Tracer 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.

longRecordOnCds

2 binders, 6 Discs

“Two binders, 6 discs, 4 patient portals, and still no longitudinal health record.” —B.P. Lake ... Read More
brightSpot

All My Records

“Not only does my primary care physician give me access to my medical records online, she also provides for transportation ... Read More
requestIfTeyAskCorrectly

Access Denied

“I completed a long form to request data from one visit. It was denied because they couldn't find the visit ... Read More
Art by Regina Holliday

Ninety Dollars!

“I have not tried except for one instance where they sent me a BILL for sending my records to my ... Read More
Art by Regina Holliday

Handicapped

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

Top Secret

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

Still Waiting

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

More Portals

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

Puzzled

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

Keep Me Safe

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

Please Help

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

Useless

“I visited my dermatologist in suburban St. Louis in July. Asked if they had an EMR…they did… said I wanted ... Read More
dazedConfused

Incomplete at Best

“I attempted to get my data from my primary care doc in an electronic file sent to my Direct address ... Read More
stevenKeatingBrainscan

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 ... Read More
formatMatters

Help Me Remember

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

Many Steps

“(Request process was not easy). Many steps needed to access the patient portal and get the CCR data. The only ... Read More
novantHealthRecordRequest

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 ... Read More
brightSpot

It Worked!

“It worked! Yes, I got my data. However, when downloading the data it was in xml, and not a human ... Read More
cbCdromAnonymized

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 ... Read More
formatMatters

Fragmented

What data did you request? I submitted a Vocatus signed online form requesting:
  1. A printed copy of My Entire ... Read More
dazedConfused

5 Times

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

Spigots

“I have asked for access to a Portal for years and years. Recently my doctor’s health system switched to athenahealth ... Read More
ironMountainRedacted

Only Option

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

Starbucks Required

“My attempt to reconcile three patient portals, CMS Blue Button data, and my Blue Cross health profile. Not an ad ... Read More
Art by Regina Holliday

Empower Myself

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

Very Impressed

“I logged onto our doctor’s patient portal and clicked on the button for records at the top of the screen ... Read More
corrie

Reports in Hand

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

Bah Humbug

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

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, ... Read More
Show Me the Money

Charges Prohibitive

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