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.

Crowdfunding a Solution to the Beeping?

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Every since my mom showed me the Intelligent Hospital display at HIMSS, I have been trying to think of how I could get that Vocera thing into my hospital. If you don’t know what Vocera does, it is a device that nurses wear around their neck, and it allows direct communication to the right person. For example, my infusions of IVIG is very thick so the IV beeps a LOT. Instead of it beeping to me in my room, it could beep straight tot he nurse who could either answer it herself or ask another nurse to look into it with a push of a single button. This means that I would get response without the normal way it is today.

In case you haven’t been in the hospital, this is how it works – at least at my hospital.

Beep, Beep. Beep – the IV beeps to say that it has a problem
I push the Nurse call button on the remote.
My mom gets up and pushes the silence button on the IV pump.
The attendant (not really sure who this person is but it isn’t my nurse) says, “Can I help you?”
I say, “my IV is beeping.” Sometimes they can’t hear me and we have to do this part a few times.
My mom keeps pushing silence every 2 minutes – sometimes the nurse comes quickly but other times it can be 10 minutes or more depending on what they are doing.
The nurse comes in and messes with the machine and it is happy.
She turns of the call light.

Sometimes, this can happen 5 or 6 times in an hour, and sometimes it doesn’t happen at all. I would guess that it happens at least 25 times in 24 hours – maybe more. It also happens when each infusion is completed. So, they hang one med and when it is finished, it beeps, They hang another, and when it finishes it beeps.

So, I learned about this Vocera device and it sounds heavenly. I spoke to them,and it is pretty expensive to get for my hospital, but I was thinking about trying to do a crowdfunding campaign to buy it for my hospital. What do you think? Do you think I could raise $25,000? Would you be willing to help find people to donate or donate yourself? Should I make tshirts and sell them or something? What ideas do you have?

Lab Draws at the Hospital

Do lab draws really need to be done so early? My mom was in the hospital last week, and the guy came to draw her blood at 6am each day. The first few days, the guy would knock once and then turn on the full lights in the room. I mean bright lights. One day, my mom was startled when the lights came on and said “turn out the lights.” The guy said something like “I think you want me to be able to see when I stick a needle in your arm.” A new guy came the last few days and he was much nicer about the lights. He turned them on but he tried to give my mom warning first. My mom was talking to him about how early it is, and he said that he starts at 4am waking people up to get labs. He said that it is his least favorite part of his job. He likes the rest but he doesn’t like waking people up.

He said that he has to come so early because some doctors want the results by 7am rounds. But, my mom’s doctor never came in before 3pm each day. He wasn’t reviewing the results until he came in the room either because he looked them up in the room.

So, my question is, could there be a different way? Is it necessary? Could only the critical ones be done so early? Or maybe only the ones who have a doctor who comes early? Any other ideas?

Food at the Hospital

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My mom was in the hospital last week, and I was really surprised by the way that they served food to her. At my hospital, they let me pick what I want to eat and when I want to eat it. I think the hours are 6 in the morning until 11pm. I don’t feel well a lot of the time that I am there, so it is really nice that they let me order what sounds good to me at that moment and to order when I feel like eating. 

My mom had food delivered at 7am, 11:30am, and 5:30pm. Seriously, who eats dinner at 5:30 at night? And I would miss almost every meal if they brought it to me at 7 and lunch at 11:30. When I don’t feel well, i try to sleep as much as possible and don’t want to eat in the morning. 

My mom could ask for things like pudding, jello, and chicken broth from her nurses. She wasn’t really able to eat much when she was there anyway, but I couldn’t help thinking about the people who are hungry and don’t have the choice. Also, when the did ask what she wanted, they asked her the day before. When you are sick, how do you know what you will feel like eating the next day?

As you know, I think sleep is really important to getting well. I also think eating is important to getting well. My mom posted about this on twitter and it seems some other places are like my hospital but that a lot are still like this one.

What are your experiences? Do you think it is important to let the patient say when and what they eat?

Cool Handwashing thing!

I was in a restaurant the other night when I went to the bathroom to wash my hands. The restaurant only had one restroom and it was full. However, there was this strange looking counter that had two holes in it and a sign overhead saying Handwasher. I was very confused as I had never seen such a contraption. It said to put your hands in the little holes and it immediately turned-on water with soap. It was very cool and only took about 10 seconds.

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I started thinking… wouldn’t this be great for hospitals and doctors offices? And schools? People would be more likely to wash their hands with something so unique. It also takes less time and still accomplishes the same goal. I think it would be very easy for children to use because they don’t have to do any thing. The parents don’t have to worry about them actually washing their hands because there is nothing for them to do! It takes away anyone having to touch soap dispensers or water handles. It is very innovative and unique at the same time!

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.

http://patientsafetyradio.com/morgan-gleason/

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.