Designing Free-Living Reports for Parkinson's Disease

Branco, Diogo; Bouça, Raquel; Ferreira, Joaquim J.; Guerreiro, Tiago

doi:10.1145/3290607.3313032

Cited by 6 publications

(6 citation statements)

References 6 publications

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“…As the number of connected devices begins to rise [55], so then do the opportunities to implement them within health and care services. One particular area of interest is the potential for new data flows to augment clinical decision making [74,6]. Our work highlighted several opportunities for supporting the clinical assessment of Parkinson's which, as we have discussed is currently conducted using subjective assessments which have low levels of resolution and are prone to cross-rater inaccuracies.…”

Section: Data Supported Decision Making In Carementioning

confidence: 93%

Future Opportunities for IoT to Support People with Parkinson's

McNaney

Tsekleves

Synnott

2020

Proceedings of the 2020 CHI Conference on Human Factors in Computing Systems

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Recent years have seen an explosion of internet of things (IoT) technologies being released to the market. There has also been an emerging interest in the potentials of IoT devices to support people with chronic health conditions. In this paper, we describe the results of engagements to scope the future potentials of IoT for supporting people with Parkinson's. We ran a 2-day multidisciplinary event with professionals with expertise in Parkinson's and IoT, to explore the opportunities, challenges and benefits. We then ran 4 workshops, engaging 13 people with Parkinson's and caregivers, to scope out the needs, values and desires that the community has for utilizing IoT to monitor their symptoms. This work contributes a set of considerations for future IoT solutions that might support people with Parkinson's in better understanding their condition, through the provision of objective measurements that correspond to their, currently unmeasured, subjective experiences.

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Section: Data Supported Decision Making In Carementioning

confidence: 93%

Future Opportunities for IoT to Support People with Parkinson's

McNaney

Tsekleves

Synnott

2020

Proceedings of the 2020 CHI Conference on Human Factors in Computing Systems

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“…Returning DHT-derived data back to the patients. Return of summarized health data to participants, especially those collected using DHTs, has recently been recognized as preferred by patients 48 and known to help motivate patients and encourage communications with clinicians 49 . This serves as an opportunity for continuous patient engagement during the digital measure development process.…”

Section: Establishing Dht Acceptability and Feasibility Through Real-...mentioning

confidence: 99%

Patient-centricity in digital measure development: co-evolution of best practice and regulatory guidance

Aryal,

Blankenship,

Bachman

et al. 2024

npj Digit. Med.

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Digital health technologies (DHTs) have the potential to modernize drug development and clinical trial operations by remotely, passively, and continuously collecting ecologically valid evidence that is meaningful to patients’ lived experiences. Such evidence holds potential for all drug development stakeholders, including regulatory agencies, as it will help create a stronger evidentiary link between approval of new therapeutics and the ultimate aim of improving patient lives. However, only a very small number of novel digital measures have matured from exploratory usage into regulatory qualification or efficacy endpoints. This shows that despite the clear potential, actually gaining regulatory agreement that a new measure is both fit-for-purpose and delivers value remains a serious challenge. One of the key stumbling blocks for developers has been the requirement to demonstrate that a digital measure is meaningful to patients. This viewpoint aims to examine the co-evolution of regulatory guidance in the United States (U.S.) and best practice for integration of DHTs into the development of clinical outcome assessments. Contextualizing guidance on meaningfulness within the larger shift towards a patient-centric drug development approach, this paper reviews the U.S. Food and Drug Administration (FDA) guidance and existing literature surrounding the development of meaningful digital measures and patient engagement, including the recent examples of rejections by the FDA that further emphasize patient-centricity in digital measures. Finally, this paper highlights remaining hurdles and provides insights into the established frameworks for development and adoption of digital measures in clinical research.

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“…Ils ont aussi procédés avec les questionnaires et les entretiens tout au long de l'étude réalisée. [28], [35], [3].…”

Section: La Conception Des Logiciels Sur La Maladie De Parkinsonunclassified

Vers une conception centrée sur l’utilisateur ayant un profil évolutif: Une étude de cas avec des personnes atteintes de la maladie de Parkinson

Lepreux

Apedo

Oliveira

2021

32e Conférence Francophone Sur l'Interaction Homme-Machine

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Providing assistance to people with progressive diseases, such as Parkinson's disease, is a major challenge. The needs of these users change from moment to moment over a short, medium or long period. Our study focuses on communication disorders in people with Parkinson's disease. In order to implement a technology solution to meet their needs, it is essential that the end users of evolving profiles are at the center of the design. For this, we realized the need to adapt the user-centered approach presented in the IS0 / IEC 9241-210 standard to consider the evolving profile. In addition, we explicitly integrate the principles of participatory design into the approach. The proposed approach is being used to develop a useful and scalable communication tool for different user profile. CCS CONCEPTS• Human-centered computing → HCI design and evaluation methods; HCI theory, concepts and models.

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Designing Free-Living Reports for Parkinson's Disease

Cited by 6 publications

References 6 publications

Future Opportunities for IoT to Support People with Parkinson's

Future Opportunities for IoT to Support People with Parkinson's

Patient-centricity in digital measure development: co-evolution of best practice and regulatory guidance

Vers une conception centrée sur l’utilisateur ayant un profil évolutif: Une étude de cas avec des personnes atteintes de la maladie de Parkinson

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