Digital Phenotyping and Patient-Generated Health Data for Outcome Measurement in Surgical Care: A Scoping Review

Digital phenotyping—the moment-by-moment quantification of human phenotypes in situ using data related to activity, behavior, and communications, from personal digital devices, such as smart phones and wearables—has been gaining interest. Personalized health information captured within free-living settings using such technologies may better enable the application of patient-generated health data (PGHD) to provide patient-centered care. The primary objective of this scoping review is to characterize the application of digital phenotyping and digitally captured active and passive PGHD for outcome measurement in surgical care. Secondarily, we synthesize the body of evidence to define specific areas for further work. We performed a systematic search of four bibliographic databases using terms related to “digital phenotyping and PGHD,” “outcome measurement,” and “surgical care” with no date limits. We registered the study (Open Science Framework), followed strict inclusion/exclusion criteria, performed screening, extraction, and synthesis of results in line with the PRISMA Extension for Scoping Reviews. A total of 224 studies were included. Published studies have accelerated in the last 5 years, originating in 29 countries (mostly from the USA, n = 74, 33%), featuring original prospective work (n = 149, 66%). Studies spanned 14 specialties, most commonly orthopedic surgery (n = 129, 58%), and had a postoperative focus (n = 210, 94%). Most of the work involved research-grade wearables (n = 130, 58%), prioritizing the capture of activity (n = 165, 74%) and biometric data (n = 100, 45%), with a view to providing a tracking/monitoring function (n = 115, 51%) for the management of surgical patients. Opportunities exist for further work across surgical specialties involving smartphones, communications data, comparison with patient-reported outcome measures (PROMs), applications focusing on prediction of outcomes, monitoring, risk profiling, shared decision making, and surgical optimization. The rapidly evolving state of the art in digital phenotyping and capture of PGHD offers exciting prospects for outcome measurement in surgical care pending further work and consideration related to clinical care, technology, and implementation.

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Scoping review protocol: bladder cancer in Nigeria: what are the gaps in clinical care and research?

BMJ Open ◽

10.1136/bmjopen-2020-041894 ◽

2021 ◽

Vol 11 (1) ◽

pp. e041894

Author(s):

Joyce Kibaru ◽

Pinky Kotecha ◽

Abdulkarim Muhammad Iya ◽

Beth Russell ◽

Muzzammil Abdullahi ◽

...

Keyword(s):

Bladder Cancer ◽

Scoping Review ◽

Low Income ◽

Clinical Care ◽

Grey Literature ◽

Case Series ◽

Cochrane Library ◽

Future Research ◽

Scoping Reviews ◽

Local Risk

IntroductionBladder cancer (BC) is the 10th common cancer worldwide and ranks seventh in Nigeria. This scoping review aims to identify the gaps in clinical care and research of BC in Nigeria as part of the development of a larger national research programme aiming to improve outcomes and care of BC.Methods and analysisThis review will be conducted according to Arksey and O’Malley scoping review methodology framework. The following electronic databases will be searched: Medline (using the PubMed interface), Ovid Gateway (Embase and Ovid), Cochrane library and Open Grey literature. Two independent reviewers will screen titles and abstracts and subsequently screen full-text studies for inclusion, any lack of consensus will be discussed with a third reviewer. Any study providing insight into the epidemiology or treatment pathway of BC (RCTs, observations, case series, policy paper) will be included. A data chart will be used to extract relevant data from the included studies. Results will be reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for scoping reviews. A consultation process will be carried out with a multidisciplinary team of Nigerian healthcare professionals, patients and scientists.Ethics and disseminationThe results will be disseminated through peer-reviewed publications. By highlighting the key gaps in the literature, this review can provide direction for future research and clinical guidelines in Nigeria (and other low-income and middle-income countries), where BC is more prevalent due to local risk factors and healthcare settings.

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How hospitalized patients evaluate and report their pain together with nurses: A scoping review

Nordic Journal of Nursing Research ◽

10.1177/20571585211013480 ◽

2021 ◽

pp. 205715852110134

Author(s):

Bente Dale Malones ◽

Sindre Sylte Kallmyr ◽

Vera Hage ◽

Trude Fløystad Eines

Keyword(s):

Scoping Review ◽

Pain Assessment ◽

Health Professionals ◽

Clinical Care ◽

Hospitalized Patients ◽

Assessment Tools ◽

Post Surgery ◽

Reliable Assessment ◽

Scoping Reviews ◽

The Relationship

Pain assessment tools are often used by patients to report their pain and by health professionals to assess patients’ reported pain. Although valid and reliable assessment of pain is essential for high-quality clinical care, there are still many patients who experience inappropriate pain management. The aim of this scoping review is to examine an overview of how hospitalized patients evaluate and report their pain in collaboration with nurses. Systematic searches were conducted, and ten research articles were included using the PRISMA guidelines for scoping reviews. Content analysis revealed four main themes: 1) the relationship between the patient and nurse is an important factor of how hospitalized patients evaluate and report their post-surgery pain, 2) the patient’s feelings of inconsistency in how pain assessments are administered by nurses, 3) the challenge of hospitalized patients reporting post-surgery pain numerically, and 4) previous experiences and attitudes affect how hospitalized patients report their pain. Pain assessment tools are suitable for nurses to observe and assess pain in patients. Nevertheless, just using pain assessment tools is not sufficient for nurses to obtain a comprehensive clinical picture of each individual patient with pain.

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Substance use disorders among African, Caribbean and Black (ACB) people in Canada: a scoping review protocol

BMJ Open ◽

10.1136/bmjopen-2019-028985 ◽

2019 ◽

Vol 9 (7) ◽

pp. e028985

Author(s):

Joseph D Nguemo ◽

Ngozi Iroanyah ◽

Winston Husbands ◽

LaRon E Nelson ◽

Geoffrey Maina ◽

...

Keyword(s):

Substance Use ◽

Substance Use Disorders ◽

Scoping Review ◽

Meta Analysis ◽

Grey Literature ◽

Bibliographic Databases ◽

Scoping Reviews ◽

African Caribbean ◽

Scientific Meetings ◽

English Articles

IntroductionPrevious research demonstrated that substance use continues to be one of the most complex and prevalent problems among African, Caribbean and Black (ACB) people. A number of studies were conducted to characterise substance use patterns in this population. To our knowledge, this is the first known review in Canada characterising substance use disorders on ACB people.This scoping review seeks to answer the following research questions: What characterises substance use disorders among ACB people in Canada? What are the different types and prevalence of substance use among ACB people in Canada? Do ACB people in Canada use more than one substance? What factors are associated with substance use among ACB people in Canada? What are the health and social impacts of substance use in ACB people in Canada?Methods and analysesThis study will use the methodological framework for scoping reviews developed by Arksey and O’Malley. We will search electronic bibliographic databases including Ovid MEDLINE, PsycINFO and CINAHL. We will limit our search to English articles published between 2000and2019. In addition, we will conduct a grey literature search. Two investigators will independently screen citations and full-text articles. Our findings will be reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analysis for scoping reviews guidelines. We will provide a descriptive summary of the studies and summarise the findings with respect to the outcomes and report any gaps that might require further investigation.Ethics and disseminationOur proposed study does not involve human participants; therefore, research ethics approval is not required. This study will provide evidence that will inform the development of strategies for appropriate interventions, as well as policy and further research. The results will be disseminated through publications in open access peer-reviewed journals, presentations at scientific meetings and to the lay public.

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Patient and Public Involvement (PPI) in preclinical research: A scoping review protocol

HRB Open Research ◽

10.12688/hrbopenres.13303.2 ◽

2021 ◽

Vol 4 ◽

pp. 61

Author(s):

Pádraig Carroll ◽

Adrian Dervan ◽

Anthony Maher ◽

Ciarán McCarthy ◽

Ian Woods ◽

...

Keyword(s):

Scoping Review ◽

Public Involvement ◽

Positive Impact ◽

Patient And Public Involvement ◽

The Body ◽

Current Evidence ◽

Future Research ◽

Advisory Panel ◽

Preclinical Research ◽

Scoping Reviews

Introduction: Patient and public involvement (PPI) aims to improve the quality, relevance, and appropriateness of research and ensure that it meets the needs and expectations of those affected by particular conditions to the greatest possible degree. The evidence base for the positive impact of PPI on clinical research continues to grow, but the role of PPI in preclinical research (an umbrella term encompassing ‘basic’, ‘fundamental’, ‘translational’ or ‘lab-based’ research) remains limited. As funding bodies and policymakers continue to increase emphasis on the relevance of PPI to preclinical research, it is timely to map the PPI literature to support preclinical researchers involving the public, patients, or other service users in their research. Therefore, the aim of this scoping review is to explore the literature on patient and public involvement in preclinical research from any discipline. Methods: This scoping review will search the literature in Medline (PubMed), Embase, CINAHL, PsycINFO, Web of Science Core Collection, Scopus, and OpenGrey.net to explore the application of PPI in preclinical research. This review will follow the Joanna Briggs Institute (JBI) guidelines for scoping reviews. It will be reported according to the Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR). Two reviewers will independently review articles for inclusion in the final review. Data extraction will be guided by the research questions. The PPI advisory panel will then collaboratively identify themes in the extracted data. Discussion: This scoping review will provide a map of current evidence surrounding preclinical PPI, and identify the body of literature on this topic, which has not been comprehensively reviewed to date. Findings will inform ongoing work of the research team, support the work of other preclinical researchers aiming to include PPI in their own research, and identify knowledge and practice gaps. Areas for future research will be identified.

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The Academic Viewpoint on Patient Data Ownership in the Context of Big Data: Scoping Review

Journal of Medical Internet Research ◽

10.2196/22214 ◽

2020 ◽

Vol 22 (8) ◽

pp. e22214

Author(s):

Martin Mirchev ◽

Iskra Mircheva ◽

Albena Kerekovska

Keyword(s):

Big Data ◽

Medical Research ◽

Information And Communication Technologies ◽

Patient Information ◽

Scoping Review ◽

Patient Data ◽

Academic Community ◽

The Body ◽

Scoping Reviews ◽

Data Ownership

Background The ownership of patient information in the context of big data is a relatively new problem, which is not yet fully recognized by the medical academic community. The problem is interdisciplinary, incorporating legal, ethical, medical, and aspects of information and communication technologies, requiring a sophisticated analysis. However, no previous scoping review has mapped existing studies on the subject. Objective This study aims to map and assess published studies on patient data ownership in the context of big data as viewed by the academic community. Methods A scoping review was conducted based on the 5-stage framework outlined by Arksey and O’Malley and further developed by Levac, Colquhoun, and O’Brien. The organization and reporting of results of the scoping review were conducted according to PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses and its extensions for Scoping Reviews). A systematic and comprehensive search of 4 scientific information databases, PubMed, ScienceDirect, Scopus, and Springer, was performed for studies published between January 2000 and October 2019. Two authors independently assessed the eligibility of the studies and the extracted data. Results The review included 32 eligible articles authored by academicians that correspond to 3 focus areas: problem (ownership), area (health care), and context (big data). Five major aspects were studied: the scientific area of publications, aspects and academicians’ perception of ownership in the context of big data, proposed solutions, and practical applications for data ownership issues in the context of big data. The aspects in which publications consider ownership of medical data are not clearly distinguished but can be summarized as ethical, legal, political, and managerial. The ownership of patient data is perceived primarily as a challenge fundamental to conducting medical research, including data sales and sharing, and to a lesser degree as a means of control, problem, threat, and opportunity also in view of medical research. Although numerous solutions falling into 3 categories, technology, law, and policy, were proposed, only 3 real applications were discussed. Conclusions The issue of ownership of patient information in the context of big data is poorly researched; it is not addressed consistently and in its integrity, and there is no consensus on policy decisions and the necessary legal regulations. Future research should investigate the issue of ownership as a core research question and not as a minor fragment among other topics. More research is needed to increase the body of knowledge regarding the development of adequate policies and relevant legal frameworks in compliance with ethical standards. The combined efforts of multidisciplinary academic teams are needed to overcome existing gaps in the perception of ownership, the aspects of ownership, and the possible solutions to patient data ownership issues in the reality of big data.

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Menstrual experience of adolescents in the USA: protocol for a scoping review

BMJ Open ◽

10.1136/bmjopen-2020-040511 ◽

2021 ◽

Vol 11 (2) ◽

pp. e040511

Author(s):

Ronke Olowojesiku ◽

Deborah J Shim ◽

Bryanna Moppins ◽

Daye Park ◽

Jasmine O Patterson ◽

...

Keyword(s):

Social Services ◽

Scoping Review ◽

Low Income ◽

Research Team ◽

Grey Literature ◽

The Body ◽

Primary Study ◽

Scoping Reviews ◽

The Usa ◽

The Impact

IntroductionIn recent years, there has been a growing desire to address issues related to menstruation, particularly for adolescent girls. In low-income and middle-income countries, prior literature review of the adolescent menstrual experience suggests the need for further research into the impact and efficacy of interventions with this population. There is evidence to suggest the need for initiatives and research in higher-income countries like the USA. To date, the body of research on adolescent menstrual experience in the USA remains uncharacterised. Therefore, we propose a scoping review of the literature on this subject to better inform on areas for future primary study.Methods and analysesUsing the framework proposed by Arksey and O’Malley and expounded on by Levac et al and the Joanna Briggs Institute, we will search electronic databases (MEDLINE, CINAHL, PsycINFO, Web of Science, ProQuest Public Health Database, Social Science Citation Index, Social Services Abstracts and SocINDEX) and grey literature for relevant studies in consultation with experienced librarians. The abstracts and full-text from each reference will be screened by two independent reviewers for inclusion. Bibliographic data, study characteristics and themes will be extracted from studies selected for inclusion using a rubric created by the research team. Findings will be summarised and a list of subject areas for future primary research will be generated in consultation with stakeholders. The review will be conducted using the Preferred Reporting Items from Systematic Reviews and Meta-Analyses extension for Scoping Reviews guidelines.Ethics and disseminationFormal ethics training for this study is not required, as the research team will review publicly available studies. Stakeholders working in adolescent and menstrual health were consulted in designing this review. We will share key findings with stakeholders and in scholarly journals at the conclusion of the review.

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The Role of Acceptance and Commitment Therapy in Cardiovascular and Diabetes Healthcare: A Scoping Review

International Journal of Environmental Research and Public Health ◽

10.3390/ijerph18158126 ◽

2021 ◽

Vol 18 (15) ◽

pp. 8126

Author(s):

Amineh Rashidi ◽

Lisa Whitehead ◽

Lisa Newson ◽

Felicity Astin ◽

Paramjit Gill ◽

...

Keyword(s):

Acceptance And Commitment Therapy ◽

Scoping Review ◽

Behavioural Therapy ◽

Post Intervention ◽

Commitment Therapy ◽

Acceptance And Commitment ◽

Cognitive Behavioural ◽

Scoping Reviews ◽

Patient Reported ◽

Randomised Controlled

Acceptance and commitment therapy (ACT) is an adapted form of cognitive behavioural therapy. ACT focuses on how thinking affects behaviour and promotes psychological flexibility. The prevalence of psychological distress among people living with cardiovascular disease (CVD) and/or type 2 diabetes mellitus (T2DM) is high, and ACT may offer an alternative treatment approach. This scoping review explored the use of ACT as an intervention to support adults living with CVD and/or T2DM. A systematic search of the literature resulted in the inclusion of 15 studies. Studies were reviewed using the Joanna Briggs Institute approach to conducting scoping reviews. Most studies (n = 13) related to people living with T2DM, and most (n = 10) used a pre-post design, four studies were randomised controlled trials, and one was a qualitative study. Eight studies reported an improvement in the outcome(s) assessed post-intervention, suggesting that ACT was an acceptable and valid intervention to support people living with CVD or T2DM. However, studies were underpowered and only limited studies involved people living with CVD. ACT was assessed as a valuable approach to improve a range of patient-reported outcomes for those living with CVD or T2DM, and further research involving robust study designs and larger cohorts are warranted.

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Patient and Public Involvement (PPI) in preclinical research: A scoping review protocol

HRB Open Research ◽

10.12688/hrbopenres.13303.1 ◽

2021 ◽

Vol 4 ◽

pp. 61

Author(s):

Pádraig Carroll ◽

Adrian Dervan ◽

Anthony Maher ◽

Ciarán McCarthy ◽

Ian Woods ◽

...

Keyword(s):

Scoping Review ◽

Public Involvement ◽

Positive Impact ◽

Patient And Public Involvement ◽

The Body ◽

Current Evidence ◽

Future Research ◽

Advisory Panel ◽

Preclinical Research ◽

Scoping Reviews

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Electronic Medical Record–Based Case Phenotyping for the Charlson Conditions: Scoping Review (Preprint)

10.2196/preprints.23934 ◽

2020 ◽

Author(s):

Seungwon Lee ◽

Chelsea Doktorchik ◽

Elliot Asher Martin ◽

Adam Giles D'Souza ◽

Cathy Eastwood ◽

...

Keyword(s):

Health Systems ◽

Scoping Review ◽

Clinical Pathways ◽

Clinical Care ◽

Data Access ◽

The United States ◽

Case Definitions ◽

Services Research ◽

Algorithm Development ◽

Scoping Reviews

BACKGROUND Electronic medical records (EMRs) contain large amounts of rich clinical information. Developing EMR-based case definitions, also known as EMR phenotyping, is an active area of research that has implications for epidemiology, clinical care, and health services research. OBJECTIVE This review aims to describe and assess the present landscape of EMR-based case phenotyping for the Charlson conditions. METHODS A scoping review of EMR-based algorithms for defining the Charlson comorbidity index conditions was completed. This study covered articles published between January 2000 and April 2020, both inclusive. Embase (Excerpta Medica database) and MEDLINE (Medical Literature Analysis and Retrieval System Online) were searched using keywords developed in the following 3 domains: terms related to EMR, terms related to case finding, and disease-specific terms. The manuscript follows the Preferred Reporting Items for Systematic reviews and Meta-analyses extension for Scoping Reviews (PRISMA) guidelines. RESULTS A total of 274 articles representing 299 algorithms were assessed and summarized. Most studies were undertaken in the United States (181/299, 60.5%), followed by the United Kingdom (42/299, 14.0%) and Canada (15/299, 5.0%). These algorithms were mostly developed either in primary care (103/299, 34.4%) or inpatient (168/299, 56.2%) settings. Diabetes, congestive heart failure, myocardial infarction, and rheumatology had the highest number of developed algorithms. Data-driven and clinical rule–based approaches have been identified. EMR-based phenotype and algorithm development reflect the data access allowed by respective health systems, and algorithms vary in their performance. CONCLUSIONS Recognizing similarities and differences in health systems, data collection strategies, extraction, data release protocols, and existing clinical pathways is critical to algorithm development strategies. Several strategies to assist with phenotype-based case definitions have been proposed. CLINICALTRIAL

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