Consumer Engagement Strategy Workgroup

My HMO has a patient portal where I can access information from my visit by using a drop-down menu by the physician’s name. But not all the HMO’s physicians that I see post information. My PCP does, but specialists don’t, and urgent care doesn’t. So, I have incomplete records.

I am a caregiver for my uncle, who is insulin dependent. I can’t get his prescription refilled through a patient portal. I have tocall the doctor’s office and leave a message, then wait to see if I hear back, then call back. His prescription wasn’t refilled in time and now he’s in the hospital.

They [doctors’ offices] make you go around in circles. If you call to refill a prescription and leave a message, they never get back to you and if you use the patient portal, staff monitoring the portal messages say they have 24-48 hours to read the message and then must wait to talk to the doctor before refilling the prescription. It’s no faster using the portal when it comes to refilling prescriptions.

I called my Mom’s PCP several times requesting a prescription refill. No one called back. When we finally went to the office in person, I realized why. Behind the reception desk were rows upon rows, floor to ceiling, of filing cabinets of paper medical records. Staff was carrying armfuls of patient folders around. They were swamped and buried in mountains of paper. Which led to Mom not getting her medication, becoming ill, and being hospitalized.

Not having images available in the patient portal is really frustrating for me. I get frequent MRIs and X-rays to stay on top of my medical condition. But I can only access the radiologist readings that are filled with medical jargon and difficult to navigate. I have to request the image separately for each location I want it sent for second opinions.

My primary care doctor has most of my medical records. They have a patient portal but ask patients not to use it because it’s confusing, not easy to use, and they are waiting to upgrade to a new one.

I wanted to access medical records from twelve years ago. I was told, Oh, we don’t need to keep your records that long. I didn’t know that. So now there’s no way for me to access the historical records I need.

I have to keep a list of several patient portals, user IDs, and passwords on a Google doc that I share with family members to keep track of all my doctors and medical records….

I have a chronic condition and want to be able to easily get second opinions but it’s not always easy. I have to play telephone tag with the doctor’s office because I can’t access images from the patient portal…

I prefer to have test results and reports available to me as soon as they are available because I found out my doctor didn’t discuss some of the results with me, which was worrying because the test showed I was pre-diabetic, and I didn’t have another appointment scheduled with the doctor.

I was at the hospital emergency room and asked a family member to go to the house and take pictures of pill bottles and text them to me so that the doctors would know what medications the patient was taking.

Requesting medical records brings everyone dealing with a catastrophic diagnosis to their knees. It shouldn't be this complicated...