Patients Want to Share Their Medical Data

During the recent Dell Healthcare Think Tank which I took part in, I had an idea that I think is incredibly powerful and not talked about nearly enough. In fact, I think its reasonable to say that if we want to get healthcare costs down, then we have to learn how to do this well.

The idea revolves around how we talk about privacy of health information with patients. Far too often, patients just hear news reports that talk about all of the reasons they should fear their health information getting out in the open. Instead, they almost never hear stories about how having their health information shared with the right people will actually improve their health.

The simple fact is that if you lead with all the bad things that could possibly happen with health information in the wrong hands, then of course no patient is going to want their patient information shared. However, if they know how sharing their health information with the right people will improve their care, then patients are more than willing to share away.

Basically, what I’m saying is that sharing healthcare data has been marketed wrong. The privacy advocates are well organized and have many people fearful for what will happen with their health information. I don’t have any problem with privacy advocates, because they help us to pause to take a reasonable look at the importance of privacy. However, the need for proper privacy controls doesn’t mean that we don’t share healthcare information at all.

The beauty of all of this is that the majority of people think this is how it happens in healthcare today. They don’t realize that quite often their healthcare information isn’t traveling with them to specialists and hospitals. In fact, when patients discover that it doesn’t they’re usually quite surprised and don’t understand why it doesn’t.

I hope we can work on the data sharing message. We can share your data with the people who need it so we can improve your care. If patients hear this message, healthcare data sharing will not be feared but embraced.

About the author

John Lynn

John Lynn

John Lynn is the Founder of, a network of leading Healthcare IT resources. The flagship blog, Healthcare IT Today, contains over 13,000 articles with over half of the articles written by John. These EMR and Healthcare IT related articles have been viewed over 20 million times.

John manages Healthcare IT Central, the leading career Health IT job board. He also organizes the first of its kind conference and community focused on healthcare marketing, Healthcare and IT Marketing Conference, and a healthcare IT conference,, focused on practical healthcare IT innovation. John is an advisor to multiple healthcare IT companies. John is highly involved in social media, and in addition to his blogs can be found on Twitter: @techguy.


  • At one level or another all disease is social. Bacteria, Viruses and even genes follow and mimic human social activity. Treatment of most diseases involves more than one person in a social relationship and is most effective when targeting the patient’s social environment.
    Patients inherently understand this and will almost always share what happened between them and their physicians to others in this social network. In return they get advice, opinion and often the needed support required to overcome their disease or manage a chronic condition effectively.
    They also are wanting confirmation of their physician’s diagnosis by other physicians and feel confident when there’s agreement. When there’s not or the diagnoses is not forthcoming they often will seek out other physicians until the diagnosis is reached.
    We all understand this inherently and yet our regulations seem to be at odds with creating systems that leverage the social nature of disease and healthcare.
    Have always said that we need a social architecture to our EMR/EHRs and until we align our information systems with the bacteria, viruses and genes we’ll never be able to effectively prevent disease and improve the health of our patients. A corollary of this is that until the patient is the primary user of them we’ll never get a good return on our investments.

  • Sharing of healthcare information is not the issue. It is more with who controls the access or sharing? As a patient I have no problem if my doctors have access to needed medical information that will improve my care.

    But when the rules of access and sharing are made by those outside of the exam room, when the rules are made by govt, insurers, bureaucrats who have different motives/motivations, well, I have a problem with that.

  • “We all understand this inherently and yet our regulations seem to be at odds with creating systems that leverage the social nature of disease and healthcare.”

    I agree. This is a crux of the problem. Although, you can also look at the history of EHR and see why this is the case. They were built as billing engines and not care engines. If they were care engines they’d have this social component built in.

    That’s a huge part of the problem. Many people who want the information can’t get it when they should be able to get it. In many cases there’s a stigma around data sharing of any kind. We need to get past that and make it possible for those that do need the information to have it.

  • Actually, patients are willing to share their medical data if they can be assured of the privacy and security of those information. I did my master degree research on Ethics, privacy and security of Genetic information on EHR. According to the Methodology, I proposed some security mechanisms to the people and the results were amazing. The respondents supported those mechanisms to add extra-layer of security to EHR for them to be able to share their information.

  • Adebayo,
    Yes, I think that’s what I try to describe in my post but likely didn’t describe well. The core is that patients are happy to share the data with those that need it as long as the privacy is good.

    The problem with most privacy violation reports is that they make it look like any sharing is a security violation when it’s not. We just don’t hear enough stories about good data sharing that improves patient care and still preserves the privacy of the info for the patient.

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