MyData Health seeks to create a consortium with IEEE for the purpose of creating a participatory design process for creation of white papers on the topic of creating a fair health data economy.
The potential economic power of health data is massive, with a $7.2 trillion worldwide market, and a $3.5 trillion US market. In many areas of the world, there is felt to be overrepresentation of industry on topics of ethical use of patient data. The impact of this imbalance is a misalignment of stakeholder interests with patient data being used in ways not in the interests of patients and healthcare providers. MyData Health seeks to level the playing field for all stakeholders in this important conversation on how to create a fair health data economy to serve the potential benefits for each individual patient, global public health, and society at large.
Given the demonstrated excellence of MyData Global and IEEE in successful participatory design systems and process, MyData Health feels a consortium between these groups creates the perfect conduit for creation of respected and credible global intellectual content on the topic of health data and global economics to foster better alignment between the various stakeholders’ interests and goals.
The goal of this consortium is to use a participatory design process to assist in the development of white papers on the general topic of creation of the fair patient data economy. We define a fair patient data economy as one where each and every individual retains the ability to freely and knowingly participate and substantially contribute to the data economy. A key component for a fair economy thus includes protection of core individual digital rights. Given the excellence of both IEEE and MyData in participatory design processes, a consortium between these organizations provides excellent core processes and governance infrastructure to assure the integrity of a participatory design process.
We welcome new participants from large and small corporations, academia, industry, and government agencies that are interested in MyData Health/IEEE White Paper Consortium. Healthcare industry members will include but are not limited to:
Possible Industry Outcomes
Proposed deliverables and outcomes from this Industry Connections activity may include documents (e.g., white papers, reports), proposals for standards, conferences and workshops, databases, computer code, etc.
How to Participate
To join the MyData Health/IEEE White Paper Consortium team, please express your interest by sending an inquiry to: