Using feedback tools to enhance the quality and experience of care

Boehnke, Jan R.; Rutherford, Claudia

doi:10.1007/s11136-021-03008-8

Cited by 5 publications

(3 citation statements)

References 66 publications

(79 reference statements)

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“…These questions are particularly pressing when collecting PRO data in pediatric research due to children's limited ability to protect and promote their own interests. Commentators have pointed to a need for guidance regarding PRO reporting and response during research [17,18] and analysis of ethical questions concerning PROs [19].…”

Section: Introductionmentioning

confidence: 99%

Ethical and practical considerations related to data sharing when collecting patient-reported outcomes in care-based child health research

Vanderhout

Potter

Smith³

et al. 2023

Qual Life Res

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Purpose The collection and use of patient reported outcomes (PROs) in care-based child health research raises challenging ethical and logistical questions. This paper offers an analysis of two questions related to PROs in child health research: (1) Is it ethically obligatory, desirable or preferable to share PRO data collected for research with children, families, and health care providers? And if so, (2) What are the characteristics of a model best suited to guide the collection, monitoring, and sharing of these data? Methods A multidisciplinary team of researchers, providers, patient and family partners, and ethicists examined the literature and identified a need for focus on PRO sharing in pediatric care-based research. We constructed and analyzed three models for managing pediatric PRO data in care-based research, drawing on ethical principles, logistics, and opportunities to engage with children and families. Results We argue that it is preferable to share pediatric PRO data with providers, but to manage expectations and balance the risks and benefits of research, this requires a justifiable data sharing model. We argue that a successful PRO data sharing model will allow children and families to have access to and control over their own PRO data and be engaged in decision-making around how PROs collected for research may be integrated into care, but require support from providers. Conclusion We propose a PRO data sharing model that can be used across diverse research settings and contributes to improved transparency, communication, and patient-centered care and research.

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Section: Introductionmentioning

confidence: 99%

Ethical and practical considerations related to data sharing when collecting patient-reported outcomes in care-based child health research

Vanderhout

Potter

Smith³

et al. 2023

Qual Life Res

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“…This information can be used to inform clinical decision-making, improve patient outcomes, and drive research advancements and even more with the rise of artificial intelligence [ 10 , 11 ]. Furthermore, data can also be used to monitor and evaluate the performance of cancer centers, which is essential for quality improvement initiatives and accreditation [ 12 , 13 ]. It is therefore essential for such hospital structures to define a strategy for collecting and analyzing data, as well as sharing health data in compliance with the regulatory constraints in force.…”

Section: Introductionmentioning

confidence: 99%

From data strategy to implementation to advance cancer research and cancer care: A French comprehensive cancer center experience

Heudel,

Crochet,

Durand

et al. 2023

PLOS Digit Health

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In a comprehensive cancer center, effective data strategies are essential to evaluate practices, and outcome, understanding the disease and prognostic factors, identifying disparities in cancer care, and overall developing better treatments. To achieve these goals, the Center Léon Bérard (CLB) considers various data collection strategies, including electronic medical records (EMRs), clinical trial data, and research projects. Advanced data analysis techniques like natural language processing (NLP) can be used to extract and categorize information from these sources to provide a more complete description of patient data. Data sharing is also crucial for collaboration across comprehensive cancer centers, but it must be done securely and in compliance with regulations like GDPR. To ensure data is shared appropriately, CLB should develop clear data sharing policies and share data in a controlled, standardized format like OSIRIS RWD, OMOP and FHIR. The UNICANCER initiative has launched the CONSORE project to support the development of a structured and standardized repository of patient data to improve cancer research and patient outcomes. Real-world data (RWD) studies are vital in cancer research as they provide a comprehensive and accurate picture of patient outcomes and treatment patterns. By incorporating RWD into data collection, analysis, and sharing strategies, comprehensive cancer centers can take a more comprehensive and patient-centered approach to cancer research. In conclusion, comprehensive cancer centers must take an integrated approach to data collection, analysis, and sharing to enhance their understanding of cancer and improve patient outcomes. Leveraging advanced data analytics techniques and developing effective data sharing policies can help cancer centers effectively harness the power of data to drive progress in cancer research.

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“…In clinical practice, measurement instruments are increasingly used to aid the initial evaluation of patients and to assess outcomes. Measurement‐based care has been called for repeatedly in numerous editorials and reviews (Boehnke & Rutherford, 2021; Fortney et al, 2017; Harding et al, 2011; Lambert, 2007; Lewis et al, 2019; Snyder et al, 2012). Paradoxically, the abundance of measurement instruments poses barriers to their use in clinical practice (Fried, 2017; Santor et al, 2006).…”

Section: Introduction Of the Problemmentioning

confidence: 99%

Common measures or common metrics? A plea to harmonize measurement results

Beurs

Boehnke

Fried

2022

Clin Psychology and Psychoth

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Objective: There is a great variety of measurement instruments to assess similar constructs in clinical research and practice. This complicates the interpretation of test results and hampers the implementation of measurement-based care.Method: For reporting and discussing test results with patients, we suggest converting test results into universally applicable common metrics. Two well-established metrics are reviewed: T scores and percentile ranks. Their calculation is explained, their merits and drawbacks are discussed, and recommendations for the most convenient reference group are provided. Results:We propose to express test results as T scores with the general population as reference group. To elucidate test results to patients, T scores may be supplemented with percentile ranks, based on data from a clinical sample. The practical benefits are demonstrated using the published data of four frequently used instruments for measuring depression: the CES-D, PHQ-9, BDI-II and the PROMIS depression measure.Discussion: Recent initiatives have proposed to mandate a limited set of outcome measures to harmonize clinical measurement. However, the selected instruments are not without flaws and, potentially, this directive may hamper future instrument development. We recommend using common metrics as an alternative approach to harmonize test results in clinical practice, as this will facilitate the integration of measures in day-to-day practice.

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Using feedback tools to enhance the quality and experience of care

Cited by 5 publications

References 66 publications

Ethical and practical considerations related to data sharing when collecting patient-reported outcomes in care-based child health research

Ethical and practical considerations related to data sharing when collecting patient-reported outcomes in care-based child health research

From data strategy to implementation to advance cancer research and cancer care: A French comprehensive cancer center experience

Common measures or common metrics? A plea to harmonize measurement results

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