Co-Design Workshop (16 November 2017 9am-3pm)
Wellington Park Hotel, Malone Road, Belfast
The primary goal of the MIDAS Project is to address the needs of policymakers and citizens through the delivery of a unified big data platform. In order to ensure that the information provided by the MIDAS platform is actionable, the technical implementation will adopt a user-centred design approach, thus maximising the positive impact on health policy across Europe. This means that stakeholders will be involved at an early stage in helping to co-design the MIDAS user experience.
The MIDAS consortium includes a wide range of experts from academia, business and the public, with a mixture of both technical and policy knowledge. By including as broad a range of expertise as possible in the design of the system, the project aims to effectively meet user needs and to be as usable as possible.
As part of this participatory innovation approach, the MIDAS team will be holding a Co-Design Workshop on 16 November, which will be open not only to consortium members but also to the wider public. The workshop will take participants through a staged process, which will include the development of “personas” (i.e., typical users of the system), the identification of “user stories” (simple, non-technical descriptions of user requirements), and the brainstorming of “wireframes” (interface design ideas) on paper and online. In order to make the event as engaging as possible, participants will be grouped into active teams.
This event should be of interest to anyone – policymakers, technologists and business people – who would like to get a deeper understanding of the MIDAS project and of how big data can be used to improve public policy. It will be designed to be enjoyable and useful for both technical and non-technical stakeholders, and will provide an insight into how participatory design methods can make technology more effective and meaningful for individuals and organisations.
Consent, Ethics & GDPR Workshop (17 November 2017 9am-1pm)
Loughview Suite, Jordanstown Campus, Ulster University
Health care delivery should always be underpinned by the evidence base. The evidence is created and maintained through the acquisition and interrogation of data by those with the skills and ability to understand and action this analysis at a variety of levels, to meet individual need, organisational need and population need. With increasing complexity in healthcare systems, comorbidities, genomics, aging population, financial pressures, personalised medicine, complex imaging, EHRs etc., there is an opportunity to utilise this data to drive innovation, quality and service.
Since its inception, the MIDAS project has integrated the need for ethics and good practice through its structure and outcomes. The consortium is acutely aware of the sensitivities when working with data, even in the context of anonymised or pseudo-anonymised data, as well as the organisations and parties that may potentially have access to this data. One needs only to look at recent stories in respect of the NHS and Google to understand how perception and protection are key considerations when moving in this domain, as well as implementing the requirements of the General Data Protection Regulation (GDPR) which became law in 2016, and must be in place in organisations by May 2018.
At its heart, MIDAS aims to create a viable model of consent and good practice that will ensure data is used appropriately, meaningfully and transparently to underpin the policy cycle. This will lead to the creation of a coherent and pragmatic system that recognises and protects individual participation whilst maximising the benefit for society as a whole.
To this end, the consortium have developed a half day workshop that aims to bring interested parties together from academia, business, the public and the clinical domain to discuss some of the early lessons learned and findings from the project, and to gain insight from potential end users including their needs and requirements going forward with particular emphasis on the GDPR.