Common Barriers to the Use of Patient-Generated Data Across Clinical Settings

West, Peter; Kleek, Max Van; Giordano, Richard; Weal, Mark J.; Shadbolt, Nigel

doi:10.1145/3173574.3174058

Cited by 85 publications

(66 citation statements)

References 41 publications

(81 reference statements)

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“…Providers are likely to need practice protocols to guide clinical responses to the data, visualizations, data reduction, or decision support to help make sense of the information while preventing overload, electronic health record (EHR) integration, and integration into clinical workflow. 3,12,13 Nationality studies, feasibility studies, and demonstration projects to integrate PGHD with EHRs are ongoing. 14,15 Prior to these national studies, in 2012, our academic multispecialty practice sought to facilitate the use of PGHD by enabling an electronic data tracking tool called a flowsheet.…”

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confidence: 99%

Early Adopters of Patient-Generated Health Data Upload in an Electronic Patient Portal

et al. 2019

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Background and Objective Patient-generated health data (PGHD) may help providers monitor patient status between clinical visits. Our objective was to describe our medical center's early experience with an electronic flowsheet allowing patients to upload self-monitored blood glucose to their provider's electronic health record (EHR). Methods An academic multispecialty practice enabled the portal-linked PGHD tool in 2012. We conducted a retrospective observational study of adult ambulatory patients using this tool between 2012 and 2016, comparing clinical and demographic characteristics of data uploaders with those of a group of patients with diabetes diagnoses and patient portal accounts seen by the same health care providers. Results Over four years, 16 providers chose to use the tool, and 53 adult patients used it to upload three or more blood glucose values within any 9-month period. Of these patients, 23 were pregnant women and 30 were nonpregnant adults with diabetes. Uploaders had more encounters and portal log-ins than comparison patients but did not differ in socioeconomic status. Among the chronic disease patients, uploaders' mean hemoglobin A1c and body mass index (BMI) both dropped significantly in the months after upload. Conclusion Despite the potential value of PGHD in health care, the rate of adoption of a tool allowing patients to upload PGHD to their provider's EHR has been slow. Among chronic disease patients, PGHD upload was associated with improvements in blood glucose control and BMI, but it is possible that the changes were because of increased motivation or intensive changes in medical management.

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confidence: 99%

Early Adopters of Patient-Generated Health Data Upload in an Electronic Patient Portal

et al. 2019

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“…Some participants discussed that this reactive approach would extend to their use of self-monitoring technologies. This highlights how current models of self-tracking, which stress the importance of long-term consistent data points generated by the user [50], may not align with the symptom transience evident with CRCs. The notion of designing for symptom transience has been explored in HCI research around Parkinson's disease by McNaney et al [29] and Nunes and Fitzpatrick [11], describing the need for self-care tools to support variability in condition state.…”

Section: Designing For Reactive Managementmentioning

confidence: 97%

“…Similarly, Pols [40] found that daily peak flow readings were seen as counterproductive as they could only be interpreted in unhelpful ways, which did not improve the situation for the individual. This contrasts with the emphasis placed on ensuring patient generated data is being regularly collected to be useful for clinical care planning [50]. What can be deemed clinically relevant to a patient versus a healthcare professional can differ, as Pols [41] described how physiological readings can depict the condition of one's body in a way that may not be experienced directly by the patient themselves.…”

Section: Designing For Reactive Managementmentioning

confidence: 99%

Respiratory Self-Care

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McNaney

et al. 2019

Proceedings of the 13th EAI International Conference on Pervasive Computing Technologies for Healthcare

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Chronic respiratory conditions (CRCs) are life-long diseases affecting millions of people worldwide. They have a huge impact on individuals' everyday lives, resulting in a number of physical and emotional challenges. Self-management interventions for CRCs are thought to provide empowerment and improve quality of life. However, despite the number of people living with CRCs, most self-management tools in previous HCI work have been designed without the insight of those affected by the conditions. In this paper, we contribute to the literature by investigating the experiences and everyday challenges faced by those with CRCs, through the involvement of 156 participants via interviews and an anonymous survey. Our findings reveal the self-care challenges of CRCs and the reactive management approaches taken by participants. We conclude by providing a set of design implications that support the design of future self-management tools for CRCs. CCS CONCEPTS• Human-centered computing → Human computer interaction (HCI); Interaction design process and methods; User centered design

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“…In a clinical visit, self-tracking health data can be helpful for the physician especially when a patient has difficulties to express a clear reason for the visit [40]. West et al [49] confirm that patient-generated data promotes making decisions about further physical examination, but it is not alone sufficient for medical intervention partly due to its unknown accuracy. Current personal informatics tools available for personal data collection have variation in data accuracy, which sets requirements also for users to find personal strategies for making the data accountable [50].…”

Section: Introductionmentioning

confidence: 99%

Expectations to data: Perspectives of service providers and users of future health and wellness services

et al. 2020

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The healthcare and wellness sector currently attempts to provide more proactive service models with data-driven solutions. This study examines the expectations and values related to personal data i.e. data valences from the perspective of service providers and individual users. The study is based on the analysis of extensive empirical material collected through interviews and a collaborative workshop. The data was collected in one cultural context, Finland. The results suggest that the potential service providers and users have similar expectations regarding self-evidence of data while the main differences concern the expectations of transparency. The results of the study propose some basic requirements for the development of personalised data-driven services in future. The study suggests that basic requirements for the development of future data driven services concern expectations to usable data visualisations, data as a motivator, data accuracy and data transparency. Even though there are varying expectations to personal health data and even some concerns, it can be seen that here different ecosystem actors primarily perceived the wider use of personal health and wellness data as a positive trend. It can be concluded that collaborative personal data-driven service ecosystems are an integral part of development towards proactive service models in healthcare.

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Common Barriers to the Use of Patient-Generated Data Across Clinical Settings

Cited by 85 publications

References 41 publications

Early Adopters of Patient-Generated Health Data Upload in an Electronic Patient Portal

Early Adopters of Patient-Generated Health Data Upload in an Electronic Patient Portal

Respiratory Self-Care

Expectations to data: Perspectives of service providers and users of future health and wellness services

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