Radio Interview with Pat Rullo

Last week, I was interviewed by Pat Rullo for the Those Radio Kids show. Pat and I met at the Cleveland Clinic Patient Experience Summit, and she previously interviewed me for her Speak Up and Stay Alive radio show. She does great work, so I was excited to speak with her again. She is doing a great show to help kids and teens who have chronic health issues. We spoke a little about my journey, things I have found effective, and advice that I would have for other kids and teens with chronic disease. She is also interested in talking to other young people with chronic disease so let me know if you are interested! Otherwise, don’t be shy. Let me know what you think of the interview and share any tips you might have for others as well.

Here is a picture of Pat and I two years ago at the Cleveland Clinic.



Christiana Care in January

So, I am a little behind on posting. 🙂 I realized that I never posted this page that Christiana Care put up after my talk there in January. I was honored to talk to the award winners at their Excellence Awards ceremony. It was really inspiring to see so many people coming up with creative ideas to make patient care safer, more efficient, cheaper, and less stressful. It is an impressive organization. Here is a link to their story.

Dignity Health Patient Experience Summit

Recently, I was invited to speak on the main stage at the Dignity Health Patient Experience Summit.I met Sandy and Jacob at the Cleveland Clinic in May, and I was excited to get to work with them. I also got to meet Jason from the Beryl Institute after months of twitter conversation. 🙂

It was really great to see how all of their hospitals are embracing the patient experience. I am always inspired to see people trying to make it better for patients, and it makes me hopeful for better healthcare experiences for all patients.

I was so happy that the leaders were willing to take pictures with me and my Cure JM bracelet, and they were nice to learn about Juvenile Myositis and Cure JM.

Here are some of the pictures from the event.IMG_0285





Interview at Community Health Network

I was honored to be interviewed at Community Health Network a few weeks ago, and they were kind enough to share with me the video. The video above is a shortened version of the interview. First, they played my original, “I am a patient and I need to be heard” video, and in the middle, they played my “Why does everything beep?” video.

The full length version can be found here if you want to see the entire thing 🙂

Thank you to the Community Health Network for having me at your event. It was a lot of fun to share my story and to get to meet an organization that is working so hard to deliver a great patient experience. I love your Patients First idea.

Cleveland Clinic Patient Experience Summit

Deidre and I on Stage
Deidre and I on Stage

I have been very busy with the end of school, taking care of my mom who had surgery, and signing up for my first college classes. 🙂 I am just now getting to write about my really cool experience at the Cleveland Clinic Patient Experience Summit that was held in Cleveland in May.

I was extremely excited to be a secret guest speaker on Monday, May 19th at the Patient Experience Summit. It was very hard to not tell anyone before the event. I was very surprised in February when Dr. Merlino from the Cleveland Clinic reached out to me to ask if I would be willing to speak at the conference. He had seen my I am a Patient and I need to be Heard video, and he asked if I would share my experience. A few weeks before the event, I got to “meet” Deidre Mylod by phone. She was the one they picked to do an interview of me, and she made me feel so much more relaxed. It was very nerve wracking for me to learn that I was going to be speaking in front of 2100 people when the most i had ever spoken in front of was the 25 people in my class at school. However, it was also very exciting.

On Saturday, May 17th, we flew to Cleveland. We got to stay in a brand new hotel, the Westin, that is right near the lake. It was nice but they were still working out the quirks considering it was only open for 2 days when we checked in. It was cool to be the first people to stay in the room though. 🙂

On Sunday, we went to the opening events at the Summit. When I went to check in, they had to make me a new badge that didn’t say Speaker since it was still a secret that I was speaking. It was kind of awkward talking to people because I was so young and I know they were probably wondering what I was doing there. The reception was really nice though, and we enjoyed it.

On Monday morning, we had to get up early. I am not a morning person as you might have guessed from my videos, and we met Deidre in person in the Speaker Room. She was just as nice in person as on the phone. When it was time, the conference staff walked us to the front of the HUGE auditorium where I was going to speak. I jumped back a little in shock when I saw how big the room was and how many people were there. I thought my heart was going to beat out of my chest. They had planned for me to come from the audience to ask the CEO panel a question, but there was a problem with the microphone and it took a few tries before I got to ask my question. It was pretty cool to get to ask the CEOs of the Cleveland Clinic, Northshore Long Island Jewish, Baylor, and Intermountain Health a question. 🙂

Then, Deidre and I walked up on the stage. The lights were shining in my face so I couldn’t see past the outlines of the people in the first row which helped my nerves a lot. They were playing my first video when I walked up on the stage, and I had never listened to it after I had recorded it. I hate hearing my own voice, but then again, doesn’t everyone. After the video, Deidre asked me several questions about how i knew so much about being a patient, the ideas I have shared to make it better, people who have helped me, and advice I have for patients. You can watch the video here, but it is kind of hard to hear. I am going to try to add subtitles to it so that it is easier to understand. I have been pretty shy most of my life, but I actually really enjoyed speaking in front of that crowd. It was kind of an adrenaline rush.

The thing I was most unprepared for was all of the people who wanted to talk to me after I spoke. I was not expecting that many people to walk to talk to a teenager. They seemed to really listen to my story, and it inspiring to know that so many doctors want to give patients a better experience.

Overall, I had an amazing time. I got to sit in on sessions for all three days, and it was really great to hear other people talk about how to improve the patient experience. The summit is an amazing conference, and I would highly recommend it. Thank you to the Cleveland Clinic and especially Dr. Merlino and Deidre Mylod for giving me a great opportunity.

Radio Interview

I was so excited to be interviewed for a radio show called Speak up and Stay Alive by Pat Rullo. She asked me questions about what it is like to be a teen patient and about why I made my video. We talked about what makes a good patient experience, and I got to talk about some of the positives of having a chronic disease too. Please listen and let me know what you think! My part starts around 15 mins in.

Shared Decision Making Guest Blog

Shared Decision Making Guest Blog

I was asked to be a guest blogger on the Informed Medical Decisions Foundation blog for Shared Medical Decision Making. They asked me to respond to some questions which they posted here and I am posting here also.

1. What prompted you to become engaged in your health care? Tell us your “ah ha” story.

Even though I am only 15, I have a lot of healthcare experience. I was diagnosed with a rare autoimmune disease called Juvenile Dermatomyositis at the age of 11. Over the years, we have faced many decisions that had to be made about my care. In January of this year, I was hospitalized for meningitis that I developed after getting an IV treatment.  After four days of getting little sleep due to a horrific headache and high dose steroids, I was frustrated by two main things. First, the different med students, residents, attendings, and specialists all came to see me at different times and they started waking me up at 6am and came at staggered intervals all morning which kept me from resting. I believe sleep is critical to healing. Secondly, one of my doctors kept taking my mom into the hall to talk about my care without talking to me first. Even if I can’t make the decision as a 15 year old, I should at least have a say in the discussion. I made a video that got a lot of attention about patient experience. It can be found here.

2. Can you recall a time when you pushed back or challenged your doctor to get the care you needed? What surprised you about that experience?

Last fall, I was recovering from a really rough few months and I had been doing school from home as a hospital/homebound student. One of my doctors said I should go back to school because it would be better socially. I explained that I was exhausted and feel worse when I go to school which means that I don’t feel well enough to do things that I enjoy like riding horses. By the time I get to the barn, I don’t have any energy or I don’t feel well enough to ride. If I do homebound school, I can focus on school but also have some energy left for fun activities. Regardless, I get to see my friends outside of school so going to school isn’t required for social needs. This was surprising to me because it seems that healthcare is not completely focused on the patient’s health and their perferences.

Another example involves the nursing staff. I do not like to get the blood drawn from the IV site when they come to start my IV because I think it hurts worse than getting two sticks that are fast. Also, the blood drawn from my IV is often clotted and has to be redrawn which is usually done at 5am in the morning! When I told one nurse that I didn’t want her to draw the labs, she was very upset and kept trying to assure me that she could get it and that it wouldn’t clot. Later, I heard her in the hall telling my regular nurse that I had REFUSED to let her draw the blood from the IV. I was very surprised because it seemed like a reasonable request that got them better blood samples for the tests they were running and was less pain for me.

3. Some patients are hesitant to become involved in the decision making process. What would you say to empower them to take an active role?

You are the only one who knows your body and your preferences. The only way that you will get the treatment that you need is if you speak up and share your concerns or preferences. If your doctor isn’t willing to work with you, don’t feel like you have to stay. You can always change doctors to get the care you need.

4. Some providers think patients don’t want to be involved in the decision making process. What would you say to change their minds?  

You should always at least ask the patient if they have any questions or concerns. You can’t just assume that people don’t want to have a say in their treatment. I think most of the time people want to have input but are scared or don’t think they can.

5. In an ideal world, what does patient-centered care look like?

In an ideal world, care would be completely focused on the patient, and their needs, wants, and health. Also, when there are financial differences in treatment options, that should be explained. In an ideal world, healthcare would really not look much like it does now. Progress is being made, but it really isn’t close. Many things can be done at home instead of in the hospital, and when you are in the hospital, it should be focused on what is good for the patient and not so much around what is good for the doctor.

I would love to hear your thoughts on shared decision making as well as comments on my thoughts above. Also, please visit the Shared Decision Making blog to read other patient stories such as Ra’Shaun Glass, Jeff Hansen, Christie Aschwanden, as well as other great topics.

Stanford MedX Rare Disease Panel

On February 23rd, I was a guest on the Stanford MedX Rare Disease panel. It was my first google hangout, and it was fun. Other than having a technical issue that prevented me from having a cool name listing like the other panelists, I thought it went well. Because i was under 18, they had my mom participate in the background.

We discussed what it is like to have a rare disease and the challenges with explaining it to others. We talked about the importance of research and connecting with other patients online. It was great to hear other share their stories. There were other patients, a caregiver, a doctor, and a journalist on there as well, and it seemed like we had some common stories to share.

There are over 6,000 rare diseases, and together they affect about 30 million people in the US. When you put them all together, they are not that uncommon, but each individual disease has less than 200,000 people with it in the US. That is the definition of a rare disease. has a lot of information about my rare disease, Juvenile Dermatomyositis. If you are interested, check it out. The more people learn about rare diseases, the more we can have faster diagnoses and better treatments. Cure JM also has a patient community that is great at helping families get information they need.

Another resource we discussed was and the Spoon Theory. If you haven’t heard of it, it is a great explanation of what it is like to have a chronic disease that causes fatigue. Many people don’t understand what it is like to look well on the outside but to feel badly and suffer from fatigue.

Check out the video and let me know what you think!