Evaluation Considerations for Secondary Uses of Clinical Data: Principles for an Evidence-based Approach to Policy and Implementation of Secondary Analysis

Scott, Philip; Rigby, Michael; Ammenwerth, Elske; McNair, Jytte Brender; Georgiou, Andrew; Hyppönen, Hannele; Keizer, Nicolette de; Magrabi, Farah; Nykänen, Pirkko; Gude, Wouter T.; Hackl, Werner O.

doi:10.15265/iy-2017-010

Cited by 14 publications

(12 citation statements)

References 38 publications

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“…PolicyWise's experience herein corroborates, however, extant literature that connects data quality, trust and good governance [55]. Good data governance entails monitoring and evaluation of data policies [57]. Data governance domains include data principles, data quality, metadata, data access, and data lifecycle parameters [58,59].…”

Section: Discussionsupporting

confidence: 64%

The Experience of Establishing Data Sharing & Linkage Platforms for Administrative, Research and Community-Service Data

Manhas

Cui²,

Tough

2019

IJPDS

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IntroductionInnovative data platforms (e.g. biobanks, repositories) continually emerge to facilitate data sharing. Extant and emerging data platforms must navigate myriad tensions for successful data sharing and re-use. Two Alberta data platforms navigated such processes and factors regarding administrative, research and nonprofit data: the Child & Youth Data Laboratory (CYDL) and Secondary Analysis to Generate Evidence (SAGE). ObjectivesTo clarify the social and policy factors that influenced CYDL and SAGE establishment and implementation, and the relationships, if any, between these factors and data type. MethodsThis paper involves a qualitative secondary analysis of two developmental evaluations on CYDL and SAGE establishment. Six-years post-implementation, the CYDL evaluation entailed document review; website user analysis; informant interviews (n=30); online stakeholder survey (n=260); and an environmental scan. One-year post implementation, the SAGE evaluation included 15 interviews and document review. We used thematic analysis and comparisons with the literature to identify key factors. ResultsThree (not mutually exclusive) categories of social and policy factors influenced the navigation towards CYDL and SAGE realization: trusting relationships; sustainability amidst readiness; and privacy within social context. For these platforms to be able to manage, link or share data, trust had to be fostered and maintained across multiple, dynamic and intersecting relationships between primary data producers, data subjects, secondary users and institutions. Platform sustainability and readiness required capacity building and innovation. Privacy and information sharing evolved culturally and correspondingly for these data platforms, which required constant flexibility and awareness. ConclusionsThis commentary calls for more empirical research on the value of data re-use or the detriment in not re-using data. While the culture of information sharing is progressing towards greater openness and capacity for data sharing and re-use, successful data platforms must advocate, facilitate and mobilize analysis and innovation using data re-use while being cognizant of social and policy influences.

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Section: Discussionsupporting

confidence: 64%

The Experience of Establishing Data Sharing & Linkage Platforms for Administrative, Research and Community-Service Data

Manhas

Cui²,

Tough

2019

IJPDS

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“…This contributes to expanding our knowledge about how action planning in A&F interventions can be facilitated [7]. The electronic nature of our A&F intervention enabled us to study mechanisms in detail and unobtrusively, whilst including all participants [34, 35]. Usage data that are a by-product of using digital A&F interventions in real-world settings is largely underutilised; they also informed the telephone interviews.…”

Section: Discussionmentioning

confidence: 99%

Facilitating action planning within audit and feedback interventions: a mixed-methods process evaluation of an action implementation toolbox in intensive care

et al. 2019

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Background Audit and feedback (A&F) is more effective if it facilitates action planning, but little is known about how best to do this. We developed an electronic A&F intervention with an action implementation toolbox to improve pain management in intensive care units (ICUs); the toolbox contained suggested actions for improvement. A head-to-head randomised trial demonstrated that the toolbox moderately increased the intervention’s effectiveness when compared with A&F only. Objective To understand the mechanisms through which A&F with action implementation toolbox facilitates action planning by ICUs to increase A&F effectiveness. Methods We extracted all individual actions from action plans developed by ICUs that received A&F with (n = 10) and without (n = 11) toolbox for 6 months and classified them using Clinical Performance Feedback Intervention Theory. We held semi-structured interviews with participants during the trial. We compared the number and type of planned and completed actions between study groups and explored barriers and facilitators to effective action planning. Results ICUs with toolbox planned more actions directly aimed at improving practice (p = 0.037) and targeted a wider range of practice determinants compared to ICUs without toolbox. ICUs with toolbox also completed more actions during the study period, but not significantly (p = 0.142). ICUs without toolbox reported more difficulties in identifying what actions they could take. Regardless of the toolbox, all ICUs still experienced barriers relating to the feedback (low controllability, accuracy) and organisational context (competing priorities, resources, cost). Conclusions The toolbox helped health professionals to broaden their mindset about actions they could take to change clinical practice. Without the toolbox, professionals tended to focus more on feedback verification and exploring solutions without developing intentions for actual change. All feedback recipients experienced organisational barriers that inhibited eventual completion of actions. Trial registration ClinicalTrials.gov, NCT02922101. Registered on 26 September 2016.

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“…The most important reported benefits included improved communication with physicians and the management of the patient condition 76 , 81–83 . There were no findings that directly reported on issues of privacy and security even though the literature often cites these as key sources of concern 92 . In situations involving life-threatening illnesses, cancer diagnoses, and incurable conditions, the evidence highlighted the preference for face-to-face consultations and the initial involvement of the responsible physician 75 , 93 .…”

Section: Discussionmentioning

confidence: 99%

The impact of health information technology on the management and follow-up of test results – a systematic review

Georgiou

Thomas

et al. 2019

Journal of the American Medical Informatics Association

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Objective To investigate the impact of health information technology (IT) systems on clinicians’ work practices and patient engagement in the management and follow-up of test results. Materials and Methods A search for studies reporting health IT systems and clinician test results management was conducted in the following databases: MEDLINE, EMBASE, CINAHL, Web of Science, ScienceDirect, ProQuest, and Scopus from January 1999 to June 2018. Test results follow-up was defined as provider follow-up of results for tests that were sent to the laboratory and radiology services for processing or analysis. Results There are some findings from controlled studies showing that health IT can improve the proportion of tests followed-up (15 percentage point change) and increase physician awareness of test results that require action (24–28 percentage point change). Taken as whole, however, the evidence of the impact of health IT on test result management and follow-up is not strong. Discussion The development of safe and effective test results management IT systems should pivot on several axes. These axes include 1) patient-centerd engagement (involving shared, timely, and meaningful information); 2) diagnostic processes (that involve the integration of multiple people and different clinical settings across the health care spectrum); and 3) organizational communications (the myriad of multi- transactional processes requiring feedback, iteration, and confirmation) that contribute to the patient care process. Conclusion Existing evidence indicates that health IT in and of itself does not (and most likely cannot) provide a complete solution to issues related to test results management and follow-up.

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Evaluation Considerations for Secondary Uses of Clinical Data: Principles for an Evidence-based Approach to Policy and Implementation of Secondary Analysis

Cited by 14 publications

References 38 publications

The Experience of Establishing Data Sharing & Linkage Platforms for Administrative, Research and Community-Service Data

The Experience of Establishing Data Sharing & Linkage Platforms for Administrative, Research and Community-Service Data

Facilitating action planning within audit and feedback interventions: a mixed-methods process evaluation of an action implementation toolbox in intensive care

The impact of health information technology on the management and follow-up of test results – a systematic review

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