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Topic: Questions about your medical records, need your feedback

Forum: Survey, Interview and Participant Requests: Need your Help! —

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Posted on: Jan 13, 2020 12:58PM

Moderators wrote:

Hi All,
We are wondering if you could help answer a few questions to help guide some content pieces we are writing.
• 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?
• What are the reasons you've found it helpful to have your own copies of your medical records?• 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?
• Do you have any tips on getting, organizing, or saving your own copies of personal medical records?
We appreciate your insights!
Warmly,
The Mods
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Jan 13, 2020 01:13PM LAstar wrote:

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.

Dx 3/5/2012, DCIS, 6cm+, Stage 0, Grade 3, 0/3 nodes, ER+/PR- Surgery 4/5/2012 Lumpectomy: Left Surgery 5/3/2012 Lumpectomy: Left Surgery 6/18/2012 Mastectomy: Left; Prophylactic mastectomy: Right; Reconstruction (left): SGAP flap/hip flap; Reconstruction (right): SGAP flap/hip flap Surgery 10/4/2012 Reconstruction (left): SGAP flap/hip flap; Reconstruction (right): SGAP flap/hip flap Surgery 1/25/2015 Reconstruction (left): DIEP flap
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Jan 13, 2020 01:25PM Moderators wrote:

Thanks for sharing, LAstar!

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Jan 13, 2020 01:36PM bcincolorado wrote:

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.



Dx 8/2009, IDC, Left, 5cm, Stage IIA, Grade 1, 0/2 nodes, ER+/PR+, HER2- Surgery 1/7/2010 Lumpectomy: Left; Lymph node removal: Left Hormonal Therapy 1/15/2010 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Hormonal Therapy 1/30/2016 Femara (letrozole)
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Jan 13, 2020 01:37PM ScatteredEnergy wrote:

Copying my answer here.

* I have not had issues getting records or CD with images of every procedure I have done.

* Having copies of my records was helpful when I went to get a 2nd opinion from another breast surgeon. I personally like having copies of everything in case I need it in the future and I can no longer get it from the original source or for "memory" keeping.

* I have received medical records in person, like the images since they come in CDs, and the reports via the apps or online. Having online access is easier since I can see the results as soon as they are posted instead of having to wait until I can go in person to pick them up.

* I have attached a pic of the type of folder I use for my records. I use one side for all results, another one for expenses, another one for referrals, another one for letters from insurance and letters from providers, another one for after care instructions, and the one in the beginning has blank lined pages to write notes while I'm seeing a doctor.


Mom of three, two boys 19 and 13, and the princess, 6 years old. Dx 12/9/2019, IDC, Right, 3cm, Stage IIIA, Grade 3, ER+/PR+, HER2- (IHC)
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Jan 13, 2020 01:45PM Moderators wrote:

Thank you ScatteredEnergy and bcincolorado!

Keep them coming!

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Jan 13, 2020 03:21PM Salamandra wrote:

My treatment center seems to let records go offline after a pretty short time (something like 6 months, at least for some of them). I'm sure I could get it back but it would be a longer process.

I also end up with lots of different records from lots of different places (apart from cancer), and it's nearly impossible to keep track of all the sites and logins, or even sometimes to remember where I did what to be able to go find it.

I like to save everything to my google drive so it's at my fingertips, but unfortunately I haven't been so good about being on top of it.

Dx at 39. 1.8cm. Oncotype 9. Dx 9/19/2018, IDC, Right, 1cm, Stage IA, Grade 2, 0/3 nodes, ER+/PR+, HER2- (FISH) Surgery 10/18/2018 Lumpectomy; Lymph node removal: Sentinel Hormonal Therapy 11/1/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Radiation Therapy 12/3/2018 Whole-breast: Breast Hormonal Therapy 12/19/2019 Fareston (toremifene)
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Jan 13, 2020 03:45PM - edited Jan 13, 2020 03:50PM by AliceBastable

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.

Endometrial cancer 2010, basal cell multiples, breast cancer 2018, kidney cancer 2018. Cancer's a bitch, but I'm a bigger one with more practice. Dx 5/2018, ILC/IDC, Left, 2cm, Stage IA, Grade 2, 1/1 nodes, ER+/PR+, HER2- Surgery 7/11/2018 Lumpectomy: Left; Lymph node removal: Sentinel Surgery 8/8/2018 Radiation Therapy 10/29/2018 Whole-breast: Breast, Lymph nodes
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Jan 13, 2020 07:07PM Gussy wrote:

I try and have all of my medial records under one roof. It seems that all if my docs, which there are many, seem to have all information about me. I find this reassuring. If everyone has the same info then there should be good coodination.

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Jan 13, 2020 10:47PM MinusTwo wrote:

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.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jan 14, 2020 03:34PM Moderators wrote:

Bumping, as we'd love to hear from more people.

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Jan 14, 2020 10:30PM WC3 wrote:

"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.


Dx 2018, IDC, Left, 3cm, Grade 3, ER+/PR+, HER2+ (FISH) Chemotherapy 5/31/2018 Carboplatin (Paraplatin), Taxotere (docetaxel) Surgery 11/14/2018 Lymph node removal: Left, Sentinel; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Hormonal Therapy Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Targeted Therapy Perjeta (pertuzumab) Targeted Therapy Herceptin (trastuzumab)
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Jan 15, 2020 05:11AM edj3 wrote:

Have you ever had any problems getting copies of your medical records...Not a problem as much as very inconvenient (had to make a special trip and also pay for the disc with my CT scan on it). I was more annoyed that I had to pay $25 for my RO to complete FMLA paperwork I ended up not needing.

• What are the reasons you've found it helpful to have your own copies of your medical records?
Most of my providers are in the same system so they can all see everything the rest of them did. But my orthopedist (pelvic fracture), dermatologist (melanoma and atypical leiomyomas) and psysiatrist (pelvic fracture) aren't. Their portals are primitive and locked down. I get soft copies of those records.

• Do you use patient portals and/or third party medical records platforms .. Yes! LOVE LOVE LOVE the portal at St. Luke's.

• Do you have any tips on getting, organizing, or saving your own copies of personal medical records? I keep soft copies on my home computer. But I love the binder mentioned above.

Tried the tamoxifen, no thanks. Dx 4/9/2019, DCIS/IDC, Left, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (IHC) Surgery 5/5/2019 Lumpectomy; Lymph node removal: Sentinel Dx 5/6/2019, LCIS, Left, <1cm, 0/1 nodes Radiation Therapy 6/2/2019 Whole-breast: Breast Hormonal Therapy 9/22/2019 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 16, 2020 02:23PM - edited Jan 17, 2020 08:05AM by Moderators

Thanks, Everyone for your feedback.

We want to let you know that Breastcancer.org has partnered with a new resource called Ciitizen that can help make it easier to gather and organize all of your medical records and imaging disks into a secure online profile — for free! To learn more about how to work with Ciitizen (it's very fast and easy), visit www.ciitizen.com/BCO. There, you can also learn about why Ciitizen founder Anil Sethi launched the company after losing his sister to metastatic breast cancer.

Also, to better understand how HIPAA guarantees people access to their health information, listen to our podcast episode featuring Deven McGraw, the chief regulatory officer for Ciitizen, and former U.S. health privacy and security policy as deputy director for health information privacy at the Department of Health and Human Services. Medical Records: Privacy and Access Rights Granted by HIPAA

Please feel free to reach out to us with any questions or feedback.

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Jan 16, 2020 02:46PM Annabelle2 wrote:

Have you ever had any problems getting copies of your medical records...

I was not given a copy of my orignal mammo that missed my cancer (03/2017). I was never given copies of my CT or MRI reports after diagnosis (02/2018). It wasn't until I found out they lied to me about a hole bunch of stuff (05/2018) that I requested all of my records (only minimal information was ever posted online). I had to go back to the records office 3 times to get everything - they kept leaving things out.

• What are the reasons you've found it helpful to have your own copies of your medical records?
It hasn't been helpful for anything specific. But knowing how much they have lied to me, at least now I have my own copy that can't be changed, edited, or lost.

• Do you use patient portals and/or third party medical records platforms ..

My hospital/group of clinics has a patient portal for records, test results (only what they felt I should know), communication, billing, etc.

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

Ask for a hard copy of all tests and information at each and every appointment. Keep them in a binder by date or topic, whatever works best for you. Bring it with you to all appointments. Stay on top of it from the start.

Bring a reliable person with you to each appointment and have them take notes as well.

We started recording appointments on our cell phones so we could keep things straight and make sure we hadn't missed anything. You have to inform them that you're recording the conversation I believe.


Dx 2/9/2018, IDC, Left, 3cm, Stage IIIC, Grade 3, 0/3 nodes, ER+/PR-, HER2- Chemotherapy 3/8/2018 AC + T (Taxol) Surgery 7/17/2018 Lumpectomy: Left Radiation Therapy 8/15/2018 Whole-breast: Breast, Lymph nodes, Chest wall Surgery 1/22/2019
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Jan 18, 2020 03:53AM Erikav16 wrote:

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??

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Jan 18, 2020 08:23AM RatherBeSailing wrote:

At this point I have over fifteen medical providers, and have found that they do not necessarily communicate with one another, so find it vital to keep track myself. Some of my hospital providers provide test results through the portal, others do not.

I download all reports as they post to the portal - blood work, pathology reports, reads on scans, etc. And save them to a file on my computer, renaming them as something that makes sense to me, "Blood Work 9.12.18."

At the end of each year I request a copy of ALL medical records - including clinic notes from doctors and nurses and PAs, blood work results, notes on all radiology procedures. I tell them I want everything. This ends up including doctors' orders for procedures, records of phone calls between me and my providers, etc. The records come on a disc in PDF format, and can be over 1,000 pages.

In my experience, the records come in a mish-mash order and are impossible to sort. You can try using Adobe Acrobat to covert to text, but words get garbled. I take the time to make a log in Miscrosoft Word that lists the Acrobat pages and a rough idea of what's there. Time consuming. But when you need to get records to a new provider you can find them quickly. With Adobe Acrobat Pro, you can create new PDFs from selected pages. Alternately, you can just print out the ages you need for new providers.

I request all radiology images in addition to radiologists reports on scans. I'm always afraid I don't understand the naming system of scans on the CD, so just duplicate the entire CD to give to new doctors. Or they can duplicate the disk and send the original back to you.

My providers also find it helpful at first visit when I send them - along with records - a short timeline of diagnoses, procedures, and a list of other doctors I am seeing. It seems to help them put the notes from other providers in context (why did you have that CT scan? Why were there three echocardiograms in three months?) and also lets them know whom to contact if they need more info. I create a basic timeline that can be sent to any new provider.

Finally, yes, I have had difficulty getting records. And I second Annabelle. Sometimes isolated records are missing and it always seems to be when there is a problem. Other records, I could see, had been edited by providers after I requested my records - have to wonder what was going on there. And makes it clear that providers are - at least at some hospitals - notified when you make the request. So I would advise checking the records once you receive them to make sure they're complete.

One record I had to request five times, even going to the patient advocate twice and threatening to report them for HIPAA violations.

Moderators, thanks for writing the article!

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Jan 18, 2020 08:46AM - edited Jan 18, 2020 08:47AM by Georgia1

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!

Cancer touched my breast so I kicked its ass. Dx 9/3/2017, ILC/IDC, Right, <1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- Dx 10/10/2017, LCIS, Right, 0/1 nodes Surgery 10/10/2017 Lumpectomy; Lymph node removal: Right, Sentinel Radiation Therapy 11/27/2017 Whole-breast: Breast Hormonal Therapy 1/2/2018 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
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Jan 19, 2020 06:31PM karen1956 wrote:

I use the patient portal for all my doctors (too many) and for the lab where I have blood draws. i love having access to my records. When I have any scans I ask for a copies of the report as well as a disk (if possible). I know doctors send reports to each other and to pcp but I want more than a summary. I have all my labs since Dx (going on 14 years) and reports from all my DEXA scans and other imaging. I have a large manilla envelope of records from the hospital. I even have my mammogram films which I'm not sure why I've kept them since I had a bilateral and no mammograms since DX.

I want all more reports and records because I'm in charge of my health. Doctors move, close practices etc.

Karen in Denver, Dx 02/03/2006, ILC, stage IIIa, ER/PR+, HER2-,
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Jan 19, 2020 10:55PM MinusTwo wrote:

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.

2/15/11 BMX-DCIS 2SNB clear-TEs; 9/15/11-410gummies; 3/20/13 recurrance-5.5cm,mets to lymphs, Stage IIIB IDC ER/PRneg,HER2+; TCH/Perjeta/Neulasta x6; ALND 9/24/13 1/18 nodes 4.5cm; AC chemo 10/30/13 x3; herceptin again; Rads Feb2014
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Jan 21, 2020 11:10AM sbelizabeth wrote:

I kept a big old-fashioned binder, with dividers labeled medications, chemo, pathology reports, lab reports, imaging reports, surgery reports, explanation of benefits, bills, office visit notes/questions. I printed out everything and filed it promptly. This binder went everywhere with me. It was extremely helpful to my whole team that I had answers to questions right there in my Viking Chronicles.

I never had problems getting access to my medical records. Keeping my binder probably gave me a sense of control, in a situation in which I felt like things were spinning.

I currently use the patient portal system and I like it, but not every provider is on the same one, and they don't talk to each other. I believe there's liability in having all that medical information online, though. I've been the victim of medical identity theft in the past when a doctor's office employee sold insurance and patient information, and in that situation no internet was involved. It scares me to think how easily it could be accomplished by a smart, dishonest hacker.

pinkribbonandwheels.wordpress.... Dx 10/20/2011, IDC/IBC, Left, 1cm, Stage IIIA, Grade 2, 6/28 nodes, ER+/PR+, HER2- Chemotherapy 12/15/2011 Adriamycin (doxorubicin), Cytoxan (cyclophosphamide), Taxotere (docetaxel) Surgery 4/18/2012 Mastectomy: Left Radiation Therapy 5/21/2012 Breast, Lymph nodes Hormonal Therapy 7/19/2012 Femara (letrozole) Surgery 4/15/2013 Reconstruction (left): DIEP flap; Reconstruction (right): DIEP flap
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Jan 21, 2020 01:33PM Lumpie wrote:

• 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." Dx 2015, DCIS/IDC, Right, 3cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Radiation Therapy Whole-breast: Breast Surgery Lumpectomy: Right Surgery Lumpectomy: Right
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Jan 22, 2020 09:10AM Lumpie wrote:

If you are concerned about privacy when using third party health information sites, Consumer Reports has posted information and a petition regarding consumer privacy when using health related apps.

"We are calling on your company to protect our sensitive information by applying, at a minimum, HIPAA privacy/data security standards to every users' health data. You should commit to:

  • Not selling or sharing any users' personal information;
  • Only collecting data that the app needs to operate, and destroying that data after use;
  • Providing users clear information about what you are doing with our data and why."
You can find it here:

https://action.consumerreports.org/privacy20200122petition?EXTKEY=EA201EP&utm_campaign=20200122_healthapps&utm_medium=email&utm_source=cr


"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." Dx 2015, DCIS/IDC, Right, 3cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Radiation Therapy Whole-breast: Breast Surgery Lumpectomy: Right Surgery Lumpectomy: Right
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Jan 23, 2020 11:33AM Moderators wrote:

Bumping to hear from more people. We really appreciate this feedback!

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Jan 24, 2020 02:45PM Lumpie wrote:

Not Just Google; 'Big Tech' Bets on Medical Records

It's not just Google that's been striking deals around access to patient medical records; Microsoft, IBM, and Amazon have all made agreements with hospitals that allow them to see patient-level data, the Wall Street Journal reported.

Microsoft is working with Providence, a health system in Washington state, to develop cancer algorithms based on doctors' notes in patient charts. Those notes aren't stripped of identifiable patient information, WSJ reported.

IBM and Brigham and Women's Hospital have an artificial intelligence deal that allows the hospital to share personal data for specific requests, though a spokesperson said the hospital hasn't yet done so.

Finally, Fred Hutchinson Cancer Research Center in Seattle gave employees of Amazon Web Services access to health information that identifies patients as part of a project to train software to read medical notes. But an Amazon spokesperson said the partnership hasn't yet used personally identifiable data.

The extent of the access wasn't always known at the time of the deals, WSJ reported.

Google made headlines a few months ago for Project Nightingale, a deal with Ascension health system that gave the tech company access to 50 million patient records. That led to a federal inquiry and criticism from both patients and policymakers who were concerned about privacy.

The deals are evidence of hospitals' "growing influence in the data economy," WSJ reported.

https://www.medpagetoday.com/publichealthpolicy/generalprofessionalissues/84474?xid=nl_badpractice_2020-01-24&eun=g1278169d0r&utm_source=Sailthru&utm_medium=email&utm_campaign=BadPractice_012420&utm_term=NL_Gen_Int_Bad_Practice%20-%20Active

{This recently reported regarding Big Tech and medical records. FYI.}

"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." Dx 2015, DCIS/IDC, Right, 3cm, Stage IIA, Grade 3, 0/1 nodes, ER-/PR-, HER2+ (IHC) Targeted Therapy 1/14/2016 Herceptin (trastuzumab) Chemotherapy 1/14/2016 Cytoxan (cyclophosphamide), Taxotere (docetaxel) Dx 2017, IDC, Stage IV, metastasized to liver, ER-/PR-, HER2+ Radiation Therapy Whole-breast: Breast Surgery Lumpectomy: Right Surgery Lumpectomy: Right
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Jan 27, 2020 11:52AM mortmain wrote:

• 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!Smile Sounds like a solution for folks like me may be on the horizon!

Dx 6/16/2014, DCIS/IDC, Right, <1cm, 0/2 nodes, ER+/PR+, HER2- Surgery 7/17/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Radiation Therapy 8/20/2014 Breast, Lymph nodes Hormonal Therapy 2/2/2015 Arimidex (anastrozole) Hormonal Therapy 6/16/2016 Femara (letrozole) Surgery 3/2/2018 Reconstruction (left): Silicone implant; Reconstruction (right): Latissimus dorsi flap, Silicone implant Surgery 8/10/2018 Reconstruction (right): Fat grafting, Silicone implant Surgery 1/22/2020 Reconstruction (right)
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Jan 28, 2020 04:16AM - edited Jan 28, 2020 04:17AM by hikingandhorses

I read the moderator post about a new 3rd party service offering to organize medical information for free - in this day and age of cyber security, I would never feel comfortable with that. It's bad enough trying to manage security with all of the players in my medical treatment.

I set up a binder and had a section for diagnosis, information I researched and wanted to ask questions of my medical team, procedures and finally billing - this was complicated in and of itself ...having to match procedure dates with invoices and EOBs. I found twice where the insurance company went back and "revisited" a completed EOB and recalculated what they would pay for the procedure .... which, in turn, changed how my physician billed it. I ended up setting up a spreadsheet in excel for all of this. It made it easy to find procedure dates to match up records and to determine which bills were still outstanding.

I also never had problems getting copies of procedures - all it took was asking and signing releases.

Dx 3/21/2014, IDC, <1cm, Stage IA, Grade 3, 0/1 nodes, ER+/PR-, HER2+ Surgery 5/7/2014 Lumpectomy: Right; Lymph node removal: Right, Sentinel Chemotherapy 6/23/2014 Carboplatin (Paraplatin), Taxotere (docetaxel) Targeted Therapy 6/23/2014 Herceptin (trastuzumab) Radiation Therapy 10/29/2014 3DCRT: Breast Hormonal Therapy 1/10/2015 Aromasin (exemestane) Hormonal Therapy 3/10/2015 Femara (letrozole)

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