A Survey of Patients

For my math class, I have to do a survey and then write a report on the methodology, determine the confidence intervals, and summarize the results. I thought I should at least try to make it interesting, so I did a survey to figure out how much having a chronic disease affects medications, healthcare satisfaction, medications, tracking things, and doctor’s appointments.

Please take my 6 question survey and share with your friends. It is very quick!

https://www.surveymonkey.com/s/ZSLHXMT

I will share the results when it is finished.

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

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Reflections from a Patient – UCSF Peds By the Bay Post

I was honored to be asked by the University of California San Francisco (UCSF) Peds by the Bay team to write a “Reflections from a Patient” post. Not only was I happy to be asked to share my experience and thoughts, but I got to work with a great editorial team. I am also the first one to write a patient reflections piece, and I hope that it starts a trend. Patients really do need a voice.

Here is the link to the post on their site http://pediatrics.ucsf.edu/blog#.VD9DIdTF9Ec.

I am also posting the text here but click on the link to see it on their site for nice formatting and pictures :)

The Peds by the Bay Blog is fortunate to welcome our first post on the patient’s perspective, from a well-known blogger, Morgan Gleason. Her perspective below highlights her thoughts on today’s medical care in general and is not directed at any hospital or clinic in particular.

Last fall, I went into the hospital to get my regular Solumedrol and IVIG treatment that I had been getting for about 3 years. After the treatment, I usually get a bad headache that sometimes lasts for a few days, but this time, it was different. I was discharged from the hospital on Friday, and on Saturday my headache was worse than normal, and I had new pain in my knee and back. I went to the Urgent Care because Advil and Tylenol were not working. They prescribed Vicodin, and other than me acting a little crazy and getting some short-term relief, the headache was still very bad.

That Monday, we called my doctor. He said to wait it out and maybe it was a virus. When we called back on Tuesday, he prescribed a higher dosage of steroids to take for a few days to see if that helped. Several times, we discussed going to the ER but I didn’t want to go because I knew it would mean a spinal tap. By Thursday night, I was lying on the bathroom floor crying. My mom said enough was enough and took me to the ER. The spinal tap was done and showed white blood cells in the spinal fluid, which meant I had meningitis, so I was admitted for 8 days. When I was doing better, they send me home. I had a few rough days after I got home, but then I finally felt better. It took me a few months to get my strength back and to be able to really feel better, but I was healed. I was relieved to be back to riding my horse and hanging out with my friends.

However, I also realized, as I looked back on my hospitalization and the weeks afterward, that many times, the things I went through were tougher than necessary for my family and me. I realized that some small changes could really have improved our experience, and I decided to speak up about them. Please be aware that we are very happy with our doctors and hospital. These are common issues that I have experienced with most doctors and hospitals and they are meant as examples to inspire improvement.

When you are very sick and not feeling well, it can be terrifying. When the call is made to the doctor’s office and the patient (or mom) says that they are very worried, it shouldn’t take hours to be able to talk to the doctor. In most cases, we are asked to leave a message for a nurse who will call back when she has time – this could be hours or even the next day. To get a response from a doctor at the time you call, or a few minutes after you call, would be a huge relief to patients and families alike. When you are sick and concerned, minutes are not just minutes, they are each 60 seconds of anxiety and stressing that something could be very wrong.

I know that teaching is very important in healthcare, and I usually try to teach the med students and residents about my rare disease so that maybe they will be more familiar with it than your average doctor. However, it is not comforting to hear things like, “I haven’t ever done a spinal tap before. Can I do this one?” I already get stressed about spinal taps due to a complication I had one time where I had a leak, and I had to stay in the hospital for 12 days. It is better to discuss things like that in the hall and then talk about it with the patient and family.

When I was admitted, we had been in the ER all night and had been suffering through many sleepless nights before we arrived. I had a horrible headache, was exhausted, and all I wanted was to go to sleep. However, I had someone in my room non-stop for hours after being admitted. Finally, a nurse saw I was on edge and put a sign on the door that said, “Do NOT enter unless REQUIRED.” It was an amazingly kind act and let me get several hours of sleep. Sleep is important for the patient and the healing process.

I had three doctors who were treating me at the hospital. Each one had his own ideas about the best treatment. Instead of spending 30 minutes together in a room talking about it, they would each tell their opinions to my mom and then ask what the other doctors said. From my experience, we could solve a lot of problems in the hospital if we just had ALL of the doctors treating the patient come in the room at the same time to discuss what is happening and to determine a plan together. Some hospitals are starting to do “patient-centered rounds”, but I haven’t yet had the experience of all of my doctors coming at one time.

The discharge plan is important and needs to cover what to do in different situations. It shouldn’t just say call the doctor or go to the ER with these symptoms. I got home and had worsening pain and didn’t have any real plan to deal with it if the meds I was given weren’t enough. This made me suffer and worry about having to go back to the hospital.

At our follow up visit to the neurologist, we were greeted with an iPad to fill out information. It asked SO many questions, and it really seemed to be a lot since I was an existing patient. Then, when we got into the room, all of the same questions were asked again. If you are going to ask patients to do work, make it meaningful and use what they give you. If you are going to ask the questions again anyway, skip the iPad or clipboard. I would rather have a conversation with the doctor than fill out the forms.

Both the neurologist and the hospital have a patient portal. We have logged into both, and unfortunately that requires two different logins that have different requirements so we can’t even use the same user name and password. I actually am up to 7 patient portals so far. Then, when I do log in, the information is so very limited that it isn’t helpful. For example, none of the visit notes are there. Each has a medication list that isn’t correct and the hospital has a bunch of lab test results but that is it. It is great to have online access to my information, but this process needs to be easier for the patient.

Unfortunately, I subsequently had a second case of meningitis. However, this time, I was much more prepared. My mom had requested all of the records, so this time she could give specifics to the doctor about what happened last time. We knew to ask for a sign on the door to let us sleep. We knew what meds worked and didn’t, and we made sure to stay at the hospital long enough to try out the home pain meds to be sure they treated my headache adequately. In other words, we did our part to make the experience better, and the doctors and hospital also tried to make it better. It certainly wasn’t perfect, and this experience inspired me to make videos, write blogs, and speak at medical conferences about patient experience. If everyone would work together, I believe can improve the experience for patients, families, and doctors.

About the author: Morgan Gleason, a Florida high school student and patient experience advocate, shares her healthcare experiences to inspire change. Four years ago at the age of 11, Morgan was diagnosed with a rare autoimmune disease called Juvenile Dermatomyositis. After making a video that went viral while in the hospital for aseptic meningitis, she began recording more videos and writing posts for her blog as well as writing articles for journals and other healthcare sites. She enjoys sharing not only her frustrations with the system, but also simple examples of ideas and methods that can make it better. When she isn’t in school or working as a patient advocate, she is riding her favorite horse Riley. See more at http://morgangleason.com and follow her on twitter at @Morgan_Gleason.

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.

Stanford Medicine X

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I had the privilege to be a speaker at the Stanford Medicine X Conference at Stanford Medical School. I was honored to be selected to participate. It was a great conference for many reasons, but the biggest reason is that they include patients. It was so great to hear other patients tell their stories and to meet other people who have similar ideas.

Here is my poster that I used for my talk. I would love to answer any questions about it, so please leave me comments. Basically, the top is about me and my medical experience. Then, I have examples of creative solutions I have seen to solving common challenges. Third, I have advice for having good patient experience. And then I finish with some challenges that I still experience in healthcare. I hope that people will work on solving those problems with me.

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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.