There is an ongoing push to put a range of medical information online.  This includes patients’ personal health information; billing information; and related health and medical records.  Some of this impetus comes from new HIPAA requirements.  Having electronic health records will make it easier for patients to pay their medical bills online; it also means that patients, doctors, nurses and other health care providers can more easily access and share needed patient information.

For patients, however, this impetus creates new issues and questions about the privacy and security of these electronic records.  HIPAA does have security and privacy rules that have to be followed.  But what can patients do to gain even greater control over their own personal medical and health information?

I found out about one possible way for doing so in a recent article by Marianne Kolbasuk McGee titled “Data Registry Gives Patients Control” (; April 5).  In her article, she discusses a registry that has recently been released called Reg4All.  As described, Reg4All is intended to be a registry that will help patients control the ways in which their health information can be shared and with whom.  Reg4All was created in a partnership between Genetic Alliance and Private Access.  Private Access is described as a company proving privacy technology.  I went to the Genetic Alliance website where I read about its activities as a non-profit health advocacy group that’s been active for over 25 years.

I then went to to the Reg4All website to learn more.  In order to use it, patients will have to enter personal health and medical information. Once that’s done, patients are then asked to answer a number of more specific questions about their health and any medical conditions. They will then have the option of choosing among available privacy settings. The options allow patients to decide if they do or do not want their personal information shared with researchers or to be contacted by researchers who might be looking for persons for clinical trials.

I couldn’t vet all of the Reg4All privacy options since getting to them required entering the above-cited information.  Nor am I endorsing Reg4All.  However, it might be an option you want to explore in case you would like to have a way for connecting with medical researchers and other disease advocacy organizations — either for general background or to learn more about services for yourself, a family member or a friend.