Potentials and Challenges of the Health Data Cooperative Model

Abstract

Introduction: Currently, abundances of highly relevant health data are locked up in data silos due to decentralized storage and data protection laws. The health data cooperative (HDC) model is established to make this valuable data available for societal purposes. The aim of this study is to analyse the HDC model and its potentials and challenges. Results: An HDC is a health data bank. The HDC model has as core principles a cooperative approach, citizen-centredness, not-for-profit structure, data enquiry procedure, worldwide accessibility, cloud computing data storage, open source, and transparency about governance policy. HDC members have access to the HDC platform, which consists of the “core,” the “app store,” and the “big data.” This, respectively, enables the users to collect, store, manage, and share health information, to analyse personal health data, and to conduct big data analytics. Identified potentials of the HDC model are digitization of healthcare information, citizen empowerment, knowledge benefit, patient empowerment, cloud computing data storage, and reduction in healthcare expenses. Nevertheless, there are also challenges linked with this approach, including privacy and data security, citizens’ restraint, disclosure of clinical results, big data, and commercial interest. Limitations and Outlook: The results of this article are not generalizable because multiple studies with a limited number of study participants are included. Therefore, it is recommended to undertake further elaborate research on these topics among larger and various groups of individuals. Additionally, more pilots on the HDC model are required before it can be fully implemented. Moreover, when the HDC model becomes operational, further research on its performances should be undertaken.

Visions and Challenges in Managing and Preserving Data to Measure Quality of Life

“…Their aim was to engage 200k users (5% of the population), but due to insufficient registrations the project was abandoned in April 2011. Consequently, researchers explored the challenges of creating cooperative health systems [33], [34]. One of the requirements for those cooperative health systems was a one time fee and many early adopters.…”

From Commercialization to Accountability: Responsible Health Data Collection, Use, and Disclosure for the 21st Century

“…The idea that patients should share in any profits generated as a result of discoveries based upon individuals' personal information is not new. 59,60 Patients also are concerned about being unable to access treatments that are developed using their data while others profit. 61 Although the value of innovation can be measured through sales receipts, the financial value of personal data used in product development is more difficult to assess because individuals value privacy and compensation differently based upon personal circumstances.…”

The Limits of Empowerment: How to Reframe the Role of mHealth Tools in the Healthcare Ecosystem

“…It was (also) a reaction to the sustainability crisis faced by the NHS (Anderson and Gillam 2001;Lettieri et al 2015). This prompted the Government to pivot towards a new proactive paradigm of healthcare provision (Moerenhout et al 2018), focused on delivering 'P4' (personalised, preventative, predictive and participatory) medicine (van Roessel et al 2017).…”

“…The arrival of mHealth technologies (including wearables, self-tracking software and health apps) and the subsequent explosion in the amount of data related to health, have enabled the logic of empowerment to gain more widespread and intense support than ever before (Lupton 2013). (West et al 2016), and most recently the NHS Long Term Plan (2019), 6 have come to rely on the unquestioned belief that people who have unlimited access to their personal health data (van Roessel et al 2017;Swan 2009) will take on the role of what Swan (2012) terms the 'empowered biocitizen.' These empowered individuals are framed as being able to acknowledge that they have both the responsibility (Wardrope 2015) for managing their own health, and the tools for doing so 7 (Swan 2012).…”

“…14 For example, a study by Emil Chiauzzi and colleagues (2016) on factors influencing feelings of empowerment amongst patients using Patients Like Me surveyed 3988 participants and found that those who were older, male, more educated and privately insured all reported significantly higher levels of empowerment. digitally provided information can enable those with the right capacities (Wagner 2018) to ask more relevant and accurate questions, so that they feel more involved in planning for their health (van Roessel et al 2017). This is the case particularly for those living with long-term conditions, who increasingly rely on digital health interventions, such as those within the 'Internet of Healthy Things' network, to maintain independence (Wakefield et al 2018).…”