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.
I was honored to be invited as a guest blogger on DrGreene.com. I met Dr. Greene and his wife Cheryl in February this year, and they really are big believers in patients! I love that Dr. Greene spoke so much about shared decision making and really trying to understand the pain that patients report. I will be writing two more blogs for them in the next few weeks.
This blog entry was meant to provide some perspective on what it is like to be a teenager with a chronic disease. I try to be as “normal” as possible, but it is really challenging to try to deal with all of the medical issues while still in high school. I hope that this blog can provide some perspective to those who see patients and can help other patients know that they aren’t the only ones who are struggling.
The blog post can be found here.
I look forward to hearing other perspectives.
I have had a really rough few months. My year started off pretty well, and I was excited about my last semester of high school. Then, my mom broke her leg, and I was helping her get around. Then, I fell and split my elbow open and needed stitches. I have also been having a lot of back problems for a long time that the doctors haven’t been able to figure out, and I have been having testing often. Then, my grandmother died in March, and she was my favorite person in the whole world. And now, I had an ovarian cyst rupture. I seriously hope that I can have some good luck soon as it sounds like a lot more fun.
I have so many things to write about when I have time, but I am still recovering and I have a LOT of school to make up before graduation.
Just some quick thoughts and I will write posts on these later.
1. We don’t make it very easy on patients to get tests and results. Schedules are very rigid and if you need to reschedule, say for a funeral, then it can be weeks before you get the new appointment.
2. Directions need to be clear. Even something as simple as stitches had us a little confused on what to do.
3. Doctors should not get a pass for being rude just because they are a doctor. I am tired of hearing excuses that they are great diagnosticians but they just aren’t good at communicating.
4. Hospitalists are like substitute teachers. They are just subbing in for the actual doctor and often don’t have enough information or ability to make a change.
5. Some of healthcare is just actually understanding that the patient is having a really hard time and acknowledging that there isn’t much that can be done to make it easier. This is a hard process.
6. Nurses can make a huge difference in peoples lives as I found out when my grandmother was dying.
I will try to write some here and there, but I wanted to say hi and explain where i have been lately. I have some speaking engagements coming up, and I am always looking for new ones, especially after May when I graduate! Please let me know how you are doing and thoughts you have on the above. I love hearing from you.
I am very excited to be speaking next week at Christiana Care in Delaware. They have asked me to speak at their employee awards ceremony, and I am very honored to be able to share my story and ideas with them. Also, it is still very hot in Florida with NO snow, so I am hoping that I will get to see some snow while I am there.
Anyone have any questions for me that I should include in my talk?
Any tips or suggestions from my past talks (many are posted here on my blog)?
Thank you to Christiana Care for inviting me. I really love getting to share my experiences and ideas. I think I become even more passionate about patient experience as time goes on. I would love to hear from you, so please leave me a comment.
Tonight, I had dinner with a friend that I hadn’t really talked to in a long time. We had a great time catching up at dinner. She is in the CNA program at our school, but when asked whether she wanted to be a nurse, she said absolutely not because the blood makes her pass out. She started telling stories about getting blood drawn, and her stories were pretty funny. However, what wasn’t funny is that almost every story she referenced how the nurse or person drawing her blood didn’t understand that she can’t help passing out or vomiting. It is something that just happens to her. She has tried to work through it, but regardless, she either gets sick or passes out each time.
I also found it interesting that she is thinking about a career as a child life specialist so that she can help kids not be scared. When I was first diagnosed, I was terrified at having blood drawn. It literally made me anxious and sick. Now, I am pretty sure I could start my own IV and take my own blood. :) However, I think it is important to remember that these things are not routine to everyone. Their fear and symptoms can be very real to them. At the very least, we should acknowledge them when they tell us and see what we can do to ease the fears.
Last fall, I was honored to be invited to speak at the Dignity Health Summit Patient Experience Summit. I wrote about it here.
Dignity Health has been kind enough to share the video from that event with me and has given me permission to share it. I would love for you to leave any comments about it.
Thank you to Dignity Health for having me, for sharing the video, and for supporting Cure jM!
If you would like to have me speak at your event, please email me at email@example.com. :)
I had to do a survey for my math class, so I decided to do something interesting to me. :) Here is my output, and I would love to hear what you think about the data. Are you surprised by anything? Do you think the sample is representative of a bigger population?
The goal of the survey is to determine how having a chronic disease affects the use of medications, tracking between visits, number of visits to the doctor annually, and the overall perception of the healthcare system. Does chronic disease alter the healthcare experience?
Participants will be recruited through email and twitter and will be asked to complete a six question online survey using the SurveyMonkey survey tool. The recruiting process will continue until 10 days or until at least 75 people have responded. The survey first went out on November 3, 2014, and these results were finalized on November 17, 2014. The questions are multiple-choice questions with an option to write in a additional response on two of the six questions.
The questions are:
1. Do you have a chronic disease?
2. How many medications do you take regularly each day?
3. How many medications do you take on an as needed basis (only when you need them)?
4. What types of information do you track regularly?
5. How would you rate your satisfaction with the healthcare system as a whole?
6. How many times do you go to the doctor a year?
Overall, 118 participants responded to the survey. 52.99% or 62 respondents said that they have a chronic disease.
For the remaining five questions, the results are shown below where “yes” means the participant answered that they have a chronic disease, “no” means that the participant answered that they did not have a chronic disease, and “Not sure” means that the participant answered that they did not know if they had a chronic disease.
Question 2: How many medications do you take regularly each day?
Question 3: How many medications do you take on an as needed basis (only when you need them)?
Question 4: What types of information do you track regularly?
Yes: Mood, Cough frequency, Thyroid, Potassium, Salt, Calories, Food, Steps, Thyroid, Exercise, O2 stats, acid levls in blood, kidney calcifications, Drink, TSH, BUN, Creatinine, CBC, Phosphorus, Calcium, Height
No: Steps, Cholesterol, Body Fat, Heart Rate
Not Sure: B12
Question 5: How would you rate your satisfaction with the healthcare system as a whole?
The percentage of respondents who said they had a chronic disease was 53%%. According to the Center for Disease Control, about half of US adults have a chronic disease, so this result was as expected. I compared the results of the participants who said they had a chronic disease to those who said they did not or did not know. I was surprised that 12.5% said they did not know if they had a chronic disease.
As expected, people with chronic diseases took more medications more often than those who did not have a chronic disease. 90% of the chronic disease participants took at least one regular medication each day, but only 49% of the non-chronics and 63% of those not sure if they are chronic took at least one medication each day. It was also noted that 19% of chronics took 9 or more medications each day, and none of the non-chronics or not sure group took 9 or more.
As expected, the chronic patients took more as needed medications than the other groups. When asked how many medications were taken on an as needed basis, the chronic disease population took medications on an as needed basis 89% of the time compared to 66% for the non-chronics and 63% of those who didn’t know if they had chronic disease. It was interesting that none of the groups took more than 5 as needed medications on a regular basis, and the non-chronic group either took non or 1-2 as needed medications. 38% of the not sure group took 3 – 5 as needed medications regularly while only 16% of the chronic group did.
When asked about information that is tracked regularly, weight was tracked close to 50% of the time in each group and was the most commonly tracked item. Also, blood pressure was tracked about 25% of the time in all three groups. As expected, the chronic group tracked most often with 90% of them tracking at least one item compared to 60% of the non-chronics. Surprisingly, 62% of the not sure group tracked regularly. In the chronic group, pain and symptoms were tracked about half of the time in the chronic group but not very often or at all in the other groups.
When asked about overall satisfaction in the healthcare system, I was surprised to not see a huge difference between the chronics and non-chronics. The responses were fairly similar with slightly more of the chronics being somewhat satisfied when compared to the non-chonics and slightly more non-chronics being somewhat dissatisfied than the chronics. The most surprising group to me was the not sure group who had 0% very satisfied or somewhat satisfied, and a whopping 37.5% very unsatisfied.
When asked how often they went to the doctor, it was not surprising that the chronics went more often than the non-chronics, but it was surprising to me that 25% of the chronics went more than 13 times a year and that 68% of the non-chronics went to the doctor only 1 – 2 times a year.
My hypothesis was actually that chronic disease patients would have a more negative view of the healthcare system, and that was not found in the data. The group that isn’t sure about having a chronic disease seems to be the group with the least favorable view, and non-chronics seemed to have a slightly worse view than the chronics. I would love to learn more about the not sure group to see if they are undiagnosed patients which might explain their higher medication usage, tracking behavior, and visits to the doctor.