Unleashing the Potential of Ethical and Cooperative Health and Care Data
* Report: Unleashing the potential of health and care data. By Annemarie Taylor and Emily Jones. Future Care Capital, 2017
Description
"Future Care Capital seeks a step-change in health and care and believes that a concerted effort to unleash the potential of health and care data could significantly improve outcomes for everyone in our society. This report explores how the United Kingdom (UK) might support data-driven research and innovation to transform health and care. It also makes plain that, to achieve this, the UK needs to blaze a trail in the development of ‘data ethics’ to proactively build trust whilst safeguarding individuals."
Excerpt
Recommendation:
- "Introduce a national Government programme to pilot the development of new health and care Data Cooperatives, Data Communities and Data Collaboratives to promote a culture of data philanthropy through the demonstration of tangible health and care outcomes delivered by a range of ‘trusted vehicles’."
Annemarie Naylor on Data Cooperatives:
"Broad-ranging initiatives are adopting innovative approaches to Information Governance that are explicitly designed to empower individuals or data subjects. These are sometimes referred to as ‘platform cooperatives’, where they are principally concerned with democratising the ownership of data-driven organisations, and have tended to arise as ethical alternatives to sharing or gig economy platforms fashioned in Silicon Valley like Uber, AirBnB and Task Rabbit (Platform Cooperativism, n.d.). Here, we are interested in ‘data cooperatives’ – a subset of the platform cooperative movement - where user-members are empowered to contribute and control access to/use of the personal data that underpins them for mutual benefit.
A data cooperative leverages mutual benefit from the personal data contributions of its usermembers. Examples of generic data cooperatives include The Good Data and Our Data Mutual – both of which are designed to function as data brokers to generate a financial return for reinvestment in good causes or distribution amongst members.
The potential benefits of data cooperatives outlined by Tait include:
• they are owned by their membership and therefore should be more accountable; • they have the potential to put a halt to the over-collection of personal data through representing data subjects and advocating on their behalf; • they have data policies that reflect the wishes of their membership; • they can form around single issues or scale with many data subjects; and • they can help their membership understand how their data is used – i.e. improve data literacy (Tait, 2015).
From the point of view of health and care, the best-known data cooperative is the MiData Coop initiative established in Switzerland, which will formally launch in Autumn 2017.
Despite considerable international interest in data cooperatives in recent years, relatively few have been developed in practice or, else, remain under development at present. There are, nonetheless, related initiatives in train – including the Decode Project – which are piloting the development of tools to put individuals in control of their personal data. When considered alongside interest in new blockchain-based technologies, these point toward the potential of data cooperatives to function as user-led trusted vehicles to facilitate health and care data philanthropy in future."
Example
MiData Coop
URL = http://www.midata.coop
Annemarie Naylor:
"MiData is a health data cooperative. Once it is launched in earnest, it will offer a platform to which user-members can upload copies of their medical data, as well as real-time information from a range of mobile and wearable devices. MiData hopes to become a gatekeeper for this data, attracting researchers, while permitting users a high degree ofcontrol over who can access and make use of their personal data in the service of specific aims. Companies will pay a fee to use the data for research purposes, and any surplus revenue generated will be re-invested by the cooperative’s General Assembly – which is comprised of MiData’s user-members – in pertinent research projects with a public benefit mission.
Midata has already succeeded in funding much of its development via paid research trials to explore post-operative well-being after bariatric surgery and test the effectiveness of a new treatment for patients with chronic multiple sclerosis – attracting early users to the platform and demonstrating proof of concept to researchers. Looking ahead, although MiData will be a cooperative for Swiss citizens, the software it has produced will be freely licensed to other data cooperatives that meet its community guidelines, and talks are underway to establish a German health data cooperative in the first instance. It will also seek to establish a global federation of data cooperatives and is developing software to facilitate data sharing between them (Platform Cooperativism, 2017)."