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

Häikiö, Juha; Yli-Kauhaluoma, Sari; Pikkarainen, Minna; Iivari, Marika; Koivumäki, Timo

doi:10.1007/s12553-020-00410-z

Cited by 10 publications

(5 citation statements)

References 61 publications

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“…Making them meaningful also means that they will be of value to users. This is what some researchers call “data valences,” 44 , 45 a concept that emphasizes the different expectations and values that data may have depending on the context of their use. In our case, these differences are expressed at two levels: (a) their meaningful use, (b) their “actionability” (e.g.…”

Section: Discussionmentioning

confidence: 99%

Co-designing a digital companion with people living with Parkinson's to support self-care in a personalized way: The eCARE-PD Study

et al. 2022

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eHealth technologies play a role in the development of integrated care models for people living with Parkinson disease by improving communication with their health care teams and support self-care practices in a personalized way. This article presents a co-design approach to designing an eHealth technology, the eCARE-PD platform, that addresses the needs and expectations of people living with Parkinson disease, generates tailored care tips, and recommends actions for managing care priorities at home. We use a co-design approach involving four main iterative phases: (1) preparation, (2) mapping, (3) testing and using, and (4) co-producing solutions and requirements. This approach uses several methods to engage people directly to design this technology. The study allowed us to identify design principles to be integrated in the development of the eCARE-PD platform. These principles incorporate the expectations of future users, which were expressed during the iterative phases of the co-design process: (a) six key design features based on users’ needs and expectations, (b) six main issues users raised during a test at home and key features for improving the design of the eCARE-PD platform, and (c) collective solutions to design an interactive, meaningful, tailored, empathic, and socially acceptable technology. The results of the successive phases of the co-design process allow us to underline the progressive constitution of a technology defined over successive iterations as a digital companion supporting the self-care process at home and having the capacity to generate tailored digital health communication.

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Section: Discussionmentioning

confidence: 99%

Co-designing a digital companion with people living with Parkinson's to support self-care in a personalized way: The eCARE-PD Study

et al. 2022

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“…The growing number of events surrounding these inappropriate uses makes transparency a challenge but also a cornerstone in building trust regarding the use of health data. More than ever in our society, people are expecting to be told exactly how their data are being used [ 35 ].…”

Section: Discussionmentioning

confidence: 99%

Meta-consent for the secondary use of health data within a learning health system: a qualitative study of the public’s perspective

et al. 2021

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Background The advent of learning healthcare systems (LHSs) raises an important implementation challenge concerning how to request and manage consent to support secondary use of data in learning cycles, particularly research activities. Current consent models in Quebec were not established with the context of LHSs in mind and do not support the agility and transparency required to obtain consent from all involved, especially the citizens. Therefore, a new approach to consent is needed. Previous work identified the meta-consent model as a promising alternative to fulfill the requirements of LHSs, particularly large-scale deployments. We elicited the public’s attitude toward the meta-consent model to evaluate if the model could be understood by the citizens and would be deemed acceptable to prepare for its possible implementation in Quebec. Methods Eight focus groups, with a total of 63 members of the general public from various backgrounds were conducted in Quebec, Canada, in 2019. Explicit attention was given to literacy levels, language spoken at home and rural vs urban settings. We assessed attitudes, concerns and facilitators regarding key components of the meta-consent model: predefined categories to personalized consent requests, a dynamic web-based infrastructure to record meta-consent, and default settings. To analyse the discussions, a thematic content analysis was performed using a qualitative software. Results Our findings showed that participants were supportive of this new approach of consent as it promotes transparency and offers autonomy for the management of their health data. Key facilitators were identified to be considered in the implementation of a meta-consent model in the Quebec LHSs: information and transparency, awareness campaigns, development of educational tools, collaboration of front-line healthcare professionals, default settings deemed acceptable by the society as well as close partnerships with recognized and trusted institutions. Conclusions This qualitative study reveals the openness of a sample of the Quebec population regarding the meta-consent model for secondary use of health data for research. This first exploratory study conducted with the public is an important step in guiding decision-makers in the next phases of implementing the various strategies to support access and use of health data in Quebec.

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Section: Ensuring Information and Transparencymentioning

confidence: 99%

Meta-Consent for the Secondary Use of Health Data Within A Learning Health System: A Qualitative Study of the Public’s Perspective.

Cumyn

Barton

Dault

et al. 2021

Preprint

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Background: The advent of learning healthcare systems (LHSs) raises an important implementation challenge concerning how to request and manage consent to support secondary use of data in learning cycles, particularly research activities. Current consent models in Quebec were not established with the context of LHSs in mind and do not support the agility and transparency required to obtain consent from all involved, especially the citizens. Therefore, a new approach to consent is needed. Previous work identified the meta-consent model as a promising alternative to fulfill the requirements of LHSs, particularly large-scale deployments. We elicited the public’s attitude toward the meta-consent model to evaluate if the model could be understood by the citizens and would be deemed acceptable to prepare for its possible implementation in Quebec. Methods: Eight focus groups, with a total of 63 members of the general public from various backgrounds were conducted in Quebec, Canada, in 2019. Explicit attention was given to literacy levels, language spoken at home and rural vs urban settings. We assessed attitudes, concerns and facilitators regarding key components of the meta-consent model: predefined categories to personalized consent requests, a dynamic web-based infrastructure to record meta-consent, and default settings. To analyse the discussions, a thematic content analysis was performed using a qualitative software. Results: Our findings showed that participants were supportive of this new approach of consent as it promotes transparency and offers autonomy for the management of their health data. Key facilitators were identified to be considered in the implementation of a meta-consent model in the Quebec LHSs: information and transparency, awareness campaigns, development of educational tools, collaboration of front-line healthcare professionals, default settings deemed acceptable by the society as well as close partnerships with recognized and trusted institutions.Conclusions: This qualitative study reveals the openness of a sample of the Quebec population regarding the meta-consent model for secondary use of health data for research. This first exploratory study conducted with the public is an important step in guiding decision-makers in the next phases of implementing the various strategies to support access and use of health data in Quebec.

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

Cited by 10 publications

References 61 publications

Co-designing a digital companion with people living with Parkinson's to support self-care in a personalized way: The eCARE-PD Study

Co-designing a digital companion with people living with Parkinson's to support self-care in a personalized way: The eCARE-PD Study

Meta-consent for the secondary use of health data within a learning health system: a qualitative study of the public’s perspective

Meta-Consent for the Secondary Use of Health Data Within A Learning Health System: A Qualitative Study of the Public’s Perspective.

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