HIE inPractice Blog Series: Data Ownership – Whose Data is it Anyway?

by: Kim Brant-Lucich, MBA, PMP, FHIMSS, Providence Health & Services

As healthcare workers, we spend our time trying to figure out how to connect with our patients and providers, how to meet meaningful use, and how to secure the data.  However, I prefer to look at the question of data ownership from the patient point of view, so I have asked myself how I feel as a patient.

From that perspective, I believe the data belongs to me.  It is my personal health information and it is all about me.  If my physician prescribes medication or treatment, I want to know why.  I would hope treatment and medication is connected to a diagnosis or unique problem I am having.  Clearly, I was one of those kids who constantly asked the teacher “why?” before doing my homework.  As a patient, I also want to know why – why my doctor is instructing me to eat more oatmeal, less sugar, or more leafy greens, or why the doctor is asking me to check my blood pressure, pulse rate, cholesterol or insulin levels on some periodic basis.

I also believe I am entitled to have my information at my fingertips (or maybe on my insurance card or a thumb drive), so I don’t have to keep filling out that pesky paperwork every time I go to a new physician’s office.  If I have x-rays or an MRI or mammogram, I want to see the images.  I want to be able to transport them with me to whatever provider I visit and sit down to discuss them.  I know that everyone is not like me.  Some people don’t ask questions and may not want to know the detail; others trust their Primary Care Physician with their information.  I suppose some people don’t even know there is something called HIPAA and don’t realize they are entitled to their own information.  That group comes with its own challenges, because they still have to provide permission for their data to be shared and may or may not understand why.  As for me, I just want access to my data and I want any physician treating me to have easy access to it.  I want appropriate documentation submitted to my insurer, so that my services are reimbursed in a timely manner, without numerous repeat phone calls to try to iron out never-ending payer confusion.

I would like to believe that my personal information isn’t going to get hacked, but I do worry about that.  Although I want providers to have access to my health information, I do not believe that my personally identifiable information, especially financial, belongs to anyone other than me.  I don’t even think my employer has a right or need to know about my health conditions, even if they are paying for my insurance.  However, I do think that employers who provide wellness incentives are at least entitled to know that we are availing ourselves of the services they are subsidizing, whether its yoga classes, gym memberships or educational seminars.  Other than that, though, my health information belongs to me.

Whose data is it anyway?  It’s mine.

About Mari Greenberger, MPPA

Director of Informatics at HIMSS North America
This entry was posted in HIEs and tagged , , , . Bookmark the permalink.

2 Responses to HIE inPractice Blog Series: Data Ownership – Whose Data is it Anyway?

  1. Interesting in that most of us feel that way. However point your browser to http://www.healthinfolaw.org/comparative-analysis/who-owns-medical-records-50-state-comparison and you might be surprised the variability across the US in definition and regulations. This has been a huge topic with the Society for Participatory Medicine whose members are seeking ways to influence regulators to codify the ownership of the information and to segregate it from the ownership of the media.
    HIPAA, as we know, has strong penalties in place for those who are storing or otherwise dealing with health information but are doing it in ways that are not secure nor following the dictates of the regulations.
    Personally I don’t think “ownership” is a meaningful term anymore. We now live in a cloud-based world where most of us have ceased being concerned about ownership of things. Right now the best example is music where giving up ownership has given way to purchasing access and as a result we have subscriptions that let us listen to almost anything anytime we want. This just wasn’t possible in the old days of ownership. Next up will probably be vehicles if Uber and other services have their way or if driverless cars become the norm.
    Healthcare has a way to go but I am eagerly awaiting the day all of us (providers AND patients) move into a collaborative cloud based world where we all subscribe to information instead of tying ourselves up with one or two vendors.

    David Voran, MD

  2. Kelly Wagner says:

    By Kim Brant-Lucich, MBA, PMP, FHIMSS, Providence Health & Services

    The 50 state map is indeed enlightening. Clearly, our states are not ready to decide or commit to who owns the data. No wonder this is a huge topic with no resolution in sight. Your suggestion of a cloud based world where everyone subscribes to data is interesting enough, but seems to open up an entirely new question. Instead of asking “who owns the data?,” the question is “who pays for the data, and how much do they pay?” I would worry that lower income and lower education patients may not have the means or knowledge to access the cloud. I also wonder if that approach doesn’t create an even more challenging security and identity nightmare. It would be wonderful if data were easily accessible to the patients and providers who are impacted by that data and need to access it. As we have been saying for years, we need to get “the right data to the right people at the right time.” I guess we still have a bit of a road to travel.

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