056-y -
JMIR Aging Mar 2024Technology-related research on people with dementia and their carers often aims to enable people to remain living at home for longer and prevent unnecessary hospital... (Review)
Review
BACKGROUND
Technology-related research on people with dementia and their carers often aims to enable people to remain living at home for longer and prevent unnecessary hospital admissions. To develop person-centered, effective, and ethical research, patient and public involvement (PPI) is necessary, although it may be perceived as more difficult with this cohort. With recent and rapid expansions in health and care-related technology, this review explored how and with what impact collaborations between researchers and stakeholders such as people with dementia and their carers have taken place.
OBJECTIVE
This review aims to describe approaches to PPI used to date in technology-related dementia research, along with the barriers and facilitators and impact of PPI in this area.
METHODS
A scoping review of literature related to dementia, technology, and PPI was conducted using MEDLINE, PsycINFO, Embase, and CINAHL. Papers were screened for inclusion by 2 authors. Data were then extracted using a predesigned data extraction table by the same 2 authors. A third author supported the resolution of any conflicts at each stage. Barriers to and facilitators of undertaking PPI were then examined and themed.
RESULTS
The search yielded 1694 papers, with 31 (1.83%) being analyzed after screening. Most (21/31, 68%) did not make clear distinctions between activities undertaken as PPI and those undertaken by research participants, and as such, their involvement did not fit easily into the National Institute for Health and Care Research definition of PPI. Most of this mixed involvement focused on reviewing or evaluating technology prototypes. A range of approaches were described, most typically using focus groups or co-design workshops. In total, 29% (9/31) described involvement at multiple stages throughout the research cycle, sometimes with evidence of sharing decision-making power. Some (23/31, 74%) commented on barriers to or facilitators of effective PPI. The challenges identified often regarded issues of working with people with significant cognitive impairments and pressures on time and resources. Where reported, the impact of PPI was largely reported as positive, including the experiences for patient and public partners, the impact on research quality, and the learning experience it provided for researchers. Only 4 (13%) papers used formal methods for evaluating impact.
CONCLUSIONS
Researchers often involve people with dementia and other stakeholders in technology research. At present, involvement is often limited in scope despite aspirations for high levels of involvement and partnership working. Involving people with dementia, their carers, and other stakeholders can have a positive impact on research, patient and public partners, and researchers. Wider reporting of methods and facilitative strategies along with more formalized methods for recording and reporting on meaningful impact would be helpful so that all those involved-researchers, patients, and other stakeholders-can learn how we can best conduct research together.
Topics: Humans; Patients; Academies and Institutes; Altruism; Technology; Dementia
PubMed: 38437014
DOI: 10.2196/48292 -
BMC Public Health Jun 2023Patient and public involvement (PPI) is increasingly seen as something that is integral to research and of importance to research funders. There is general recognition... (Review)
Review
INTRODUCTION
Patient and public involvement (PPI) is increasingly seen as something that is integral to research and of importance to research funders. There is general recognition that PPI is the right thing to do for both moral and practical reasons. The aim of this review of reviews is to examine how PPI can be done 'properly' by looking at the evidence that exists from published reviews and assessing it against the UK Standards for Public Involvement in Research, as well as examining the specific features of population health research that can make PPI more challenging.
METHODS
A review of reviews and development of best practice guidance was carried out following the 5-stage Framework Synthesis method.
RESULTS
In total 31 reviews were included. There is a lack of current research or clarity around Governance and Impact when findings are mapped against UK Standards for Public Involvement in Research. It was also clear that there is little knowledge around PPI with under-represented groups. There are gaps in knowledge about how to ensure key specific attributes of population health research are addressed for PPI team members - particularly around how to deal with complexity and the data-driven nature of the research. Four tools were produced for researchers and PPI members to further improve their PPI activity within population health research and health research more generally, including a framework of recommended actions to address PPI in population health research, and guidance on integrating PPI based on the UK Standards for Public Involvement in Research.
CONCLUSIONS
Facilitating PPI in population health research is challenging due to the nature of this type of research and there is far less evidence on how to do PPI well in this context. The tools can help researchers identify key aspects of PPI that can be integrated when designing PPI within projects. Findings also highlight specific areas where more research or discussion is needed.
Topics: Humans; Research Design; Research Personnel; Patients; Knowledge; Population Health
PubMed: 37391764
DOI: 10.1186/s12889-023-15937-9 -
Experimental Biology and Medicine... Dec 2023We present a pipeline in which machine learning techniques are used to automatically identify and evaluate subtypes of hospital patients admitted between 2017 and 2021...
We present a pipeline in which machine learning techniques are used to automatically identify and evaluate subtypes of hospital patients admitted between 2017 and 2021 in a large UK teaching hospital. Patient clusters are determined using routinely collected hospital data, such as those used in the UK's National Early Warning Score 2 (NEWS2). An iterative, hierarchical clustering process was used to identify the minimum set of relevant features for cluster separation. With the use of state-of-the-art explainability techniques, the identified subtypes are interpreted and assigned clinical meaning, illustrating their robustness. In parallel, clinicians assessed intracluster similarities and intercluster differences of the identified patient subtypes within the context of their clinical knowledge. For each cluster, outcome prediction models were trained and their forecasting ability was illustrated against the NEWS2 of the unclustered patient cohort. These preliminary results suggest that subtype models can outperform the established NEWS2 method, providing improved prediction of patient deterioration. By considering both the computational outputs and clinician-based explanations in patient subtyping, we aim to highlight the mutual benefit of combining machine learning techniques with clinical expertise.
Topics: Humans; Cluster Analysis; Machine Learning; Inpatients; Forecasting
PubMed: 38102763
DOI: 10.1177/15353702231214253 -
The Permanente Journal Dec 2023Health care is sometimes called a "team sport," yet patients were traditionally not considered to be "on the team" in medicine. In 2001, the Institute of Medicine (now...
Health care is sometimes called a "team sport," yet patients were traditionally not considered to be "on the team" in medicine. In 2001, the Institute of Medicine (now National Academy of Medicine) published its seminal book , in which patient-centered care was identified as 1 of 6 quality aims. Many organizations have since included patient-centered care as an important aspect of quality, including The Joint Commission, Centers for Medicare and Medicaid, and many large employers. In the past 10 years, the focus on patient-centered care has expanded in the Kaiser Permanente, Southern California region to include innovative ways for patients to collaborate with health care teams to codesign improvement efforts that are truly patient-centered. We will describe 3 important approaches that have greatly increased the patient-centeredness of our organization: individual patient approaches; adding patients onto health care teams; and effectively utilizing patient and family advisory councils. We will provide examples of how all health care organizations can better partner with their patients to improve their ability to provide higher quality, safer, more equitable, and affordable health care. The slogan "Nothing About Patients Without Patients" was an early rallying cry of the patient engagement movement. It conveyed the idea that as with everything else in our society, patients now expect to have a say in the design and implementation of their care. We show that this is not only possible, but also highly effective and even necessary to improving care.
Topics: Aged; Humans; United States; Medicare; Patients; Delivery of Health Care; Patient-Centered Care; Medicaid
PubMed: 37927043
DOI: 10.7812/TPP/23.103 -
Embedding Patient-Centricity by Collaborating with Patients to Transform the Rare Disease Ecosystem.Pharmaceutical Medicine Jul 2023What is patient-centricity? In some contexts, it has been associated with targeting therapies based on biomarkers or enabling healthcare access. There has been a surge...
What is patient-centricity? In some contexts, it has been associated with targeting therapies based on biomarkers or enabling healthcare access. There has been a surge in patient-centricity publications, and in many cases for the biopharmaceutical industry, patient engagement is used to endorse pre-held assumptions at a specific moment in time. Rarely is patient engagement used to drive business decisions. Here we describe an innovative partnership between Alexion, AstraZeneca Rare Disease and patients that allowed a deeper understanding of the biopharmaceutical stakeholder ecosystem and an empathic understanding of each patient's and caregiver's lived experience. Alexion's decision to build patient-centricity frameworks resulted in the formation of two unique organisation design platforms: STAR (Solutions To Accelerate Results for patients) and LEAP (Learn, Evolve, Activate and deliver for Patients) Immersive Simulations. These interconnected programmes required cultural, global, and organisational shifts. STAR generates global patient insights that are embedded in drug candidate and product strategies while helping to establish enterprise foundational alignment and external stakeholder engagement plans. LEAP Immersive Simulations produce detailed country-level patient and stakeholder insights that contribute to an empathetic understanding of each patient's lived experience, support country medicine launches and provide ideas to have a positive impact along the patient journey. Combined, they deliver integrated, cross-functional insights, patient-centric decision making, an aligned patient journey, and 360° stakeholder activation. Throughout these processes, the patient is empowered to dictate their needs and validate the proposed solutions. This is not a patient engagement survey. This is a partnership where the patient co-authors strategies and solutions.
Topics: Humans; Ecosystem; Rare Diseases; Patients; Health Services Accessibility; Biological Products
PubMed: 37142887
DOI: 10.1007/s40290-023-00474-y -
Journal of Medical Internet Research Oct 2023Although the value of patient and public involvement and engagement (PPIE) activities in the development of new interventions and tools is well known, little guidance...
Although the value of patient and public involvement and engagement (PPIE) activities in the development of new interventions and tools is well known, little guidance exists on how to perform these activities in a meaningful way. This is particularly true within large research consortia that target multiple objectives, include multiple patient groups, and work across many countries. Without clear guidance, there is a risk that PPIE may not capture patient opinions and needs correctly, thereby reducing the usefulness and effectiveness of new tools. Mobilise-D is an example of a large research consortium that aims to develop new digital outcome measures for real-world walking in 4 patient cohorts. Mobility is an important indicator of physical health. As such, there is potential clinical value in being able to accurately measure a person's mobility in their daily life environment to help researchers and clinicians better track changes and patterns in a person's daily life and activities. To achieve this, there is a need to create new ways of measuring walking. Recent advancements in digital technology help researchers meet this need. However, before any new measure can be used, researchers, health care professionals, and regulators need to know that the digital method is accurate and both accepted by and produces meaningful outcomes for patients and clinicians. Therefore, this paper outlines how PPIE structures were developed in the Mobilise-D consortium, providing details about the steps taken to implement PPIE, the experiences PPIE contributors had within this process, the lessons learned from the experiences, and recommendations for others who may want to do similar work in the future. The work outlined in this paper provided the Mobilise-D consortium with a foundation from which future PPIE tasks can be created and managed with clearly defined collaboration between researchers and patient representatives across Europe. This paper provides guidance on the work required to set up PPIE structures within a large consortium to promote and support the creation of meaningful and efficient PPIE related to the development of digital mobility outcomes.
Topics: Humans; Digital Technology; Patient Participation; Patients; Outcome Assessment, Health Care; Europe
PubMed: 37889531
DOI: 10.2196/44206