Patient focused registries can improve health, care, and science

Nelson, Eugene C.; Dixon‐Woods, Mary; Batalden, Paul B.; Homa, Karen; Citters, Aricca D. Van; Morgan, Tamara S.; Eftimovska, Elena; Fisher, Elliott S.; Øvretveit, John; Harrison, Wade N; Lind, Cristin; Lindblad, Staffan

doi:10.1136/bmj.i3319

Cited by 142 publications

(151 citation statements)

References 25 publications

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“…Understanding and addressing ineffective contraception services was raised by the survey participants as a priority for women living with HIV with a call for women to be at the centre of all decision-making regarding service provision which affects their lives (Narasimhan et al, 2016;Salamander Trust, 2014). Newer models of registry development adopt a patient-led approach and align data collection with patient priorities (Nelson et al, 2016). Women with HIV should ideally be included in the design, oversight and use of a future TOP registry.…”

Section: Discussionmentioning

confidence: 99%

Using GRADE as a framework to guide research on the sexual and reproductive health and rights (SRHR) of women living with HIV – methodological opportunities and challenges

Siegfried¹,

Narasimhan

Kennedy

et al. 2017

AIDS Care

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(2017) Using GRADE as a framework to guide research on the sexual and reproductive health and rights (SRHR) of women living with HIV -methodological opportunities and challenges, AIDS Care, 29:9, 1088-1093, DOI: 10.1080/09540121.2017 New recommendations covered abortion, Caesarean section, safe disclosure, and empowerment and self-efficacy interventions. Identification of key research gaps is part of the WHO guidelines development process, but consistent methods to do so are lacking. Our method aimed to ensure consistency and comprised the systematic application of a framework based on GRADE (Grading of Recommendations, Assessment, Development and Evaluation) to the process. The framework incorporates the strength and quality rating of recommendations and the priorities reported by women in the survey to inform research prioritisation. For each gap, we also articulated: (1) the most appropriate and robust study design to answer the question; (2) alternative pragmatic designs if the ideal design is not feasible; and (3) the methodological challenges facing researchers through identifying potential biases. We found 12 research gaps and identified five appropriate study designs to address the related questions: (1) Cross-sectional surveys; (2) Qualitative interview-driven studies; (3) Registries; (4) Randomised controlled trials; and (5) Medical record audit. Methodological challenges included selection, recruitment, misclassification, measurement and contextual biases, and confounding. In conclusion, a framework based on GRADE can provide a systematic approach to identifying research gaps from a WHO guideline. Incorporation of the priorities of women living with HIV into the framework systematically ensures that women living with HIV can shape future policy decisions affecting their lives. Implementation science and participatory research are appropriate over-arching approaches to enhance uptake of interventions and to ensure inclusion of women living with HIV at all stages of the research process.ARTICLE HISTORY

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Section: Discussionmentioning

confidence: 99%

Using GRADE as a framework to guide research on the sexual and reproductive health and rights (SRHR) of women living with HIV – methodological opportunities and challenges

Siegfried¹,

Narasimhan

Kennedy

et al. 2017

AIDS Care

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“…Information technology including registry systems has multiple benefits especially for chronic diseases (36,37).…”

Section: Discussionmentioning

confidence: 99%

Enabling informed policymaking for chronic kidney disease with a registry: Initiatory steps in Iran and the path forward

Niazkhani

Cheshmekaboodi

Pirnejad

et al. 2018

Health Policy and Technology

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Enabling informed policymaking for chronic kidney disease with a registry: initiatory steps in Iran and the path forward, Health Policy and Technology, https://doi.org/10. 1016/j.hlpt.2018.01.004 This is a PDF file of an unedited manuscript that has been accepted for publication. As a service to our customers we are providing this early version of the manuscript. The manuscript will undergo copyediting, typesetting, and review of the resulting galley proof before it is published in its final citable form. Please note that during the production process errors may be discovered which could affect the content, and all legal disclaimers that apply to the journal pertain. Chronic kidney disease (CKD) registries have been used for more than half a century. Iran lacks a comprehensive registry to capture data of all CKD patients for an informed care planning and policy making. We aimed to identify the objectives and possible challenges for developing a CKD registry and also to define its minimum data set (MDS)in our healthcare context. MethodsThis was a mixed-method study conducted in Iran from fall 2016 till summer 2017. The qualitative part included document analysis and 26 semi-structured interviews with 17 clinicians and managers involved in CKD care. This data was analyzed using the "grounded theory". Then, a modified Delphi survey was conducted. Percentages and mode values were used for analysis. ResultsOur participants' leading interest in a CKD registry was centered on providing a coordinated, qualitative care for all CKD stages with particular emphasis to capture events and monitor trends for patients in earlier stages. They highlighted the required financial, technical and human resources as main challenges for a smooth registry implementation. Furthermore, a clinically oriented MDS comprising of 168 elements (with a majority having more than 90% agreement with mode 2) was extracted. It mainly collects demographics, medical history, encounter sessions, diagnostic examinations, medications, vaccinations and mortality data. Conclusions 3We reported the initiatory steps taken to establish a CKD registry in an Iranian healthcare context. We focused on the information needs and priorities of our main stakeholders and based our intended registry on addressing those needs. We hope this approach will facilitate its endorsement and advance the efforts for a sustainable, qualitative CKD care.

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“…Public reporting, clinical observations and research findings contribute to patient registries, creating a ‘shared information environment’ 2. A collaborative muscle injury registry compiling individual patient data would facilitate in-depth analysis of large sample sizes, enabling recommendations to be made about specific subcohorts to inform patient-centred care.…”

Section: Sharing Is Caring…and a Patient Registry Can Be The Most Robmentioning

confidence: 99%

The Big Five: consensus considerations before a muscle injury registry revolution - stating the (not so) obvious

Büttner

Delahunt²,

Roe

2018

Br J Sports Med

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Patient focused registries can improve health, care, and science

Abstract: Eugene Nelson and colleagues call for registries of care data to be transformed into patient centred interactive learning systems

Cited by 142 publications

References 25 publications

Using GRADE as a framework to guide research on the sexual and reproductive health and rights (SRHR) of women living with HIV – methodological opportunities and challenges

Using GRADE as a framework to guide research on the sexual and reproductive health and rights (SRHR) of women living with HIV – methodological opportunities and challenges

Enabling informed policymaking for chronic kidney disease with a registry: Initiatory steps in Iran and the path forward

The Big Five: consensus considerations before a muscle injury registry revolution - stating the (not so) obvious

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