Leveraging a qualitative data repository to integrate patient and caregiver perspectives into clinical research

Christensen, Vivian; Parker, Kellee; Cottrell, Erika

doi:10.1017/cts.2021.822

Cited by 3 publications

(2 citation statements)

References 18 publications

(23 reference statements)

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“…The methodology has been further codified [20,21], as well as the use and impact of the data for researchers, healthcare professionals, patients, and caregivers [10,[22][23][24].…”

Section: Review Article: Biomedical Intelligencementioning

confidence: 99%

Patient narratives – a still undervalued resource for healthcare improvement

Spitale¹,

Glässel²,

Tyebally-Fang³

et al. 2023

Swiss Med Wkly

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In recent years, patient narratives have attracted increasing attention as a valuable source of insights into the subjective experience of healthcare. This paper outlines a best-practice approach to the collection, analysis, and use of patient narratives, based on current literature and on the experience of developing the Swiss Database of Individual Patient Experiences (DIPEx). The DIPEx project aims to provide a systematic and methodologically rigorous collection of patient narratives on various health situations and topics. This paper presents and details the DIPEx approach as a current standard in the field, offering a comprehensive overview and discussing the potential uses and benefits of patient narratives: improve healthcare practice, empower patients and caregivers, help structure better communication in healthcare, and contribute to medical teaching and learning.

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“…The methodology has been further codified [20,21], as well as the use and impact of the data for researchers, healthcare professionals, patients, and caregivers [10,[22][23][24].…”

Section: Review Article: Biomedical Intelligencementioning

confidence: 99%

Patient narratives – a still undervalued resource for healthcare improvement

Spitale¹,

Glässel²,

Tyebally-Fang³

et al. 2023

Swiss Med Wkly

View full text Add to dashboard Cite

show abstract

“…Hearing from patients/parents about their experiences may also increase clinician empathy. Quality improvement initiatives that utilise DIPEx methodology have shown promise in educational settings (Pandhi et al, 2020), clinical study design (Christensen et al, 2021) and patient engagement (Nugent et al, 2022).…”

Section: Rele Van Ce To Clini C Al Pr Ac Ti Cementioning

confidence: 99%

‘Never once was I thinking the c‐word’: Parent perspectives on the facilitators and barriers to getting a childhood cancer diagnosis

Christensen

Parker

Chan

et al. 2022

Journal of Clinical Nursing

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Aims and Objectives:To describe the facilitators and barriers of getting from 'something's not right' to a childhood cancer diagnosis from the perspective of parents living in the United States of America. Background:It is common for families to experience long trajectories from when they first notice symptoms to receiving a childhood cancer diagnosis. Understanding this trajectory within the social and cultural contexts of the United States healthcare system is the first step in developing strategies for reducing this timeframe and mitigating some of the psychosocial impact for parents in receiving a childhood cancer diagnosis. This study examines the interpretations and meanings parents attributed to their child's symptoms, their decisions regarding seeking medical care, interactions with healthcare providers and the time course of events.Design: An inductive qualitative inquiry. Methods:In-depth, semi-structured interviews with 55 participants representing 39 unique cases of childhood cancer were conducted. Data were analysed using an inductive thematic approach. COREQ guidelines were followed.Results: Participants described multiple barriers and facilitators in their path to receiving a childhood cancer diagnosis. Facilitators included noticing something 'wasn't right' and physician in agreement that symptoms were unusual; acute symptoms requiring action; advocating for a diagnosis; and obtaining a second opinion. Barriers included parents having to interpret symptoms in the context of daily life; physician dismissiveness even when symptoms persisted; and not feeling they could question their physician's assessment. Conclusion:Families experience multiple facilitators and barriers in their trajectory to receiving a childhood cancer diagnosis.

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Health Experiences Research as a Resource and Mechanism for Veteran Engagement in VA Healthcare Research and Care Delivery

et al. 2022

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Engaging patients in the research process helps to ensure researchers ask meaningful questions and generate useful evidence to inform healthcare decisions. In 2015, the Veterans Health Administration (VA) Health Services Research & Development (HSR&D) service convened a Veteran engagement workgroup, comprised of researchers, clinicians, and Veterans, to identify ways to integrate Veteran engagement into HSR&D. A subgroup was designated to explore the utility of health experiences research (research focused on enhancing understanding of people’s experiences with healthcare and illnesses) as a mechanism to complement and broaden traditional engagement mechanisms. The subgroup recommended the VA adopt the Database of Individual Patient Experiences (DIPEx) methodology for conducting and disseminating health experiences research (HER). In this paper, we describe (1) the key components of the DIPEx approach, (2) how these components complement and broaden current methods of Veteran engagement, (3) an update on VA activities using the DIPEx approach, and (4) a roadmap for future VA HER activities.

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Leveraging a qualitative data repository to integrate patient and caregiver perspectives into clinical research

Abstract: This version may be subject to change during the production process.

Cited by 3 publications

References 18 publications

Patient narratives – a still undervalued resource for healthcare improvement

Patient narratives – a still undervalued resource for healthcare improvement

‘Never once was I thinking the c‐word’: Parent perspectives on the facilitators and barriers to getting a childhood cancer diagnosis

Health Experiences Research as a Resource and Mechanism for Veteran Engagement in VA Healthcare Research and Care Delivery

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