Declaration of Health Data Rights

by Lisa Neal Gualtieri, PhD, Adjunct Clinical Professor, Tufts University School of Medicine
We just celebrated Independence Day and can easily see how, in the US, we have rights that we often take for granted until we compare our lives with those of people in other countries. However what are the rights of patients? Loosely modeled after the Declaration of Independence, is a new Declaration of Health Data Rights which states:
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:
1. Have the right to our own health data
2. Have the right to know the source of each health data element
3. 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
4. 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.
This was created by patient advocates, caregivers, health care professionals, technology and policy experts, and entrepreneurs. It is both controversial and timely given government initiatives and the wealth of technology available, as well as recently announced initiatives, such as Beth Israel Deaconess Medical Center’s,pilot program to allow patients to see notes written about them by their doctors.
What do you think about the Declaration of Health Data Rights and the potential impact?

Add comment July 7th, 2009

No Need to Suffer in Silence

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by Lisa Neal Gualtieri, PhD, Adjunct Clinical Professor, Tufts University School of Medicine
With 74% of Americans online and 80-84% of online American using the Web for health information (Pew Internet and American Life and Harris Polls), many pain sufferers are online. But far more people “lurk” than participate actively in health Web sites. Hence I was interested in a blog post that included a slide from Josh Bernoff of Forrester Research from HealthCamp Boston, which shows that people with chronic pain conditions are in the “misery loves company” quadrant and may be “most likely to benefit from and to participate in online social networks”.
What are the implications of this for the design of health Web sites? And can pain itself ever be an impediment to full participation?

4 comments June 2nd, 2009


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