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.