The Value of Openness: The PatientsLikeMe Blog

“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.

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.

Openness.  Privacy.  These philosophies stand in direct opposition in the question of which is better for consumer health.  Should people be open with their health information or private?  Certainly there are times for both, right?

Not according to some privacy advocates.  On October 22, 2008, Deven McGraw from the Center for Democracy and Technology cited a survey on their blog entitled “National Dialogue on Health Information Technology and Privacy” that 67% of respondents were either “somewhat” or “very concerned” about the privacy of their personal medical records.  A glass half-full perspective would say that one-third of respondents think openness is appropriate, at least somewhat.  McGraw summed up the post this way:

Without appropriate protections for privacy and security in the healthcare system, patients will withhold information from the health care providers - or decide not to seek treatment - because of fears about how their personal health information could be misused. Ignoring concerns about privacy - or inadequately address[ing] them - will significantly threaten public trust in these new e-health technologies, and in our overall healthcare system.

It may be a stretch to say make a blanket statement that patients will decide not to seek treatment based on fears about how their information would be used.  Let’s hear from patients themselves.  We asked members of our Multiple Sclerosis community to respond to this statement in our forum.  Here are excerpts from some of their responses:

1. I would withhold info or not seek care due to privacy concerns.  I was thrown into MS and was very forthcoming with everyone, including my former employer.  If I had to do it all over again, I would keep my mouth shut, with the exception of telling my family.  I like the anonymous nature of PLM.  I don’t include my full name so I’m comfortable in noting my dx and symptoms.

2. unfortunately, there really isn’t enough privacy anymore. I just figure to heck with it. If they really want my info they’ll find a way to get it anyways.

3. I believe the benefits of participating in a health care system using online records outweigh privacy concerns. What privacy? Given the resources, anyone can find out anything about my background.

4. Like many, I have mixed feelings about this.  Working in healthcare, I know that there is a HUGE advantage to having all your medical info readily available to any provider.  I can think of many times where I’ve had a patient who couldn’t tell me their history, or what meds they’re taking, and struggling to figure out what was going on.  On the other hand, I also know, from personal experience, that having unauthorized people get access to your health info can have major negative consequences.

5. That [online medical records is] inevitable is probable,but I still believe that we should have the right to say who knows what,when,and if about ourselves.Its about freedom of choice,will and about human dignity!

6. My medical records are open, wanna see? Just look at PLM!!!!!

What a popular question!  We got dozens of responses in less then 24 hours.  What we found is that the one-in-three ratio holds.  Of our patient member responses, two out of three have either not sought treatment or wouldn’t seek treatment because of privacy concerns.  The other third believes that privacy doesn’t exist or doesn’t help people.  Although anecdotal, this is quite a finding and reflects what we believe to be the true nature of this debate:  There are times for openness and times for privacy.  Patients simply want control over when each is employed.

Do we ultimately know that sharing health information online is “safe”?  We answer that question in one of our FAQs, but the short answer is we don’t know.  Yes, there are risks that information will be misused.  But what we also know is that there is a benefit/risk equation for people and their health.  And when research is slow and treatment options are scarce, patients turn to each other for help and support.  They can’t wait 10 years or more for traditional clinical research.  Sharing becomes the best option.  The internet then becomes the most powerful medium to share information, identify new best practices, and ultimately create new medical evidence.

Our Openness Philosophy discusses how sharing health information is actually a way to democratize health data for the benefit of all stakeholders, patients, physicians, researchers, caregivers, and industry as well.  We can’t answer the question for you posed in the title.  Only you can decide if sharing health information online is for you.  We just want to give you the opportunity if and when you’re ready.

We would love to hear what you think!  Continue the conversation by leaving us a comment.