Should You Share Your Health Information Online?

Posted October 24th, 2008 by

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?

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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.

PatientsLikeMe member dwilliams


13 Comments

  1. […] open with their health information or private?  Certainly there are times for both, right?” Article The Value of Openness, 24 October […]

  2. Hi David,

    I analyze polls for a living so I may be especially skeptical (and sometimes enamored) of survey data. “Privacy” is a term that has so many meanings that it’s become meaningless (and I try to resist polling about it) which is why I love Daniel Solove’s taxonomy in “Understanding Privacy” (http://docs.law.gwu.edu/facweb/dsolove/Understanding-Privacy/)

    I’ll also put in a plug for two other essays on the topic of health privacy:

    Common Framework for Networked Personal Health Information
    http://e-patients.net/archives/2008/06/common-framework-for-networked-personal-health-information.html

    Health 2.0 and Privacy Lost
    http://e-patients.net/archives/2007/12/health-20-and-privacy-lost.html

  3. Susannah,

    Thanks for these resources. I think people should have as much information as possible about the issues of personal health data.

    We know where we stand, and are building evidence everyday on the benefits of open sharing of health information with patient controls can help drive healthcare in a positive direction.

    David

  4. Although I understand that privacy is important and everyone deserves privacy, i believe that the type of help that people can get due to the sharing of information like this is great.
    God gave us all gifts and i believe that he wants us all to use those gifts to help each other.
    This type of information can possibly make a real difference in someone’s life.

  5. Kim,

    Thanks for your comments. Our goal at PatientsLikeMe is to use this information to help create new evidence to help patients and their health care teams collaborate on the best treatment plan.

    With more people like you, we will achieve this mission.

    David

  6. Privacy is important but honesty and openess about my condition, MS, is very useful. I work full time and have been with the Blues for almost 18 years. The people that I work with, my family and friends understand about my particular condition and MS in general.

    It has been very educational and useful for everyone concerned as well as myself.

    I don’t feel isolated, and my friends and coworkers are more confortable around me.

  7. Toni,

    Thanks for sharing your story. It may inspire others who are on the fence about sharing their conditions with their co-workers. That direction isn’t for everyone, but I suspect there are many more people like you out there.

    David

  8. This is kinda interesting. First off, the question posed was – Would you withhold information from your health care provider–or not seek care at all–based on concerns about the privacy of your health information?

    Second, not dozens of persons responded. Only about a Baker’s dozen in those 24 hours.

    Third, the couple of individuals who had no qualms about being an open book also do not have employment concerns. The other few cited eliminating medical error, primarily in an emergency situation.

    Fourth, the individuals who overwhelming would not choose to have their entire medical records be open even to only necessary medical personnel cited issues of record accuracy, doctor bias/prejudice, possible subjective opinion prevailing in record, threatened employment, and then general privacy issues.

    I’m sorry, the issue is not as simplified as you have attempted to make it. Also, there is the issue of where respondents live and how their country may propose different solutions to improving their healthcare system.

    There are many patients, like myself, who did not bother even answering the question posed on the forum.

    You say – 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.

    I say – you see in the responses what you wish to see. The discussion was not initiated on the issue of “openness” and it certainly was not focused on patients “sharing” with other patients or their family/friends.

    It’s better not to mix issues and discussions here.

  9. I think theree is a big difference between anonymity and lack of privacy. Anonymnity allows for openness and all the valuable effects.

    As a retired private praactice psychotherapist, my experience has taught me that good practitioners keep their patient’s privacy as a sacred trust. If their cases must be discussed, it is without identifyiing factors. I’ve worked for human resoures departments and to my knowledge, no one has had repercussions from their sessions with me.

    When fear of loss of privacy stops people from seeking medical care, it iis clearly a dangerous situation.

  10. Is there anyone else on the site who suffers from renal failure?

  11. The web is a scary place but we cannot feel afraid to be connected to a site that is helpful to those of us with Medical disorders.
    In todays society most of our privacy has went out the window anyways. I think as far as legal issues maybe they should make a law where employers etc., cannot use your open medical records against you in order to do away with your employment status.
    Ann

  12. I rarely create comments, however after reading through a ton of comments here The Value of Openness: The PatientsLikeMe Blog » Should You Share Your Health Information Online?. I do have a few questions for you if it’s allright. Is it only me or does it give the impression like some of the responses come across as if they are left by brain dead people? 😛 And, if you are writing on other online sites, I would like to follow you. Would you list of the complete urls of your social networking sites like your Facebook page, twitter feed, or linkedin profile?

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