Britta Bloomquist is a patient activist and member of the PFCCpartners National HIT Patient and Family Advisory Council (PFAC), which focuses on patient portals and electronic medical records as an impartial group of patients and families who are committed to improving the ability of technology to support the patient-physician relationship.
How did you first learn about OpenNotes?
About 2 years ago, I met Liz Salmi who works for OpenNotes, and that was my first exposure to the larger conversation. I had been reading my notes years before that; I just didn’t know there was any movement building around that practice.
When did you start reading your notes?
When I was in high school, around 16 years old, I was traveling 3 hours for appointments, and after each appointment, I got my whole visit note in the mail from that doctor. Sometimes it was one page, sometimes three pages. I was a very active patient at a young age. I would three-hole-punch the notes and keep them in a binder. It was really helpful to be able to track my progress so closely and know that I was on the same page as my doctor.
There was a gap for about three or four years where I didn’t have access to my notes, and I have chronic health conditions so I really wanted to have them. I figured out a work-around. At every appointment I would log into my portal and request my medical records, and they would mail them to me. And then five or six years ago my current hospital put notes into the portal, so I could read my doctors’ notes online, which is much easier and quicker. So, I’ve been reading my notes for about 15 years now.
What have been the benefits and challenges of reading your notes?
In terms of challenges, there has been some inaccurate information. Nothing life-threatening so far, but there have been some major points that needed to be changed, and there’s not an easy way to change things.
But I’m a more engaged patient because I read my notes. Some specialists I only see once a year, so I review past notes a week before my appointment to review and think about what I need to talk about. The notes are almost my life’s health encyclopedia. They are so helpful to reference and to see things I forgot that happened or were said, and that keeps me on the same page with my doctors.
How has your patient portal helped and/or hindered your ability to access and utilize your information?
It has helped for the most part because it’s a central place for me to go and find my information (notes, test results) within two days to a week after my appointment, so it’s a good tool for me.
The downfall is that portals don’t talk to each other. For example, one of my former hospitals two hours away uses Epic and so does my home hospital. When I needed additional testing at home, they would print off the notes, and I had to scan them and email them to my other providers. It was a lot of legwork for me. It seems like portals, especially those built on the same electronic health record vendor, should be able to share information.
My current portal has changed a lot over the years. In some ways it has become easier, but in other ways it’s more difficult. Sometimes things are renamed and moved without warning, so it takes me a while to track down the information I need.
But it is easier to find my notes. When I log in, I can see a reminder that my notes are available so that they are easy to find. Every health system should have something like that in place.
What do you wish your health system knew about your experience with your patient portal?
I want them to understand that the patient portal should have the same accessibility for patients as providers. We should be able to pull up actual images of x-rays, for example. I have a lot of CDs of images at my house because sometimes you need more than just the report. Patients should have the same tools as providers. And the portal should be designed to facilitate communication and learning between patient and provider. I’d love to be able to comment on my notes and see my providers’ responses. The patient is too often at the periphery of the medical record, but our concerns and activities should be at the center.
Also, a lot of providers don’t know what the patient portal looks like or even how to use it. If providers knew what the patient portal was like, I think it would help them explain it to the patients and encourage people to use it. I recently taught my rheumatologist how to find labs on the patient portal. The more doctors can understand how things are being communicated with patients, the better they will be able to improve that communication.
What do you wish your electronic health record vendor knew about your experience with your patient portal?
I think they should survey patients who use their portals and then act on that feedback. It’s important to talk to consumers more when building and updating, and by that I mean patients, not just the health systems that purchase the software. Difficult navigation or clunky functionality is a huge issue for many patients.
What can patients do if they are struggling to navigate their patient portal?
They can ask me for help, or other patients around them! But they should be able to ask their doctors or hospital administrators for help accessing and navigating their portals and their medical records. When we surveyed other patients about patient portals, I was surprised to find that I had a lot of friends who didn’t know what a patient portal was, and they have the same hospital as me. If you are a patient who is aware and engaged, find ways to connect to other patients, maybe through your health system’s PFAC. We have to help each other and make sure that we all know our rights and are empowered to access and understand our own information.
What is the next step for improving transparency with patients?
I want health systems to push for OurNotes. I know it’s new and is just being piloted right now at a few places, but this is a really important step forward. Patients should be able to contribute to the note along with their providers. I think that could go a long way to improving communication and trust between patients and their doctors. And the other thing I’d really like to see are OpenNotes reporting tools, where patients can notify clinicians when they see errors, so that we can fix errors in our records quickly and effectively. I know that has been piloted with great success at Boston Children’s Hospital and Beth Israel Deaconess Medical Center, and I hope that other places will find ways to implement similar systems. As I mentioned, thankfully, none of the mistakes I’ve found in my record have been life-threatening. Sometimes providers make mistakes. We’re all human! We just need to be able to make adjustments efficiently when that happens.