Why don’t I know when someone, something, anyone accesses my personal health data? I get emails from Apple, Google, my banks, credit cards, Facebook when someone attempts to get access to my financial or social media accounts from a different computer or browser than one I’ve authorized. My bank proactively let’s me know when they suspect fraudulent charges. But I have no idea when someone opens, adds to, corrects, uses, sells my health data. I’m pretty much an open book, even pathologically open. After all, I blog about anything. I still would like to know who’s using my health data. If I knew I may be less open. I may still not care. I know data is big, big business. Social media data, Amazon data, health data. It can’t be because it’s not technically possible or too complex. I don’t think I want to interfere with that big business (why try?), but it doesn’t interfere for Facebook or my bank to keep me posted, so why would it interfere for my health data. If the federal government is paying billions to support the electronic health data business through meaningful use incentives, why don’t they require that we be notified of our health data use? Health data sources (hospitals, insurance companies, researchers, etc) spend millions if not billions to prevent hacking, yet hacking occurs regularly. More than 30 million records hacked a year! It takes a long time for companies to discover hacking – often not until thousands of files are hacked. Seems like I could identify health data hacks sooner and then tell the entity that’s hacked.. Wouldn’t I be flooded with notices every time I went to the doctor or went in the hospital? Not if I could authorize access and permission and even assign other people, clinicians, and hospitals to authorize on my behalf. My authorizations could be stored on a server accessible to me and accessible to those wanting to exchange my data. I could go to it to track authorization, change what I allow to whom. What would take for government and industry to want to accomplish this? Is there a threshold of hacking or fines? When I review the literature, little discussion occurs beyond better encryption, more rigid password protection. Why not? Does this matter to you?
Notifying me when accessing my health data
Get New Posts via Email
Your support is appreciated
Subscribe to my podcast:
Subscribe to my YouTube channel:
Categories
Search This Site
Tags:
resilience EMR perception employment OpenNote improv disability shared decision making Giving Blue Button health team superpower MS ePatient Determinants of Health culture PHR immigrants technology innovation choices policy mindfulness evidence safety lived experience questions storytelling Recovery Behavioral Health customer service entrepreneur Simplicity Surveys Nursing research Community Health Health Planning balance multiple sclerosis Pregnancy Exercise standards grief learning Standard Health Record magic lever grace consent goals caregivers threshold Outcomes Medical Record fear access cost Pain health partners Advocates The Quadruple Aim Fibromyalgia PCORI music HIT catalyst chronic pain Best health caregiving Politics PROM interoperability leadership People at the Center of Care Pharma Care Partner Data habits haiku medication portal relationships Communication simulation informed decision-making sax ONC Just-in-Time decisions care planning Quality Measures Mentoring engagement Rest end-of-life adherence transitions palliative care community health literacy social media
4 Comments
Leave a Reply Cancel Reply
This site uses Akismet to reduce spam. Learn how your comment data is processed.
Interesting. With the Mass Highway patients are consenting to have their data shared but I agree with you about being notified who accesses and allowing others.
As usual, good idea, Danny. Jim Grant
Very good points, Danny. I never really thought of that.
Right on brother! It matters to me a whole lot. It does seem like it would be so easy, and shouldn’t I have a right to my information (or at least knowledge of how my information is used)?