8 posts from June, 2009

It’s National HIV Testing Day

Posted June 27th, 2009 by

Today – June 27, 2009 – is National HIV Testing Day.

AIDS.gov, the one-stop access to U.S. Government HIV/AIDS information and an organization PatientsLikeMe collaborates with to raise awareness of HIV, has been running a campaign all month to promote National HIV Testing Day.  As part of the campaign, AIDS.gov launched the “I Know. I Took the Test” blog series, featuring videos and stories of people talking about what taking an HIV test means to them. The series highlights several HIV testing story campaigns from organizations such as the National Association of People Living with AIDS Exit Disclaimer, POZ Exit Disclaimer, Southern AIDS Living Quilt Exit Disclaimer, The Positive Project Exit Disclaimer, and others.

In support of this campaign, PatientsLikeMe recently invited members of our HIV community to tell us in a few sentences about their experience and/or thoughts about HIV testing.  Here’s what they had to say:

“I think it is probably the single most important thing a person can do for him/herself. The test will show if a person is infected, important knowledge no matter how it turns out.”

“Getting tested for HIV is so important. The knowledge of knowing can make a difference as to how you will live your journey in life.”

“Being tested for me caused me to change my outlook on sex, changed my life in such a way that gives me a opportunity to speak on the importance of being tested , and to share information about treatment, and that there is a life after testing takes place.  If we ever what to see an end to this very serious problem across the world we must continue to speak and encourage testing  in all walks of life.  Moot for me I think not, important to get the word out yes,yes, yes.   Experience is the best teacher.”

“I agree that experience is our best teacher. If you haven’t experienced things how could you give advice?”

“Knowledge is power, knowing your HIV status truly allows you to start living a healthier life, whether you’re are positive or negative.”

Want to know more about how to spread the word on HIV testing? Check out the latest promotions at AIDS.gov and, as always, feel free to share your own experiences there and with PatientsLikeMe.


Patients like me declare our health data rights

Posted June 22nd, 2009 by

“We the people…have the right to our own health data.”

That’s part of a collective new Declaration of Health Rights, officially unveiled tonight on the newly launched HealthDataRights.org. It is time to turn the conversation from fear and privacy to sharing data and finding new treatments and better care.

healthdatarightslogo_graph-1

The Declaration represents reality that what we are doing does not work and does not serve the patient, and this reality is being declared tonight simultaneously via blogs by all stakeholders in healthcare.  I recently wrote about how sharing is a right.  This Declaration articulates these inalienable rights, as it provides a straightforward definition of health data rights to ensure the flow of meaningful data.  We are that much closer to getting you, the patient, at the center of the health system.

This started with a simple conversation; a conversation about sharing data between two health systems that spurred additional conversation and more.  In the end, so many of us agreed that what we need to do is let the data flow and the information become meaningful. Our collective goal is to ensure that healthcare gets better, quality is improved, and yes, treatments are developed faster.  That is what we stand for and that is what we are working to do.

Below is the Declaration in its entirety.  Read it aloud.  Think about what it means to you.  To us, and the thousands of patients we represent at PatientsLikeMe, this Declaration means that we can truly participate in our own healthcare.  To us, the endorsements of well-known and respected healthcare leaders and organizations for this Declaration signify our nation’s unity in preserving the right to have and share health data.  This is why PatientsLikeMe endorses this Declaration.

Once you’ve read it, know that you, too, can endorse our Declaration of Health Data Rights.  To learn more, go to www.HealthDataRights.org and don’t forget, you have the right.

Declaration of Health Data Rights

In an era when technology is allowing 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 are participatory, appropriate and in the interests of each patient. No law or policy should abridge these rights.

So what can you do?  You can endorse it here ; you can endorse it via Twitter (enter #myhealthdata); you can join our  Facebook page and show your support; and perhaps you can even record and share a video reading the Declaration aloud… “I have the right to my own health data.”  Yes, you do.

PatientsLikeMe member jamie