Translating Precision Health for Pediatrics: A Scoping Review.
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ABSTRACT:
SUBMITTER: Subasri M
PROVIDER: S-EPMC10217253 | biostudies-literature | 2023 May
REPOSITORIES: biostudies-literature
Publications
Translating Precision Health for Pediatrics: A Scoping Review.
Subasri Mathushan M Cressman Celine C Arje Danielle D Schreyer Leighton L Cooper Erin E Patel Komal K Ungar Wendy J WJ Barwick Melanie M Denburg Avram A Hayeems Robin Z RZ
Children (Basel, Switzerland) 20230517 5
Precision health aims to personalize treatment and prevention strategies based on individual genetic differences. While it has significantly improved healthcare for specific patient groups, broader translation faces challenges with evidence development, evidence appraisal, and implementation. These challenges are compounded in child health as existing methods fail to incorporate the physiology and socio-biology unique to childhood. This scoping review synthesizes the existing literature on evide ...[more]
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Project description:BackgroundThe emergence of genetic and genomic sequencing approaches for pediatric patients has raised questions about the genomic health literacy levels, attitudes toward receiving genomic information, and use of this information to inform treatment decisions by pediatric patients and their parents. However, the methods to educate pediatric patients and their parents about genomic concepts through digital health interventions have not been well-established.ObjectiveThe primary objective of this scoping review is to investigate the current levels of genomic health literacy and the attitudes toward receiving genomic information among pediatric patients and their parents. The secondary aim is to investigate patient education interventions that aim to measure and increase genomic health literacy among pediatric patients and their parents. The findings from this review will be used to inform future digital health interventions for patient education.MethodsA scoping review using PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) guidelines and protocols was completed using the following databases: MEDLINE, Embase, CINAHL, and Scopus. Our search strategy included genomic information inclusive of all genetic and genomic terms, pediatrics, and patient education. Inclusion criteria included the following: the study included genetic, genomic, or a combination of genetic and genomic information; the study population was pediatric (children and adolescents <18 years) and parents of patients with pediatric illnesses or only parents of patients with pediatric illnesses; the study included an assessment of the knowledge, attitudes, and intervention regarding genomic information; the study was conducted in the last 12 years between 2008 and 2020; and the study was in the English language. Descriptive data regarding study design, methodology, disease population, and key findings were extracted. All the findings were collated, categorized, and reported thematically.ResultsOf the 4618 studies, 14 studies (n=6, 43% qualitative, n=6, 43% mixed methods, and n=2, 14% quantitative) were included. Key findings were based on the following 6 themes: knowledge of genomic concepts, use of the internet and social media for genomic information, use of genomic information for decision-making, hopes and attitudes toward receiving genomic information, experiences with genetic counseling, and interventions to improve genomic knowledge.ConclusionsThis review identified that older age is related to the capacity of understanding genomic concepts, increased genomic health literacy levels, and the perceived ability to participate in decision-making related to genomic information. In addition, internet-searching plays a major role in obtaining genomic information and filling gaps in communication with health care providers. However, little is known about the capacity of pediatric patients and their parents to understand genomic information and make informed decisions based on the genomic information obtained. More research is required to inform digital health interventions and to leverage the leading best practices to educate these genomic concepts.
| S-EPMC8742210 | biostudies-literature
Project description:IntroductionPrecision health is a nascent field of research that would benefit from clearer operationalisation and distinction from adjacent fields like precision medicine. This clarification is necessary to enable precision health science to tackle some of the most complex and significant health problems that are faced globally. There is a pressing need to examine the progress in human precision health research in the past 10 years and analyse this data to first, find similarities and determine discordances in how precision health is operationalised in the literature and second, identify gaps and future directions for precision health research.Methods and analysisTo define precision health and map research in this field, a scoping review will be undertaken and reported according to Preferred Reporting Items for Systematic Reviews and Meta-Analyses - Scoping Review Extension guidelines. Systematic searches of scientific databases (Medline, Embase, Scopus, Web of Science and PsycINFO) and grey literature sources (Google Scholar, Google Patents) identified 8053 potentially eligible articles published from 1 January 2010 to 30 June 2020. Following removal of duplicates, a total of 3190 articles were imported for screening. Article data will be extracted using a customised extraction template on Covidence and analysed descriptively using narrative synthesis.Ethics and disseminationEthics approval is not required. Findings will be disseminated through professional networks, conference presentations and publication in a scientific journal.
| S-EPMC7888329 | biostudies-literature
Project description:Machine learning is frequently being leveraged to tackle problems in the health sector including utilization for clinical decision-support. Its use has historically been focused on single modal data. Attempts to improve prediction and mimic the multimodal nature of clinical expert decision-making has been met in the biomedical field of machine learning by fusing disparate data. This review was conducted to summarize the current studies in this field and identify topics ripe for future research. We conducted this review in accordance with the PRISMA extension for Scoping Reviews to characterize multi-modal data fusion in health. Search strings were established and used in databases: PubMed, Google Scholar, and IEEEXplore from 2011 to 2021. A final set of 128 articles were included in the analysis. The most common health areas utilizing multi-modal methods were neurology and oncology. Early fusion was the most common data merging strategy. Notably, there was an improvement in predictive performance when using data fusion. Lacking from the papers were clear clinical deployment strategies, FDA-approval, and analysis of how using multimodal approaches from diverse sub-populations may improve biases and healthcare disparities. These findings provide a summary on multimodal data fusion as applied to health diagnosis/prognosis problems. Few papers compared the outputs of a multimodal approach with a unimodal prediction. However, those that did achieved an average increase of 6.4% in predictive accuracy. Multi-modal machine learning, while more robust in its estimations over unimodal methods, has drawbacks in its scalability and the time-consuming nature of information concatenation.
| S-EPMC9640667 | biostudies-literature
Project description:BackgroundThe 2014-2016 Ebola outbreak across West Africa was devastating, acting not only as a wake-up call for the global health community, but also as a catalyst for innovative change and global action. Improved infectious disease monitoring is the stepping-stone toward better disease prevention and control efforts, and recent research has revealed the potential of digital technologies to transform the field of global health. This scoping review aimed to identify which digital technologies may improve disease prevention and control, with regard to the 2014-2016 Ebola outbreak in West Africa.MethodsA search was conducted on PubMed, EBSCOhost and Web of Science, with search dates ranging from 2013 (01/01/2013) - 2017 (13/06/2017). Data was extracted into a summative table and data synthesized through grouping digital technology domains, using narrative and graphical methods.FindingsThe scoping review identified 82 full-text articles, and revealed big data (48%, n = 39) and modeling (26%, n = 21) technologies to be the most utilized within the Ebola outbreak. Digital technologies were mainly used for surveillance purposes (90%, n = 74), and key challenges were related to scalability and misinformation from social media platforms.InterpretationDigital technologies demonstrated their potential during the Ebola outbreak through: more rapid diagnostics, more precise predictions and estimations, increased knowledge transfer, and raising situational awareness through mHealth and social media platforms such as Twitter and Weibo. However, better integration into both citizen and health professionals' communities is necessary to maximise the potential of digital technologies.
| S-EPMC6344070 | biostudies-literature
Project description:ObjectiveTo determine progress and gaps in global precision health research, examining whether precision health studies integrate multiple types of information for health promotion or restoration.DesignScoping review.Data sourcesSearches in Medline (OVID), PsycINFO (OVID), Embase, Scopus, Web of Science and grey literature (Google Scholar) were carried out in June 2020.Eligibility criteriaStudies should describe original precision health research; involve human participants, datasets or samples; and collect health-related information. Reviews, editorial articles, conference abstracts or posters, dissertations and articles not published in English were excluded.Data extraction and synthesisThe following data were extracted in independent duplicate: author details, study objectives, technology developed, study design, health conditions addressed, precision health focus, data collected for personalisation, participant characteristics and sentence defining 'precision health'. Quantitative and qualitative data were summarised narratively in text and presented in tables and graphs.ResultsAfter screening 8053 articles, 225 studies were reviewed. Almost half (105/225, 46.7%) of the studies focused on developing an intervention, primarily digital health promotion tools (80/225, 35.6%). Only 28.9% (65/225) of the studies used at least four types of participant data for tailoring, with personalisation usually based on behavioural (108/225, 48%), sociodemographic (100/225, 44.4%) and/or clinical (98/225, 43.6%) information. Participant median age was 48 years old (IQR 28-61), and the top three health conditions addressed were metabolic disorders (35/225, 15.6%), cardiovascular disease (29/225, 12.9%) and cancer (26/225, 11.6%). Only 68% of the studies (153/225) reported participants' gender, 38.7% (87/225) provided participants' race/ethnicity, and 20.4% (46/225) included people from socioeconomically disadvantaged backgrounds. More than 57% of the articles (130/225) have authors from only one discipline.ConclusionsAlthough there is a growing number of precision health studies that test or develop interventions, there is a significant gap in the integration of multiple data types, systematic intervention assessment using randomised controlled trials and reporting of participant gender and ethnicity. Greater interdisciplinary collaboration is needed to gather multiple data types; collectively analyse big and complex data; and provide interventions that restore, maintain and/or promote good health for all, from birth to old age.
| S-EPMC8547511 | biostudies-literature
Project description:IntroductionPrecision public health is an emerging and evolving field. Academic communities are divided regarding terminology and definitions, and what the scope, parameters and goals of precision public health should include. This protocol summarises the procedure for a scoping review which aims to identify and describe definitions, terminology, uses of the term and concepts in current literature.Methods and analysisA scoping review will be undertaken to gather existing literature on precision public health. We will search CINAHL, PubMed, Scopus, Web of Science and Google Scholar, and include all documents published in English that mention precision public health. A critical discourse analysis of the resulting papers will generate an account of precision public health terminology, definitions and uses of the term and the use and meaning of language. The analysis will occur in stages: first, descriptive information will be extracted and descriptive statistics will be calculated in order to characterise the literature. Second, occurrences of the phrase 'precision public health' and alternative terms in documents will be enumerated and mapped, and definitions collected. The third stage of discourse analysis will involve analysis and interpretation of the meaning of precision public health, including the composition, organisation and function of discourses. Finally, discourse analysis of alternative phrases to precision public health will be undertaken. This will include analysis and interpretation of what alternative phrases to precision public health are used to mean, how the phrases relate to each other and how they are compared or contrasted to precision public health. Results will be grouped under headings according to how they answer the research questions.Ethics and disseminationNo ethical approval will be required for the scoping review. Results of the scoping review will be used as part of a doctoral thesis, and may be published in journals, conference proceedings or elsewhere.
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Project description:BackgroundGlobal public health action to address noncommunicable diseases (NCDs) requires new approaches. NCDs are primarily prevented and managed in the community where there is little investment in digital health systems and analytics; this has created a data chasm and relatively silent burden of disease. The nascent but rapidly emerging area of precision public health offers exciting new opportunities to transform our approach to NCD prevention. Precision public health uses routinely collected real-world data on determinants of health (social, environmental, behavioural, biomedical and commercial) to inform precision decision-making, interventions and policy based on social position, equity and disease risk, and continuously monitors outcomes - the right intervention for the right population at the right time. This scoping review aims to identify global exemplars of precision public health and the data sources and methods of their aggregation/application to NCD prevention.MethodsThe Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews (PRISMA-ScR) was followed. Six databases were systematically searched for articles published until February 2021. Articles were included if they described digital aggregation of real-world data and 'traditional' data for applied community, population or public health management of NCDs. Real-world data was defined as routinely collected (1) Clinical, Medication and Family History (2) Claims/Billing (3) Mobile Health (4) Environmental (5) Social media (6) Molecular profiling (7) Patient-centred (e.g., personal health record). Results were analysed descriptively and mapped according to the three horizons framework for digital health transformation.ResultsSix studies were included. Studies developed population health surveillance methods and tools using diverse real-world data (e.g., electronic health records and health insurance providers) and traditional data (e.g., Census and administrative databases) for precision surveillance of 28 NCDs. Population health analytics were applied consistently with descriptive, geospatial and temporal functions. Evidence of using surveillance tools to create precision public health models of care or improve policy and practice decisions was unclear.ConclusionsApplications of real-world data and designed data to address NCDs are emerging with greater precision. Digital transformation of the public health sector must be accelerated to create an efficient and sustainable predict-prevent healthcare system.
| S-EPMC9694563 | biostudies-literature
Project description:IntroductionPrecision health requires citizens that are empowered to orient health decisions towards their personal values, aware of the benefits and risks, and committed to sharing their personal data to trustful institutions. Effective citizen engagement initiatives are fundamental for the success of a precision health approach.ObjectiveTo provide an overview of citizen engagement initiatives in precision health in European Union (EU) member states.DesignScoping review.MethodsThe electronic databases PubMed, Web of Science, CINAHL and Embase were searched to include articles published in English. Furthermore, desk research was conducted in English, Dutch, French, Italian and Spanish. Articles or reports regarding ongoing initiatives of citizen engagement in precision health conducted in EU member states and published from January 2015 to July 2020 were considered eligible. A quality assessment of the retrieved entries using Critical Appraisal Skills Programme tool was conducted.ResultsWe identified nine documents, which reported eight ongoing citizen engagement initiatives, with substantial variability. Government agencies, non-governmental organisations and scientific societies were the main organisers and funders. Most of the initiatives were conducted in the UK. Genomics was the most emphasised aspect of precision health in these initiatives. Among the identified initiatives, both in-person and digital means were reported.ConclusionOur work provides an overview of current citizen engagement initiatives in the EU that can be useful for stakeholders interested in designing and developing precision health projects enriched by meaningful citizen participation.Prospero registration numberCRD42020193866.
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Project description:OBJECTIVES:Precision medicine (PM) aims to improve patient outcomes by stratifying or individualizing diagnosis and treatment decisions. Previous reviews found inconclusive evidence as to the cost-effectiveness of PM. The purpose of this scoping review was to describe current research findings on the cost-effectiveness of PM and to identify characteristics of cost-effective interventions. METHODS:We searched PubMed with a combination of terms related to PM and economic evaluations and included studies published between 2014 and 2017. RESULTS:A total of 83 articles were included, of which two-thirds were published in Europe and the USA. The majority of studies concluded that the PM intervention was at least cost-effective compared to usual care. However, the willingness-to-pay thresholds varied widely. Key factors influencing cost-effectiveness included the prevalence of the genetic condition in the target population, costs of genetic testing and companion treatment and the probability of complications or mortality. CONCLUSIONS:This review may help inform decisions about reimbursement, research and development of PM interventions.
| S-EPMC6867980 | biostudies-literature
Project description:Older adults, defined as those ≥60 years of age, are a growing population vulnerable to infections including severe acute respiratory syndrome coronavirus 2. Although immunization is a key to protecting this population, immunosenescence can impair responses to vaccines. Adjuvants can increase the immunogenicity of vaccine antigens but have not been systematically compared in older adults. We conducted a scoping review to assess the comparative effectiveness of adjuvants in aged populations. Adjuvants AS01, MF59, AS03, and CpG-oligodeoxynucleotide, included in licensed vaccines, are effective in older human adults. A growing menu of investigational adjuvants, such as Matrix-M and CpG plus alum, showed promising results in early phase clinical trials and preclinical studies. Most studies assessed only 1 or 2 adjuvants and no study has directly compared >3 adjuvants among older adults. Enhanced preclinical approaches enabling direct comparison of multiple adjuvants including human in vitro modeling and age-specific animal models may derisk and accelerate vaccine development for older adults.
| S-EPMC9376277 | biostudies-literature