Exploring the Pathways of Diabetes Foot Complications Treatment and Investigating Experiences From Frontline Health Care Professionals: Protocol for a Mixed Methods Study.

BACKGROUND: Diabetes affects more than 4.3 million individuals in the United Kingdom, with 19% to 34% developing diabetes-related foot ulceration (DFU) during their lifespan, which can lead to an amputation. In the United Kingdom, every week, approximately 169 people have an amputation due to diabetes. Preventing first-ever ulcers is the most effective strategy to reduce the occurrence of diabetes-related amputations, but research in this space is lacking. OBJECTIVE: This protocol seeks to document the experiences and perspectives of frontline health care professionals who work with people who have diabetes and diabetes-related foot problems. Special attention is given to their perceptions of barriers to effective care, their views about barriers to effective and inclusive engagement with people with diabetes, and their experience with the first-ever DFU. Another aspect of the study is the focus on whether clinical management is affected by data sharing, data availability, and interoperability issues. METHODS: This is a mixed methods explanatory protocol, which is sequential, and its purpose is to use the qualitative data to explain the initial quantitative data collected through a survey of frontline health care professionals. Data analysis of quantitative data will be completed first and then synthesized with the qualitative data analysis. Qualitative data will be analyzed using the framework method. This study will use joint displays to integrate the data. Ethical approval has been granted by the ethics committee of Staffordshire University. RESULTS: The quantitative data collection started in March 2023 and will close in May 2024. The qualitative interviews commenced in November 2023 with volunteer participants who initially completed the survey. CONCLUSIONS: This study's survey focuses on data interoperability and the interviews focus more on the perspectives and experiences of clinicians and their perceived barriers for the effective management of diabetes foot ulcers. Including a geographically relevant and diverse cohort of health care professionals that spans a wide range of roles and care settings involved in diabetes-related foot care is very important for the successful application of this protocol. Special care is given to advertise and promote participation as widely as possible. The qualitative part of this protocol is also limited to 30-40 interview participants, as it is not realistic to interview higher numbers, due to time and resource constraints. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/54852.

Modelling clinical narrative as computable knowledge: The NICE computable implementation guidance project.

Introduction: Translating narrative clinical guidelines to computable knowledge is a long-standing challenge that has seen a diverse range of approaches. The UK National Institute for Health and Care Excellence (NICE) Content Advisory Board (CAB) aims ultimately to (1) guide clinical decision support and other software developers to increase traceability, fidelity and consistency in supporting clinical use of NICE recommendations, (2) guide local practice audit and intervention to reduce unwarranted variation, (3) provide feedback to NICE on how future recommendations should be developed. Objectives: The first phase of work was to explore a range of technical approaches to transition NICE toward the production of natively digital content. Methods: Following an initial 'collaborathon' in November 2022, the NICE Computable Implementation Guidance project (NCIG) was established. We held a series of workstream calls approximately fortnightly, focusing on (1) user stories and trigger events, (2) information model and definitions, (3) horizon-scanning and output format. A second collaborathon was held in March 2023 to consolidate progress across the workstreams and agree residual actions to complete. Results: While we initially focussed on technical implementation standards, we decided that an intermediate logical model was a more achievable first step in the journey from narrative to fully computable representation. NCIG adopted the WHO Digital Adaptation Kit (DAK) as a technology-agnostic method to model user scenarios, personae, processes and workflow, core data elements and decision-support logic. Further work will address indicators, such as prescribing compliance, and implementation in document templates for primary care patient record systems. Conclusions: The project has shown that the WHO DAK, with some modification, is a promising approach to build technology-neutral logical specifications of NICE recommendations. Implementation of concurrent computable modelling by multidisciplinary teams during guideline development poses methodological and cultural questions that are complex but tractable given suitable will and leadership.

One Health in a Digital World: Technology, Data, Information and Knowledge.

OBJECTIVES: To describe the origins and growth of the One Health concept and its recent application in One Digital Health. METHODS: Bibliometric review and critical discussion of emergent themes derived from co-occurrence of MeSH keywords. RESULTS: The fundamental interrelationship between human health, animal health and the wider environment has been recognized since ancient times. One Health as a distinct term originated in 2004 and has been a rapidly growing concept of interest in the biomedical literature since 2017. One Digital Health has quickly established itself as a unifying construct that highlights the critical role of technology, data, information and knowledge to facilitate the interdisciplinary collaboration that One Health requires. The principal application domains of One Digital Health to date are in FAIR data integration and analysis, disease surveillance, antimicrobial stewardship and environmental monitoring. CONCLUSIONS: One Health and One Digital Health offer powerful lenses to examine and address crises in our living world. We propose thinking in terms of Learning One Health Systems that can dynamically capture, integrate, analyse and monitor application of data across the biosphere.

Interdisciplinary Teams in Health Informatics: Using FHIR Standards to Share Computable Knowledge.

The use and shareability of Clinical Quality Language (CQL) artefacts is an important aspect in enabling the exchange and interoperability of clinical data to support both clinical decisions and research in the medical informatics field. This paper, while basing on use cases and synthetic data, developed purposeful CQL reusable libraries to showcase the possibilities of multidisciplinary teams and how CQLs could be best used to support clinical decision making.

Experiences of Creating Computable Knowledge Tutorials Using HL7 Clinical Quality Language.

Computable knowledge artefact development is challenging and often culminates in the development of unique single usage solutions. Libraries of computable knowledge artefacts have the possibility to enhance the Learning Health System in order to improve the benefits of innovation and the decision making of clinicians. This paper aims to discuss the process of creating the use cases and the tutorial material that would enable students to both understand how the interaction between the dataset and the outcome occurs as well as how HL7 Clinical Quality Language can be used to create artefacts of re-usable code.

Personal Health Records an Approach to Answer: What Works for Whom in What Circumstances?

National Health Service (NHS) policy suggests that increasing usage of electronic personal health records (PHR) by patients will result in cost savings and improved public health, especially for people with long-term conditions. PHR design features are inevitably important, since a good PHR design should make the users achieve their health goals effortlessly, which is understandable and usable. Three original theoretical models were developed using realist evaluation, one per long-term condition cohort, describing the interaction between the PHR design features and the patient and disease specific factors, to help determine what works for whom in what circumstances.

Mixed methods protocol for a realist evaluation of electronic personal health records design features and use to support medication adherence (ePHRma).

BACKGROUND: National Health Service policy suggests that increasing usage of electronic personal health records (PHR) by patients will result in cost savings and improved public health. Medication adherence means that patients take their prescribed medication as agreed with their doctors. Some of the claimed benefits of PHRs are decreasing healthcare costs and improving medication adherence and patient outcomes. METHODS: This is a mixed methods convergent study, primarily qualitative. The qualitative and quantitative data collection and analysis will occur in parallel, and then be synthesised. We are interviewing and surveying adults with long-term conditions to identify what are the most important and useful features of their current PHR. The data collection comprises patient demographics, the Medication Adherence Questionnaire, the personality scale Big Five Inventory-2 Extra-Short Form and the WHO Quality of Life-BREF scale. Qualitative data will be analysed using the Framework method. ETHICS: We have received a favourable ethical opinion from the Health Research Authority/Research Ethics Committee.

What are the important design features of personal health records to improve medication adherence for patients with long-term conditions? A systematic literature review.

OBJECTIVES: This systematic literature review aims to identify important design features of the electronic personal health record (PHR) that may improve medication adherence in the adult population with long-term conditions. DATA SOURCES: PubMed (including MEDLINE), CINAHL, Science Direct (including EMBASE), BioMed Central, ACM digital, Emerald Insight, Google Scholar and Research Gate. METHODS: Studies that were published between 1 January 2002 and 31 May 2018 in English were included if the participants were adults, with at least one long-term condition, were able to self-administer their medication and were treated in primary care settings. The quality of evidence was assessed with the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) system and the risk of bias was appraised using the Cochrane risk of bias tool. RESULTS: From a total of 27 studies that matched the inclusion criteria, 12 were excluded due to low quality of evidence, 10 were rated moderate and 5 were rated high quality. All the included studies had low sample size and limited follow-up duration. Thirteen of the included studies found that the use of a PHR has increased medication adherence. The identified design features are reminders, education, personalisation and tailoring, feedback and alerts, gamification, medication management, medical appointment management, diary and self-monitoring, health condition management, set goals, patient's blog and tethered. It was impossible to draw conclusions as to which feature is important to what group of patients and why. The most frequently identified conditions were HIV and diabetes. This review did not identify any papers with negative results. It was not possible to numerically aggregate the PHR effect due to high heterogeneity of the medication adherence measurement, study type, participants and PHRs used. CONCLUSION: Although we found recurrent evidence that PHRs can improve medication adherence, there is little evidence to date to indicate which design features facilitate this process. PROSPERO REGISTRATION NUMBER: CRD42017060542.

Important Design Features of Personal Health Records to Improve Medication Adherence for Patients with Long-Term Conditions: Protocol for a Systematic Literature Review.

BACKGROUND: The National Health Service (NHS) England spent £15.5 billion on medication in 2015. More than a third of patients affected by at least one long-term condition do not adhere to their drug regime. Many interventions have been trialed to improve medication adherence. One promising innovation is the electronic personal health record. OBJECTIVE: This systematic literature review aims to identify the important design features of personal health records to improve medication adherence for patients with long-term conditions. METHODS: This protocol follows the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocol (PRISMA-P 2015) statement. The following databases will be searched for relevant articles: PubMed, Science Direct, BioMed Central, Cumulative Index to Nursing and Allied Health Literature, Cochrane Database of Systematic Reviews, and the Cochrane Central Register of Controlled Trials. Studies published in the last fifteen years, in English, will be included if the participants are adults who were treated outside the hospital, have the ability to self-administer their medication, and have at least one long-term condition. The review will exclude commercial or political sources and papers without references. Papers that research pediatrics, pregnant, or terminally ill patients will also be excluded, since their medication management is typically more complex. RESULTS: One reviewer will screen the included studies, extract the relevant data, and assess the quality of evidence utilizing the Grading of Recommendations Assessment, Development, and Evaluation system and the risk of bias using the Cochrane RevMan tool. The second reviewer will assess the quality of 25% of the included studies to assess interrater agreement. Any disagreement will be solved by a third reviewer. Only studies of high and moderate quality will be included for narrative synthesis. CONCLUSIONS: NHS policy assumes that increasing usage of personal health records by citizens will reduce demand on health care services. There is limited evidence, however, that the use of health apps can improve patient outcomes, and, to our knowledge, this is the first systematic literature review aiming to identify important design features of the personal health record which may improve medication adherence in the adult population with long-term conditions. TRIAL REGISTRATION: PROSPERO CRD42017060542; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=60542 (Archived by WebCite at http://www.webcitation.org/6zeuWXxVh). REGISTERED REPORT IDENTIFIER: RR1-10.2196/9778.