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Topic: Questions about your medical records, need your feedback

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

Research proposals and/or requests posted here by members have been reviewed and approved by the Moderator Team, but not associated with Breastcancer.org.

Posted on: Jan 13, 2020 11:58AM - edited Feb 20, 2020 01:04PM by Moderators

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
NOTE: Only available to those living in the US
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Feb 18, 2020 08:11PM wrenn wrote:

Is 'Citizen' only available to the American members of the community?

Metaplastic IDC Triple negative...Tumour is 1.5cm. BMX Aug. 16th. Chemo cancelled after one dose due to complications. Dx 7/25/2013, IDC, Left, 1cm, Stage IA, Grade 3, 0/6 nodes, ER-/PR-, HER2- Surgery 8/16/2013 Lymph node removal: Left, Sentinel, Underarm/Axillary; Mastectomy: Left, Right
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Feb 20, 2020 12:39PM Moderators wrote:

Wrenn, yes, unfortunately at this time.


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Feb 22, 2020 11:44AM LoveFromPhilly wrote:

I am using Ciitizen and so far it’s been really easy and very helpful. What I get to see in my online records is just a smidgeon of what is actually in my medical charts. I feel that this service will come in handy for me as I wander the roads of MBC.

Also, I was able to give access to my mom, my caregiver, in case I need her help.

As far as my info being used for research, I am incredibly thrilled at the possibility that my data could potentially save someone else’s life down the road!

💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ 💫 🧚🏽‍♂️ 💫 🧚🏽‍♂️ 💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ Dx 3/25/2017, IDC, Right, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- (IHC) Hormonal Therapy 4/5/2017 Femara (letrozole) Targeted Therapy Ibrance (palbociclib)
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Feb 22, 2020 11:57AM farmerlucy wrote:

I’m using Ciitizen too. It is quite interesting. I learned a lot about my health I never knew. Also there is quite a variety of methods providers are delivering the info. Some do piece by piece which is easy, another sent a PDF with over three hundred pages. Still waiting for my main hospital to deliver documents. Thanks for this opportunity.

Dx at 51 after a preventive mx that wasn't. Oncotype dx 3. 3D tattoos from Vinnie! PTSD?? You are not alone! Surgery 2/21/2012 Prophylactic mastectomy; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement Dx 2/24/2012, IDC, Right, 1cm, Stage IA, Grade 2, 0/1 nodes, ER+/PR+, HER2- (FISH) Surgery 3/11/2012 Lymph node removal: Sentinel Surgery 7/22/2012 Reconstruction (left): Silicone implant; Reconstruction (right): Silicone implant Hormonal Therapy 4/10/2013 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone) Surgery 4/14/2015 Prophylactic ovary removal
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Feb 22, 2020 12:05PM Moderators wrote:

LovefromPhilly and farmerlucy,

Thank you for your constructive feedback!

If others who have tried Ciitizen would like to chime in with their experiences, we'd love to hear it!

Thanks in advance,

--The Mods

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Feb 22, 2020 01:17PM LoveFromPhilly wrote:

I haven’t even begun to look at the records yet because I feel like I need to sit down with at least an hour of free time and a cuppa tea to be able to process everything I will learn

💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ 💫 🧚🏽‍♂️ 💫 🧚🏽‍♂️ 💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ 💫 🧚🏾‍♀️ Dx 3/25/2017, IDC, Right, Stage IV, metastasized to bone, Grade 3, ER+/PR+, HER2- (IHC) Hormonal Therapy 4/5/2017 Femara (letrozole) Targeted Therapy Ibrance (palbociclib)

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