A high profile coalition of patient advocates, US doctors, software vendors and bloggers have launched a Declaration of Rights for health data, HealthDataRights.org.
The new site aims to use social media to build support for increasing patient access to electronic health records. Although launched in the US, HealthDataRights appears universal in its aspirations.
The main objective of the site is to promote a ‘Declaration of Health Data Rights’, that, in emulation of the 1776 US Declaration of Independence states, “we the people”:
- Have the right to our own health data;
- Have the right to know the source of each health data element;
- Have the right to take possession of a complete copy of our individual health data, without delay, at minimal or no cost; if data exist in computable form, they must be made available in that form;
- Have the right to share our health data with others as we see fit;
The site goes on to add, “These principles express basic human rights as well as essential elements of health care that is participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.”
Visitors to the site are asked to endorse the declaration using social media. Organisations and vendors listed as endorsing the site reads as a roll-call of e-health 2.0 and personal health records digerati.
Among the organisations listed as endorsing the Declaration are Google Health, Microsoft, 23andMe, Dossia, the Personal Genome Project, and The Centre for Technology and Democracy.
Individuals can endorse the declaration either by submitting their endorsement via the website or by using the hash code #myhealthdata on Twitter.
Among the endorsements posted so far is one by Dr Alan Greene, that states: “Having our health data is like having keys to the car: we move from passengers to drivers of our health & our healthcare system. Buckle up.”
High profile names listed as endorsing the Declaration include Tim O’Reilly, often named as the godfather of Web 2.0; Microsoft Health VP, Peter Neupert; leading health futurologuist Matthew Holt; and Richard Smith ex-editor of the British Medical Journal.
Smith says on his endorsement, “Important not just in the US but worldwide. Certainly important here in the UK.”
At the time of publication, some 605 personal endorsements had been posted on the site.