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      How patient-generated health data and patient-reported outcomes affect patient–clinician relationships: A systematic review

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          Abstract

          Introduction:

          Many patients use mobile devices to track health conditions by recording patient-generated health data. However, patients and clinicians may disagree how to use these data.

          Objective:

          To systematically review the literature to identify how patient-generated health data and patient-reported outcomes collected outside of clinical settings can affect patient–clinician relationships within surgery and primary care.

          Methods:

          Six research databases were queried for publications documenting the effect of patient-generated health data or patient-reported outcomes on patient–clinician relationships. We conducted thematic synthesis of the results of the included publications.

          Results:

          Thirteen of the 3204 identified publications were included for synthesis. Three main themes were identified: patient-generated health data supported patient–clinician communication and health awareness, patients desired for their clinicians to be involved with their patient-generated health data, which clinicians had difficulty accommodating, and patient-generated health data platform features may support or hinder patient–clinician collaboration.

          Conclusion:

          Patient-generated health data and patient-reported outcomes may improve patient health awareness and communication with clinicians but may negatively affect patient–clinician relationships.

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          Most cited references73

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          Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement.

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            Methods for the thematic synthesis of qualitative research in systematic reviews

            Background There is a growing recognition of the value of synthesising qualitative research in the evidence base in order to facilitate effective and appropriate health care. In response to this, methods for undertaking these syntheses are currently being developed. Thematic analysis is a method that is often used to analyse data in primary qualitative research. This paper reports on the use of this type of analysis in systematic reviews to bring together and integrate the findings of multiple qualitative studies. Methods We describe thematic synthesis, outline several steps for its conduct and illustrate the process and outcome of this approach using a completed review of health promotion research. Thematic synthesis has three stages: the coding of text 'line-by-line'; the development of 'descriptive themes'; and the generation of 'analytical themes'. While the development of descriptive themes remains 'close' to the primary studies, the analytical themes represent a stage of interpretation whereby the reviewers 'go beyond' the primary studies and generate new interpretive constructs, explanations or hypotheses. The use of computer software can facilitate this method of synthesis; detailed guidance is given on how this can be achieved. Results We used thematic synthesis to combine the studies of children's views and identified key themes to explore in the intervention studies. Most interventions were based in school and often combined learning about health benefits with 'hands-on' experience. The studies of children's views suggested that fruit and vegetables should be treated in different ways, and that messages should not focus on health warnings. Interventions that were in line with these suggestions tended to be more effective. Thematic synthesis enabled us to stay 'close' to the results of the primary studies, synthesising them in a transparent way, and facilitating the explicit production of new concepts and hypotheses. Conclusion We compare thematic synthesis to other methods for the synthesis of qualitative research, discussing issues of context and rigour. Thematic synthesis is presented as a tried and tested method that preserves an explicit and transparent link between conclusions and the text of primary studies; as such it preserves principles that have traditionally been important to systematic reviewing.
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              The measurement of observer agreement for categorical data.

              This paper presents a general statistical methodology for the analysis of multivariate categorical data arising from observer reliability studies. The procedure essentially involves the construction of functions of the observed proportions which are directed at the extent to which the observers agree among themselves and the construction of test statistics for hypotheses involving these functions. Tests for interobserver bias are presented in terms of first-order marginal homogeneity and measures of interobserver agreement are developed as generalized kappa-type statistics. These procedures are illustrated with a clinical diagnosis example from the epidemiological literature.

                Author and article information

                Contributors
                Journal
                100883604
                32729
                Health Informatics J
                Health Informatics J
                Health informatics journal
                1460-4582
                1741-2811
                25 March 2022
                December 2020
                20 June 2020
                06 April 2022
                : 26
                : 4
                : 2689-2706
                Affiliations
                University of Washington School of Medicine, USA
                University of Washington School of Medicine, USA
                University of Washington School of Medicine, USA; University of Washington–Bothell, USA
                Medical University of South Carolina, USA
                University of Washington College of Engineering, USA
                University of Washington School of Medicine, USA; University of Washington–Tacoma, USA
                University of Washington School of Medicine, USA; University of Washington, USA
                Author notes
                Corresponding author: Ross J Lordon, Department of Biomedical Informatics and Medical Education, University of Washington School of Medicine, Box 358047, Seattle, WA 98195, USA. rlordon@ 123456uw.edu
                Author information
                http://orcid.org/0000-0002-7387-1152
                http://orcid.org/0000-0002-7770-7827
                http://orcid.org/0000-0002-3661-0666
                Article
                NIHMS1693929
                10.1177/1460458220928184
                8986320
                32567460
                2c32b496-19d9-4732-911c-673dbec60350

                Creative Commons Non Commercial CC BY-NC: This article is distributed under the terms of the Creative Commons Attribution-NonCommercial 4.0 License ( https://creativecommons.org/licenses/by-nc/4.0/) which permits non-commercial use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

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                Categories
                Article

                patient-generated health data,patient reported outcomes,primary care,professional-patient relations [mesh],surgery

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