Have you ever been a patient or had a loved one who was a patient in a hospital? Did you feel overwhelmed and scared? Was a lot of information thrown at you? I am guessing that your answers to the above might be yes. I know that I felt that way when Josie was in the hospital. I was in a new environment and I was scared out of my mind.

One thing I did that really helped was to write. I kept a journal. I kept track of everything from my parking space number to the names of the nurses on duty. I documented the medications she received and I wrote down questions and concerns I had for the doctor. Writing gave me a sense of control in a situation in which I had none. It helped me stay organized and on top of what was going on each day.

In my conversations with other patients and families over the years I have learned that they too often found comfort in writing. I decided that the Josie King Foundation needed to offer a journal that would help patients and their families manage their hospital stays. Each page would represent a day of health care, whether the patient is in the hospital or after they have been discharged. We call it the Care Journal.

It was time to take the Care Journal out for a spin in the healthcare industry. What I learned shocked me. I was having dinner with a wonderful group of nurses. I excitedly unveiled the Care Journal campaign and as I waited for them to tell me how great of an idea it was. All I saw were blank faces.

They told me what it felt like to them and their colleagues when they see a patient or family member writing. It makes them feel threatened. Healthcare providers think that patients are creating documentation so that they can later sue. However, they all agreed that when they or their loved one was in the hospital that, absolutely, the one thing they did was to write. I asked other healthcare providers if they felt threatened in the same way, and the majority of them did.

I had no idea that nurses and doctors felt this way. The last thing I wanted to do was to further alienate the nurses from the patients, but I felt so strongly that patients should have this tool. My nurse friends and I came up with the perfect solution. The Care Journal needed to come from the hospital. It needed to be a gift from the nurse to the patient or family member.

This made great sense. We could offer a handy tool AND we could help bridge the gap of mistrust between the healthcare provider and the patient. Now, instead of a nurse looking at a patient and feeling threatened that nurse can say, “Oh, I see you are writing in your Care Journal. That is great and don’t forget to write down your questions for the doctor when he makes his rounds.”

Right now, we’re working on the final touches of the Care Journal. We expect to have them in one month. If you work at a hospital interested in partnering with the Josie King Foundation to distribute Care Journals to your patients, I will send your hospital however many you would like. You can write up a personal note to your patients telling them that you encourage them to partner with you in their care and attach it to the inside of the Journal. All I ask is that your organization make a donation to JKF. Just contact me and we’ll get you started.

If you are a patient, the Journals will be available from our website in a few weeks. All the money from the Care Journal project will go back into this patient safety movement, funding great new ideas to improve the culture of healthcare.

I hope you like this project. Please email me at sking@josieking.org to learn how to partner with us, learn more about the Care Journal, or- very importantly- let me know your thoughts on the project.