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Jan 21, 2020 03:33PM
• Have you ever had any problems getting copies of your medical records (so you could share those records with health care providers or keep your own copies)? If so, what happened?
I have found that access to records totally depends on the provider. Some make it easy. Some do not. I try to keep copies of all my records and reports - but it is a lot of work. Once, after I had surgery, the hospital where I had it was in possession of the operative report. It took almost 45 days to get a copy. This delayed my treatment. I was so frustrated. In another challenge, I figured out that some doctors offices had a private set of more detailed records/reports that they were not sharing with me when I asked for them. I was getting only a very bare-bones outline of the visit report. What is most troubling is that this could impact the quality of future care if I cannot get timely access to complete records. It's really frustrating.
• What are the reasons you've found it helpful to have your own copies of your medical records?
I have needed records for getting a second opinion and also for entering a clinical trial. Perhaps more importantly, I learned through dent of painful experience that you need to "quality control," ask questions and demand answers. My diagnosis was delayed when a physician decided to ignore the lesions in my liver, evidently assuming they were benign. I made the mistake of trusting him to make an appropriate diagnosis and recommendations for follow up. I did not get a copy of the imaging report and took his word for it when he said everything was fine. If I had had a copy of the report, I would have seen the explicit reference to lesions and could have gotten another opinion, and appropriate work-up, about why I had lesions in my liver!
• Do you use patient portals and/or third party medical records platforms or apps to access your medical records? If so, what do you see as the pros and cons of these?
I have access to a variety of portals, depending on the provider. All "pro." No "con." I find them very helpful. Could be hacked...and that would be bad...but they are extremely helpful to have access to. One system I use prepares charts that show the trajectory of lab results. Very insightful.
• Do you have any tips on getting, organizing, or saving your own copies of personal medical records?
I keep my copies of records on my computer. I also have many paper records but the volume is crazy (multiple large binders). I did a big scan and organize job this summer. That was really helpful but it's still hard to keep it all straight. I organize records and labs by date and add a brief title. I try to get an extra set of images on DC/DVD. I have had trouble getting these duplicated. (I assume that may have to do with software licensing?)
As regards privacy...on the one hand, with my diagnosis, sometimes I feel like I don't have any anymore. I certainly can't and shouldn't hide information from those with whom I do business and who have a legitimate reason to know, i.e.: a life insurer. But then again, if a private company is accessing my private information and selling it for commercial gain without my permission.... I have a problem with that. I think healthcare related NGO's should do more advocacy around patient privacy rights as regards medical records. HIPAA is too weak. The protection obligation needs to extend to all parties in possession of medical records, not just the providers.
Thanks for this discussion topic.
"We must be willing to let go of the life we have planned, so as to have the life that is waiting for us." "If adventures will not befall a young lady in her own village, she must seek them abroad." "Buy the ticket, take the ride."
2015, DCIS/IDC, Right, 3cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC)
1/13/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
1/14/2016 Herceptin (trastuzumab)
2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+