Questions about your medical records, need your feedback

I had many surgeries and switched doctors several times throughout my process (different needs, surgical revisions, went out of network), so I found it necessary to keep my own copies of medical records and imaging. I suggest getting an extra copy of your imaging CD so that you can send it to other doctors if needed. I also requested my surgical notes from a previous surgery when I changed plastic surgeons and learned some important things about my surgery that were not shared with me. The staff will not offer the surgical notes, but if you request them, they must share them. They are very enlightening, sometimes containing the surgeon's personal impressions about the necessary treatment that are not shared professionally at the time, and also useful if your treatment continues on. I also eventually scanned all of my documents so that they were in an electronic format which made them easy to share. I'm nearly 8 years out, so all of the details that I obsessed over at the time are very hazy now (hooray). In the case of recurrence, I have a complete file with all of my own notes. Best wishes to all.

The system I am in we can access online everything but if you use a doctor in the same system they automatically have access to everything anything you need to get them nothing. You can download and print copies of reports or save to a drive or disk yourself if you are out of the system. Some tests though are only released to patients if the doctor authorizes release.

My BS, MO, and urologist use a different electronic system than my PCP did, so she didn't have instant access to my records. They did keep her updated via email, but she ignored those until I had an appointment with her, after all my active treatment was done. I had to guide HER through all my recent medical history, and she spent the entire appointment catching up (and freaking out a bit) over all that had happened in the seven months since I'd seen her. I promptly fired her. My new PCP, in the same system as the old one, has no problem keeping current with the specialists. So I'd advise anyone whose doctors use different online records, to make sure there is some line of communication between the doctors so you, the patient, don't wind up doing their work for them.

Have you ever had any problems getting copies of your medical records...Some places make it difficult - like going to central records. Used be able to get a copy of the CD from the tech after any imaging. More are going to a Central REcords 'depot' since I guess the HIPPA laws have scared facilities. You just have to fill out their forms and wait. Sometimes hospitals want to charge for complete records of a 5 day surgical stay but usually not much.

• What are the reasons you've found it helpful to have your own copies of your medical records?
My docs are at several facilities, but I would have kept them anyway. Invaluable when you want a 2nd opinion or a doc retires or a doc changes facilities and her records stay with the previous facility. You can't imaging how many docs have said they wished other patients would come in with relevant records.

• Do you use patient portals and/or third party medical records platforms .. Yes and they are fantastic. Some of mine don't talk to each other, but I love getting test results right away. I particularly love being able to send a message to various docs w/o calling & going through a nurse and then waiting for a call back.

• Do you have any tips on getting, organizing, or saving your own copies of personal medical records? I have a file for each doc. Before I go to an appointment, I make a list of my questions in an excel or word file. I jot answers on my sheet. Next time, I just have to update the questions for that doc & print a new sheet. I print out my blood test results and have made my own spread sheets to track the changes. I keep copies of those and imaging reports in another file called "tests", since various docs always want something. And I have CD's of the actual pictures from any imaging that was done in a file cabinet.

"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?"

My ob/gyn lost some of my records, but other than that, no, I have not had problems.

"What are the reasons you've found it helpful to have your own copies of your medical records?"

To keep track of my health, for reference if necessary, documentation of disabilities, and ease of transfer to future medical providers.

"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?"

Yes, extensively. I think they are great. I can easily check my test results, appointments, orders, request refills on medication and communicate with my doctors. I don't see any cons to them.

"Do you have any tips on getting, organizing, or saving your own copies of personal medical records?"

I keep my cancer related records in a seperate folder from my other medical records.

hi all,

I've had my port for a month now. Have had it accessed 3 times since. Never have any excruciating pain just uncomfortable at times and sore here and there. I sometimes forget that its there. I feel it from time to time when I twist or strain my neck from here or there. I also have this string or thread like piece coming out of the incision in my neck. Is that normal?? I feel like I should be able to cut this off but then it'll be an open wound.

Other than this just get itchy at the incision sites and on the port itself. Mine seems to stick out exponentially because I am rather very thin.

Anyone??

I think having a copy of reports and scans is very important, especially at the beginning when seeking second opinions and feeling rushed and stressed. It saves a lot of time! I did not have trouble but I did have to go in person a couple of times and wait around. Wish I had organizational ideas but mine ended up in a huge pile that I stored and lugged around in a tote bag. Perhaps psychologically I was not ready to admit is was really happening!

I do appreciate my patient portals but my radiologist has one, my surgeon has another and my MO has a third. So not as useful as having hard copies you can keep all together.

My only tip is to start a document which lists your doctors, tests, and appointment dates on one page so you can easily carry it in your purse. I also have a one-pager that lists all the medicines and supplements I am taking. This is helpful since once you're in the medical system you are REALLY in it! Suddenly I had an osteoporosis doctor, a new obgyn, a genetic counselor, etc. and they all asked the same questions at every check-in.

Thanks mods!

Karen - made me smile. I still have all my mammogram actual "films" going back to 1975, when they started testing me fairly young & every couple of years due to dense breasts. After I was diagnosed in 2011 & had BMX, I thought about tossing them but still haven't done it.

• 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.

• 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?

Funny you should ask!

I have never been 'proactive' or organized about medical record keeping. Ever since my diagnosis, I became almost criminally passive, just let things be done to me without challenge or research. But an experience in the past couple weeks has showed me how critical it is to take charge of your own records at least!

I reluctantly finally scheduled revision surgery when my reconstruction resulted in a severe case of capsular contracture, and was ticking off from my pre-surgical To Do List. I only found out when I called to confirm my appointment for the medical clearance required by the hospital that my Medical Oncologist for the past five years, who also became my GP, abruptly stopped seeing patients. He had sold his practice to another group a month prior, but had yet to inform his patients.

While this 'final straw' gave me the excuse I needed to sign on with a different provider, in the short run this left me with the problem of obtaining the certification without a primary care doctor.

This proved more difficult than it sounded. I obtained a list of preferred local practices from my insurance, and made an appointment with one. However, they were unwilling to certify anything without my medical records, even suggesting I put off my surgery until such time as I could obtain them.

I wondered in passing how this would work. An old-fashioned doctor, all patient files were hand-written and unintelligible even to him. I had private doubts whether even a FAX might be beyond him. Calls to the two numbers I had for him brought me to a generic call center that had never heard of him. I came home from work that week a bit frantic. Fortunately, my husband, the doctor's patient for the last 12 years, had additional numbers for him, and one yielded the doctor at home.

• No, he did not have my records. They were with the new group taking over his practice.
• No, they could not be reached: they were in the process of rehabbing the office.
• No, he could not give me the doctors' direct numbers, these were private.
• No, the records were probably not accessible anyway, they were being sent to be scanned and digitized.
• No, he could not see me one last time for this certification even if I came out to his home in another borough.

The doctor finally consented to call one of these private numbers himself and explain my dilemma.

After days of anxiety, I finally found a doctor who agreed to certify me base upon the patient records he was able to access from my many other providers who are part of the 21st century. It seems that there are programs available to doctors that can access records from diverse electronic systems. My surgery went ahead a few days ago.

So, your questions are especially pertinent to me. I salute other responders who have tackled this issue with varying success. The perceived complexity of the effort makes me fold instantly like the failure I am! Sounds like a solution for folks like me may be on the horizon!

I posted a concern to mods re: privacy of records one shares with Ciitizen, the company BC.org is affiliated with. The mods reply was that 'researchers' [not defined] can pay a fee to access the health records you gave Ciitizen permission to collect. I do no believe that corporate funders of Ciitizen are third parties, thus they too have access. IMHO is sure looks like one's health records are being sold for a 'fee'. Doesn't that seem a bit scary? Sorry BC.org, does that look transparent?

I did read the story of why they started Ciitizen. The web cite states "Ciitizen was founded by Anil Sethi in honor of his sister Tania, who died of metastatic breast cancer in 2017" . The web cite also lists breastcancer.org equally with Ciitizen.

What part is not accurate? Does Ciitizen and BCOrg (partners) get paid by a researcher for a person's medical data (if the agree box is checked). Further, I refer back to Lumpie's comments re: the ubiquitous hacking of data; and having all of one's medical data in one place it is just a matter of time before that data gets compromised. Sadly, when big money is at stake and there is one company who owns peoples 'clinical, genomic and imaging data' in one place the consequences for individuals privacy is jeopardized.

Clearly, individuals should have this option if they choose. Providing clear and transparent information prior to that approval is essential now that BC.org is asking for participants on this site to provide a sellable commodity.