Exciting changes have been proposed by the Office of the National Coordinator of Health IT (ONC) and the Centers for Medicare & Medicaid Services (CMS) that remove “information blocking” and increase patient access to medical information.
As a 21-year-old patient, I am often frustrated by the healthcare system that still uses archaic technology. These proposed rules, if they are passed, require that health information technology, such as electronic medical records (EMRs), and the doctors who use them would have to share medical information with patients using modern technology and to share it with patients on the apps that they choose. There are many reasons that patients need access to their medical records.
To give some background, I was very active as a child and was a competitive gymnast and cheerleader. When I was 10, I started having a bunch of symptoms that didn’t seem related, such as rashes, GI issues, strep throat, broken bones, extreme fatigue and weakness. My pediatrician wasn’t able to see all of my other visits, such as urgent care centers, emergency rooms, and specialists, and this lack of information contributed to my diagnosis being missed for 457 days. My parents also didn’t have access to my medical records, and when they did request them, they were charged up to $1 a page for thousands of pages that took many forms and phone calls to get.
By the time I was diagnosed with juvenile dermatomyositis at age 11, I could no longer stand up off the floor on my own or walk up the stairs. After almost 10 years of treatment later, I now see 12 doctors across six health systems, take 21 pills a day, and get admitted to the hospital once a month for two infusions, all while trying to be a full-time college student.
My medical records are stored in silos at different doctors’ offices, hospitals, labs and surgery centers. I have 23 different patient portals that all have different versions of my information, all of which are often outdated or incomplete. Only one of them lets me see the office visits from my doctor’s appointments.
Not only do I not have access to my information, but my doctors are often missing critical information they need to treat me. The burden falls on me, the patient, to try to keep up with all of this information and share it with them, when in reality I am the only one in these situations, out of all my doctors and nurses, who is not being paid to help keep track of everything. You can imagine that, as a 21-year-old, I would much prefer if I could just have an app on my phone that updated from all of my doctor’s electronic records and that allowed me to use my records and share them.
Here are a few examples about why having my medical information is important and how having this information helped me in getting the care I needed:
When I went to college 7 hours from home, I had to start getting my IVIG infusions at a new hospital. As I had gotten reactions that caused me to get aseptic meningitis three times, my doctors and I had worked hard to find a protocol that let me get the medication without getting meningitis. When I got to the new hospital, I was so happy I had a copy saved on my phone that I could share because they didn’t have access to it without me bringing it with me.
My disease is very rare, and I often need to see superspecialists and sometimes need to consider being in clinical trials. Before I can even get an appointment for these places, they need a complete copy of my entire medical history. This is so insanely difficult to do. I have to go doctor by doctor and request a copy of the records.
Another issue is that I have found a lot of errors in my medical records once I have been able to see them. I feel that being able to easily see what the doctors are seeing will provide a much safer environment. And allowing me to share the information with my other doctors and caregivers, it is much less likely that an error is made due to missing or wrong information.
At each visit, I am asked to share my current problem list, medications and allergies, and they want to know what all has happened since I last saw them. If I had easy access to my records, this would be much easier to share. I would prefer it electronically in an app on my phone to make this easier. Because I see 12 different doctors, this information is always changing, and it is very difficult to keep up with.
In addition, it is really difficult to remember all of the discussions and changes that happen in an appointment with the doctor. They place a lot of orders, change medications and ask me to track certain information at home. If the notes were easier to access, and especially if the information could update my to-do list, I would be much more likely to remember the information. I need my records to help me make sure I can do all of the things my doctor and I discussed.
My doctors and hospitals seem to think the patient portals solve this issue, but with 23 patient portals with different information from different slices in time and almost all of them missing the appointment notes and radiology reports, the problem is not solved today. Also, there is far too much faxing still happening. Most of my college friends don’t even know how to fax. I only know this because it is the main way I can request my medical records and can communicate with my doctors.
I urge HHS to finalize the proposed rules, and I ask those who are fighting it to stop fighting and give patients like me access to our information. I look forward to the day that I can easily get my health information to flow automatically into an app of my choice.
Call to Action: Case managers play an integral role in educating and empowering patients to be active participants in their health and healthcare, giving patients access to their information to help your efforts. On March 9, 2020, HHS, CMS and ONC announced that they finalized Rules to Provide Patients More Control of Their Health Data. Case managers should read these rules and work with their organizations to implement them into practice. Case managers will be vital to helping patients and caregivers understand records and answer questions that may arise. To learn more, visit these organizations:
For more information on the ONC final rule, please visit: https://healthit.gov/curesrule.
For more information on the CMS final rule, please visit: https://www.cms.gov/newsroom/fact-sheets/interoperability-and-patient-access-fact-sheet.
To view the CMS final rule, please visit: https://www.cms.gov/Regulations-and-Guidance/Guidance/Interoperability/index.
To view the ONC final rule, please visit: https://healthit.gov/curesrule.