Patients Are Knowledge Workers in the Clinical Information Space

Papautsky, Elizabeth Lerner; Patterson, Emily S.

doi:10.1055/s-0041-1723022

Cited by 15 publications

(11 citation statements)

References 60 publications

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“…Defined as behavioral, cognitive, and emotional effort exerted by the patient in navigating not just their care, but their life, patient work is a construct that has been receiving attention in the last decade [ 21 ]. Examples include information seeking, navigating associated relationships and logistics of doing so, and managing emotions—all activities that are time consuming and effortful [ 22 ].…”

Section: Discussionmentioning

confidence: 99%

Characterizing experiences of non-medical switching to trastuzumab biosimilars using data from internet-based surveys with US-based oncologists and breast cancer patients

Papautsky

Carlson²,

Johnson³

et al. 2022

Breast Cancer Res Treat

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Purpose To characterize current experiences with communication and decision-making practices when non-medical switching to a biosimilar trastuzumab is proposed or required by cancer center or insurer. Methods We developed and launched 60- and 51-item internet surveys to elicit US breast cancer patient and medical oncologist lived experiences with trastuzumab biosimilars and patient information needs and seeking practices. We recruited participants using social media and administered via REDCap in 2020–2021. Results 143 breast cancer patients and 33 medical oncologists completed the surveys. 63.9% patients reported having switched to a trastuzumab biosimilar and 40.8% reported receiving no prior notification about switching. 44% of patients reported learning about biosimilars primarily through self-directed learning and 41% wanting more time to discuss with oncologist. None of the oncologists reported that the decision to switch a patient to a biosimilar was initiated by them, but rather more frequently by the insurer (45.2%). About 54.8% reported not receiving any pharmaceutical manufacturer material related to the selected biosimilar. Patients and oncologists diverged in their responses to items regarding patient opportunities to ask questions, adequacy of resources, effectiveness of treatment, patient worry, and magnitude of change. Conclusion There is a need for tailored and effective patient and oncologist information and education on trastuzumab biosimilars, along with improved healthcare communication regarding switching. The discrepancy between patient-reported experiences and oncologist perceptions of the patient experience, suggests a lack of adequate information that may be a challenge not only to the uptake of trastuzumab biosimilars, but to the patient-oncologist relationship.

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Section: Discussionmentioning

confidence: 99%

Characterizing experiences of non-medical switching to trastuzumab biosimilars using data from internet-based surveys with US-based oncologists and breast cancer patients

Papautsky

Carlson²,

Johnson³

et al. 2022

Breast Cancer Res Treat

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“…This suggests that participatory health technologies may indeed enable a shift toward a more collaborative and networked approach to participatory medicine beyond the patient-professional dyad. We have identified several features to support partnerships in chronic care management; however, the processes of how patient knowledge is shaped and integrated in shared decision-making are still poorly characterized [ 76 ]. Future research may reveal how knowledge from web-based health communities, patients, caregivers, and health care professionals can be effectively combined to support patients in their individual self-care and drive quality improvement and collective organizational learning.…”

Section: Discussionmentioning

confidence: 99%

Digital Health Technologies Enabling Partnerships in Chronic Care Management: Scoping Review

Wannheden¹,

Åberg-Wennerholm²,

Dahlberg³

et al. 2022

J Med Internet Res

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Background An increasing number of patients expect and want to play a greater role in their treatment and care decisions. This emphasizes the need to adopt collaborative health care practices, which implies collaboration among interprofessional health care teams and patients, their families, caregivers, and communities. In recent years, digital health technologies that support self-care and collaboration between the community and health care providers (ie, participatory health technologies) have received increasing attention. However, knowledge regarding the features of such technologies that support effective patient-professional partnerships is still limited. Objective This study aimed to map and assess published studies on participatory health technologies intended to support partnerships among patients, caregivers, and health care professionals in chronic care, focusing specifically on identifying the main features of these technologies. Methods A scoping review covering scientific publications in English between January 2008 and December 2020 was performed. We searched PubMed and Web of Science databases. Peer-reviewed qualitative, quantitative, and mixed methods studies that evaluated digital health technologies for patient-professional partnerships in chronic care settings were included. The data were charted and analyzed thematically. The PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews) checklist was used. Results This review included 32 studies, reported in 34 papers. The topic of participatory health technologies experienced a slightly increasing trend across publication years, with most papers originating from the United States and Norway. Diabetes and cardiovascular diseases were the most common conditions addressed. Of the 32 studies, 12 (38%) evaluated the influence of participatory health technologies on partnerships, mostly with positive outcomes, although we also identified how partnership relationships and the nature of collaborative work could be challenged when the roles and expectations between users were unclear. Six common features of participatory health technologies were identified: patient-professional communication, self-monitoring, tailored self-care support, self-care education, care planning, and community forums for peer-to-peer interactions. Conclusions Our findings emphasize the importance of clarifying mutual expectations and carefully considering the implications that the introduction of participatory health technologies may have on the work of patients and health care professionals, both individually and in collaboration. A knowledge gap remains regarding the use of participatory health technologies to effectively support patient-professional partnerships in chronic care management.

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“…The terminology that we use to talk about knowledge and expertise originates in domains of education and cognitive science, with an emphasis on knowledge state and stages of acquisition (Benner, 2004;Dreyfus & Dreyfus, 1980). This terminology does not fully characterize the different types of knowledge that patients possess including personal attributes, preferences, behaviors, history, self-assessment, and situation assessment (Papautsky & Patterson, 2021). Further, the term patient expertise, seen in British scholarly literature, is not commonly accepted in the US (Sanderson & Angouri, 2013).…”

Section: Terminologymentioning

confidence: 99%

Application of Naturalistic Decision Making to Studying and Supporting Patient Work

Papautsky

Klein²,

Militello

et al. 2022

Proceedings of the Human Factors and Ergonomics Society Annual

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In recent years, there has been growing recognition of the active role of patients in healthcare, highlighting the need to support patient work by designing systems, processes, and communications that are patient-centered. Patients are called upon to make consequential decisions based on complex cognitive and perceptual cues. Some patients may even possess deep knowledge about their condition and its management. However, there is little research applying naturalistic decision making (NDM) to study patient cognition and decision making. This application may have the potential to help understand and support patients to more effectively manage their health, wellness, and safety. In this panel, we address the relevance and applicability of NDM in terms of theory, terminology, and methods to the design of patient-centered solutions.

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Patients Are Knowledge Workers in the Clinical Information Space

Cited by 15 publications

References 60 publications

Characterizing experiences of non-medical switching to trastuzumab biosimilars using data from internet-based surveys with US-based oncologists and breast cancer patients

Characterizing experiences of non-medical switching to trastuzumab biosimilars using data from internet-based surveys with US-based oncologists and breast cancer patients

Digital Health Technologies Enabling Partnerships in Chronic Care Management: Scoping Review

Application of Naturalistic Decision Making to Studying and Supporting Patient Work

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