Over the past year, I have received healthcare from doctors and professionals who use five different online reporting systems or medical portals for their patients. Getting blood work from one lab goes into System A and a different lab goes to System B. To retrieve messages, test results, and reminders, I have to remember log-ins and passwords for all of these systems. This makes it difficult for me, the patient, to compare results about my own health procedures so I can ask informed questions. It also makes it easier to miss important data that is stored in different places.
Once upon a time, patients relied on The Doctor to share whatever information he or she felt the patient needed to know. Usually, when I was younger, it was he. As a young mother of kids ages three and 10 months, I had one doctor I relied on for medical information, my gynecologist. I had gone for my regularly scheduled exam and he said nothing to me about my health, so I assumed all was well. I was using an IUD for birth control which he recommended. No information or precautions were offered. A few weeks after my check up, I was in the hospital with an ectopic pregnancy.
After having dinner with friends that included a dessert called tunnel of fudge chocolate cake, I came home suffering from severe cramps. Assuming my gluttony was the cause, I took Pepto and waited for the pain to subside. With two very young kids, I was not eager to go to the ER. By the time I did go, I was in so much pain that I don’t even remember who watched my kids. I was lucky to come out of that experience healthy, despite losing an ovary and fallopian tube and spending a week in the hospital.
I’m not blaming The Doctor for missing the fact that I had an ectopic pregnancy, but here’s the thing. He knew something was not right when he examined me just prior to the incident but assumed it was a cyst. As he explained, most cysts go away by themselves so he didn’t bother to mention this finding since he hated to worry “my women.” Well, it was my body and I had the right to know something was not normal. I certainly would have gone to the ER much sooner. By the time I got there, my tube was close to rupturing. Needless to say, I changed doctors.
Now that patients have more rights regarding information about their own health, there is a new problem accessing that information online. Patient portals are a great idea. They are secure online websites that allow me to see my personal health information 24/7, no matter where I am. I can receive messages from my doctors, test results, discharge summaries, and reminders of appointments. But to get all of my information, I have to remember a log-in and password for many different systems and my health records appear in bits and pieces depending on which system my doctor uses.
In my area, a lot of doctors use Northshore Connect. That can be helpful in comparing many of my test results and a good portion of my lab work. Except that my internist uses something called Practice Fusion, and none of that information appears on Northshore Connect. When I go to the excellent Northwestern Urgent Care in my neighborhood, or if I use doctors or hospitals affiliated with Northwestern or the University of Chicago, the portal is MyChart. For Illinois Bone and Joint it’s My IBJI. Most of us receive our vaccines at Walgreen’s or Osco these days, but that information never seems to make it onto any of my portals. Thus, Northshore Connect keeps telling me I am years past due for flu, pneumonia, and shingles vaccines, even though I had all of them this year.
I’m pretty sure doctors can access information from some of these different portals, but not all. Since medical care has become more specialized, critical data that would inform treatment may be lost. I’m pretty sure the drug stores don’t share records of inoculations even though they always ask for my internist’s name and phone number. If I see a specialist, which is often the case for health issues beyond routine physical exams, that information doesn’t always make its way back to the doctor who made the referral.
There must be a way for all of these medical portals to connect. I’m willing to take responsibility for monitoring my healthcare, but I need to see all of my information in one place to be sure I understand what is happening to my own body and what questions I should be asking.