My Right to My Health Data

People should have the right to full access of our health care data, to know the source of the data, and the right to share our data with people and health care providers that we chose to.

I also personally believe that we should have the right to share in any financial compensation that happens when our data (even de-identified) is sold. Cerner one of the largest EMR's is already selling data to drug companies just one small part of the multi-billion dollar medical data mining industry).

I know how much money (data) I have in the bank and my investment accounts, I know who has access to it, I can download that data from any number of different accounts and even move the money around online, I can supplement my financial data from multiple sources with my own cash transactions and I can then use that new combined data to create a legal document for the IRS.

Why can't I do that with my medical records? Access and download my clinical data from an EMR, import it into a PHR and then send all of it to someone new? Why for that matter can't I just have it on my phone and shake my iPhone at a new provider and give him my health cloud the same way I share business cards now. We have the technology and we have the political will, now all we need is a health data policy. Well as of today we have one.

A grass-roots coalition of consumer advocates, former patients, providers, experts in medical informatics, policy gurus, through leaders and health care co-creators who have come together to raise up our collective voices and create a collaborative statement on the right to our own health data.

United States—June 22, 2009—Today, thought leaders across health care are collaborating to launch www.HealthDataRights.org and unveil a shared statement to ensure patients’ rights to access and share their own health information.

The site, designed to give people a voice in preserving their right to take responsibility for their own information and care, features a Declaration of Health Data Rights that reads as follows:

In an era when technology allows personal health information to be more easily stored, updated, accessed and exchanged, the following rights should be self-evident and inalienable. 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

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.

With broad support across the entire health industry, the Declaration of Health Data Rights and perspectives on what it means will be written about today across the blogosphere, including:

Already endorsed by 80 different organizations like 23andMe (Linda Avery) , Association of Cancer Online Resources, Center for Democracy and Technology, Dossia, DrGreene.com, FasterCures, Google Health (Missy Krasner ), Keas (Adam Bosworth) , Navigenics, O’Reilly Media, Partners Healthcare, PatientsLikeMe (Lori Piscatelli Scanlon, Joe Lind, Jeremy Weiskotten) , TEDMED, WebMD and of course now the Alliance4Health (which represents the 300,000 people who buy their own health insurance in Washington) and people like Alan Greene (Dr Greene), Peter Neupert (Microsoft - Health Solutions Group), Tim O'Reilley (O'Reilley Media), Blackford Middleton, MD (Partners Healthcare), Dave deBronkart (epatientDave) and many others.

According to recent news reports between 20 and 40 Billion will be spent on health IT in the next couple of years to ensure that "providers" adopt health information systems. Many patients, consumers, family members, advocates and other "health co-creators" have been working hard for the last year to ensure that our voice is strong and we are bring the same principals of engagement and transparency that are becoming the new norm for Government 2.0.