Betsy is a full-time mom of three children—ages 14, 11, and 9. Two of her children receive care at Boston Children’s Hospital and see two specialists regularly for chronic conditions as well as other specialists as needed. She prefers not to elaborate further on her children’s health out of respect for their privacy.
Betsy began serving as a Patient and Family Advisor at Beth Israel Deaconess Medical Center (BIDMC) in 2010. Since then, she has volunteered with numerous committees and workshops involving patients and families in Boston and currently sits on the Neonatal Intensive Care Unit (NICU) Patient and Family Advisory Council, and the PatientSite Governance Committee at BIDMC. We sat down with her to learn more about her experience with accessing visit notes as a part of her children’s care.
How has having access to open notes changed things for you and your family?
For me, attending medical appointments with my children feels a bit like traveling to a foreign country. In that regard, the language is often unfamiliar to me. The customs and the culture of how things operate can be unfamiliar. And yet, I’m extremely curious, and I’m really eager to learn. Using OpenNotes and having access to those notes has allowed me to feel more confident in how I advocate for my children. I also feel, and truly believe, that we are better prepared for our appointments and make better use of our time with the doctors. And finally, I know that I am educating my children about their health. Accessing my children’s notes has fundamentally changed the way that we navigate the health care system in our family. It has been the biggest game changer, and I can’t imagine going back to not having access to those notes.
Can you provide specific examples about what has improved with access to notes?
One thing is appointment preparation, meaning that I sit down ahead of an appointment and re-read our most recent notes. However, more specifically, I read them with my daughter. In the last few years, I’ve taken that opportunity to sit with her and re-read her notes together. We talk about her questions and her goals for the appointment. It has introduced an opportunity to discuss health and wellness. Of all of the things that I understand about OpenNotes – safety, and collaboration and transparency – building a better relationship with my children is not something I ever thought would come out of using them. Just last month, my daughter had a follow-up appointment. Before the appointment, we went over her questions. We discussed her plan of care. We talked about the goals she felt she had met and her goals for the future. Seeing her take ownership of her own health care has been really exciting.
Another example is how we can collaborate with our providers. Our pediatrician does not share notes, but our specialists do. As a result, I almost see myself as a bridge-builder. When we are at the pediatrician’s office, I will often share the notes from our specialist(s) to make sure that my pediatrician and I have the same information and that we are all working together. It is probably an unnecessary step because my pediatrician has access to the specialists’ portals, but it makes me feel more comfortable knowing that we’ve talked about what changes have been made specifically around medication. I can access OpenNotes right there in the appointment with our specialists, and we can talk through my concerns and questions. Over time, it has saved a lot of time and energy on my part, and probably on my pediatrician’s part too.
How does reading notes about your children’s health care differ between your adolescent daughter and your younger sons?
Note sharing, reviewing information together, and having in-depth discussions about them, occur regularly with my oldest. However, I find I tend to access my youngest child’s notes more frequently to help manage his health. We have yet to read them together, but he knows I can pull up information on the computer and that I talk a lot with his doctors about that information. With my oldest, it’s more of an equal partnership between us. With my youngest, I see myself as modeling behavior and teaching him to ask questions, state preferences, and to correct things that are not correct. I started engaging my daughter more directly when she was about 12 years old and will do the same thing with her siblings.
Many parents find when their children reach adolescence that they no longer want to discuss or share personal things like health information with their parents. Has this been an issue in your family?
I, actually, have found the opposite to be true, in that access to notes has encouraged a more open conversation about my daughter’s health. My access to her information has not created any issues to date. However, I do offer to step back at various times, allowing her to take the lead. I take her boundaries very seriously, but we have not had any issues over privacy.
Have there been challenges in talking with your teenager about the information in her notes?
I have not had any particular challenges in sharing and talking about her health. Sometimes I translate the information in a way that she can understand more clearly. In one instance, a note captured something incorrectly. I showed her the note, and we discussed her options, but I allowed her to decide what to do. I try to give her the power to speak for herself and refuse to answer on her behalf unless she requests that from me. Reading medical notes that do not necessarily capture a personal relationship or the personal side of you as a patient can be an adjustment. That is why I started reading notes with her, so she was not doing that alone and could ask me questions. Now she understands what notes are and what to expect.
Any last thoughts?
I just want to end with this quote by Robert Frost that I found: “Two roads diverged in a wood and I – I took the one less traveled by, and that has made all the difference.” Sometimes taking a different path can lead us to unexpected places, or unexpected results, if we are willing to break from the pack. Having access to notes, even if it is only with some of our doctors, has taken us down a different path and has provided us with an improved experience we would have otherwise missed.