Guidance, recommendations and examples of developing of patient-centered data systems: A scoping review protocol.

BackgroundData plays a significant role in modern healthcare. Large-scale data systems use healthcare data to improve the design, delivery and review of healthcare. However, these data systems often lack a patient-centered approach. Patient-centered approaches to healthcare improve outcomes. Integrating a patient-centered approach into a large-scale data systems have great promise. Examples such as learning health systems have resulted in many positive healthcare outcomes. However, ethical, legislative and cybersecurity concerns have been stated. Collating the learning and the subsequent insights from reports on patient-centered data systems will further their development in healthcare.ObjectivesA scoping review to identify and collate the guidance, recommendations and examples of good practice of patient-centered data systems from scientific and grey literature.Eligibility criteriaContemporary sources of information (published academic and grey literature) will be included where they make explicit reference to the design, oversight, operation or experience of a national and/or international data system or registry. Similarly, these sources must refer to the patient-centered focus of the national and/or international data system or registry. Where there is no explicit statement that patients were centered in the data system in question, sources are excluded. and/or are involved in the design and/or oversight and/or operation of system. Other reviews and sources not published in English are also excluded.Sources of evidenceA test set of research articles were selected to develop initial search terms, which was then refined into a concept grid. Specific searches will be performed in PubMed, Scopus, CINAHL and Google Scholar, as well as within grey literature. All sources will be collated and stored, prior to an initial screen of title and abstract.Charting MethodsFull text versions of all remaining sources of literature will be screened, with data extraction occurring according to a predefined data extraction framework. Reasons for inclusion and exclusion at each step will be documented, as will any methodological modifications and/or revisions. Data extracted from selected sources will be characterised and summarised in tabular form, with supplementary diagrammatic presentation. Details of the guidance, recommendations and examples of patient-centered data systems will be outlined, alongside a narrative summary description.