Patient Stories

People across the country are requesting their health data and documenting their experiences. The Tracer reports below illuminate a pathway for improving data access. We thank these individuals for blazing a path for future patients and caregivers.

Common themes range from easy-to-use portals and other bright spots to roadblocks involving fees, forms and funky formats. For an in-depth overview of our results and lessons to date, check out our latest report.

We also invite you to explore these Tracers’ experiences, share your own story, and join the GetMyHealthData movement to make it easier for people to get and use their own health data.

Stuck with the Bill

Stuck with the Bill

"The doctor charged the following for copies of my mom's medical records: First 50 pages $0.50 per page Thereafter, $0.25 ...
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Charges Prohibitive

Charges Prohibitive

I never got my records, as I found the charges prohibitive. I don't recall what they were, only that it ...
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Satisfied

Satisfied

I'm in the midst of being tested to figure out what is causing my symptoms. I wanted my chiropractor to ...
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Can't Afford It!

Can’t Afford It!

I had not been asking for records after every visit and test, and my doctor had not been able to ...
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Cluster!

Cluster!

I called to get my data from the original Doctor. I was told to just go online to their web ...
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Records Disappeared

Records Disappeared

I was in a serious automobile accident as a teenager in the mid 1960s with a head injury and brain ...
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2 binders, 6 Discs

2 binders, 6 Discs

“Two binders, 6 discs, 4 patient portals, and still no longitudinal health record.” —B.P. Lake ...
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All My Records

All My Records

Not only does my primary care physician give me access to my medical records online, she also provides for transportation ...
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Access Denied

Access Denied

“I completed a long form to request data from one visit. It was denied because they couldn't find the visit ...
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Ninety Dollars!

Ninety Dollars!

“I have not tried except for one instance where they sent me a BILL for sending my records to my ...
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Handicapped

Handicapped

“I was recently hospitalized and was so frustrated as to how disparate and unavailable my records were for the staff ...
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Top Secret

Top Secret

“Medical providers treat my data as if it were top secret. I understand their concern about revealing my data to ...
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Still Waiting

Still Waiting

I have had various medical problems off and on my entire adult life and due to being an army wife ...
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More Portals

More Portals

“[I have] Vivofit On Trac, GI Monitor, Med Helper, Asthma Tracker, My Fitness Pal, and more patient portals than I ...
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Puzzled

Puzzled

Getting records (lab, etc.) are total responsibility of [the] patient and offices seem puzzled as to the repeated requests. Practices ...
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Keep Me Safe

Keep Me Safe

“I had shoulder surgery [and] I knew I had an adverse event when I couldn’t move half my face following ...
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Please Help

Please Help

“I have been trying to get my records from my former Pain Management [doctor] who moved out of my area ...
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Useless

Useless

“I visited my dermatologist in suburban St. Louis in July. Asked if they had an EMR…they did… said I wanted ...
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Incomplete at Best

Incomplete at Best

I attempted to get my data from my primary care doc in an electronic file sent to my Direct address ...
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Clinical Data Came Quick

Clinical Data Came Quick

“Thanks for this amazing project! At Brigham and Women's hospital in Boston, Mass General Hospital, and Dana-Farber Cancer Institute, I ...
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Help Me Remember

Help Me Remember

“In addition to receiving my overall health summary of problems, meds, allergies, etc., I would find it useful to have ...
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Many Steps

Many Steps

(Request process was not easy). Many steps needed to access the patient portal and get the CCR data. The only ...
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Not At All Easy

Not At All Easy

“(Not at all easy request process). Many different requests, forms, protocols and follow-ups…experience varied with provider. Everyone is in a ...
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It Worked!

It Worked!

It worked! Yes, I got my data. However, when downloading the data it was in xml, and not a human ...
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Can’t Open It

Can’t Open It

Yes, I got my data! But…it came on a disc and my computer no longer has a disc drive so I ...
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Fragmented

Fragmented

I submitted a signed online form requesting:
  1. A printed copy of My Entire Legal Medical Records for my 22-hour ...
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5 Times

5 Times

I had to call 5 times, and tried to go in person and left a follow-up message to get my ...
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Spigots

Spigots

I have asked for access to a Portal for years and years. Recently my doctor’s health system switched to athenahealth ...
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Only Option

Only Option

“I asked the doctor’s office if I could have my blood test results emailed to me. They told me that ...
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Starbucks Required

Starbucks Required

“My attempt to reconcile three patient portals, CMS Blue Button data, and my Blue Cross health profile. Not an ad ...
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Empower Myself

Empower Myself

“I started gathering my data two years ago and virtually no health care providers is ready to provide me my ...
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Very Impressed

Very Impressed

I logged onto our doctor’s patient portal and clicked on the button for records at the top of the screen ...
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Reports in Hand

Reports in Hand

“So far so good @GetMyHealthData! Pathology reports in hand after an in person request. MR's [medical records] next!” —Corrie P ...
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Bah Humbug

Bah Humbug

"Merry Xmas to me? I just paid $148.96 to access a e-copy (PDF) of my medical record."-A. S ...
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