Patients’ Information Needs Related to a Monitoring Implant for Heart Failure: Co-designed Study Based on Affect Stories

Davat, Ambre; Martin-Juchat, Fabienne

doi:10.2196/38096

Cited by 2 publications

(3 citation statements)

References 57 publications

(61 reference statements)

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“… 40 The results from this study and others highlight the importance of key device features for patients. 39 , 41 – 44 Attention must be given to studies such as ours, given the goal of improving quality of life for the device end user. A greater understanding and adoption of patient-centric design by the dialysis community will allow more efficient product development in an industry increasingly under the pressure of narrowing margins.…”

Section: Discussionmentioning

confidence: 99%

Peritoneal Dialysis (PD) Patient and Nurse Preferences around Novel and Standard Automated PD Device Features

Sloand,

Marshall,

Barnard

et al. 2024

Kidney360

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Background: Despite offering greater lifestyle benefits to patients with end stage kidney disease (ESKD), adoption of peritoneal dialysis (PD) remains low globally, particularly among minorities and the socioeconomically disadvantaged. While automated PD (APD) affords a high potential for reducing the burden of kidney replacement therapy, understanding patient preferences is critical to guiding development of new and improved APD devices to better accommodate use in their daily lives. Methods: A quantitative cross-sectional survey study was performed using adaptive conjoint analysis (ACA) to quantify APD feature preferences among PD patients, PD nurses (RNs, and non-PD patients to ascertain the relative importance of eight specific cycler attributes including portability, noise, setup time, device size, setup directions, battery power, consumables, and PD RN control (PD RNs only), each with 2-3 descriptive feature levels. Results: 42 PD patients, 24 non-PD patients, and 52 PD RNs were surveyed. Preference shares spanned nearly the entire range from 0% to 100%, indicating strong preference discrimination. For all groups, “Portability in the Home”, “Noise Level”, and “Setup time” were the most important features. PD patients gave highest priority to these features compared to other study participants, plausibly as features enabling improved lifestyle. A simulated “coat rack” style cycler with extended battery-power that was easy to move in the home, silent, required only 10-minute setup, and had a fully animated instruction screen was preferred by all groups > 90% compared to features present in existing cyclers. Conclusions: Addressing APD cycler technical and therapy-related issues to improve usability, comfort and convenience within the home may affect PD uptake and retention. Attention and priority must be given to patient centric APD cycler design directed at including features that improve quality of life for the device end-user.

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Section: Discussionmentioning

confidence: 99%

Peritoneal Dialysis (PD) Patient and Nurse Preferences around Novel and Standard Automated PD Device Features

Sloand,

Marshall,

Barnard

et al. 2024

Kidney360

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“…The aim was to gather the perspectives of a wider and more diverse panel of patients, by broadening our call for participation. More details on this part of the study (including participant quotes) can be found in Davat and Martin-Juchat (2023).…”

Section: Qualitative Research To Broaden the Perspectives Of The Studymentioning

confidence: 99%

“…We reminded them the context and objectives of the project. Then, we presented the results of our research, hypothesis by hypothesis, as detailed in Davat and Martin-Juchat (2023).…”

Section: Qualitative Research To Broaden the Perspectives Of The Studymentioning

confidence: 99%

Co-design with affect stories and applied ethics for health technologies

Davat,

Martin-Juchat,

Ménissier

2024

Front. Commun.

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The integration of digital health technologies in clinical practices and everyday lives of patients raises several issues. Some of them are related to applied ethics. Co-design with patients and, more generally, participatory approaches are increasingly seen as a way to tackle these issues early in the innovation process. This opens the way to an “ethics by co-design.” In this article, we will present the high ambitions of this approach and discuss three challenges raised by ethics by co-design. We will argue that a co-design approach based on affect stories is a way to address these challenges. Then we will focus on a concrete example of a European research project, to discuss the gap between these ethical and theoretical ambitions and what can be achieved in practice. This project aimed at developing an implantable connected device for the monitoring of heart failure, while addressing the ethical, legal and social issues raised by this new technology. However, co-design with patient representatives was in fact limited to a small part of the project: the design of an information module. Based on 18 meetings with a team of 4 patient partners, and 26 additional interviews with patients, we were able to better understand patients’ experiences and priorities in terms of ethics. Together, we co-designed an information module that embodies a vision of the device negotiated between the patients and the technology designers.

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Patients’ Information Needs Related to a Monitoring Implant for Heart Failure: Co-designed Study Based on Affect Stories

Cited by 2 publications

References 57 publications

Peritoneal Dialysis (PD) Patient and Nurse Preferences around Novel and Standard Automated PD Device Features

Peritoneal Dialysis (PD) Patient and Nurse Preferences around Novel and Standard Automated PD Device Features

Co-design with affect stories and applied ethics for health technologies

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