Gimme My Damn Data (and Let Patients Help!): The #GimmeMyDamnData Manifesto

Area of Science:

• Health Informatics
• Digital Health
• Patient Empowerment

Background:

• The 2009 Medicine 2.0 conference featured a keynote by "e-Patient Dave" deBronkart.
• The conference, organized by JMIR, focused on participation, openness, and social networking in healthcare.
• Patient participation was a central theme, highlighting the growing importance of patient involvement.

Purpose of the Study:

• To commemorate the 10th anniversary of "e-Patient Dave" deBronkart's keynote speech.
• To celebrate the impact of the "Gimme My Damn Data" (#GMDD) movement on participatory medicine.
• To publish the keynote transcript as a manifesto for patients' data access rights.

Main Methods:

• Analysis of the historical significance of the 2009 keynote speech.
• Review of the impact of the #gimmemydamndata hashtag and movement.
• Publication of the keynote transcript to advocate for patient rights.

Main Results:

• The keynote "Gimme My Damn Data" became a rallying cry for patient data access.
• The event is considered a defining moment for the participatory medicine movement.
• #GMDD galvanized patients in demanding access to their electronic health records.

Conclusions:

• The #GMDD movement significantly advanced patients' rights to access their health data.
• The participatory medicine movement has been profoundly shaped by the demand for data access.
• This manifesto reinforces the ongoing need for patient empowerment and data ownership.