Redesigning a Global Framework for Measuring Patient Safety’ was the theme of the meeting organized in Salzburg, Austria, from 5 to 10 September 2019.

This meeting brought together 50 participants, including global healthcare leaders, researchers and design thinkers, patients, providers, and experts in measurement, quality improvement, operations, and informatics from measurement and patient safety-focused organizations from around the globe.

The program had a strong focus on synthesizing experience from different settings, and focused on cross-continuum measures that support the safety of patients and the healthcare workforce with the ultimate aim of developing design principles and a framework of actionable areas of measurement focused on learning and improvement.

We have spent a lot of time talking about the best way to describe one’s pain.  The American Chronic Pain Association  has pain maps that help you show the intensity of your pain, where it is, and  how it feels, explain what makes it worse, and for some, the symptoms they experience. https://www.theacpa.org/pain-management-tools/communication-tools/tracking-tools/

When a person’s report of pain is believed, it calms their defensiveness and can help them work toward managing their pain.  Interestingly, it also provides some sense of dignity to know that someone understands that they are in pain.  If you think about it, no one wants to live with pain. To have pain and be questioned about the reality of the pain is extremely difficult to handle and depressing.  When a person is believed about their pain,  they will be treated with the same respect and dignity as anyone else.

Recently the American Chronic Pain Association and some if its members took part in a project called This Is Pain.  Seven members were selected and flown to New York to tell their stories to a visual artist, Trina Merry, who translated their stories into a beautiful work of art on their bodies.  When asked about the experience, one of the things that stood out to me was that each person had been treated with dignity and respect.  I think the fact that the artist believed their stories, listened to what they had to say, and was able to capture each story in such stunning  artistry speaks volumes.   I invite you to see their pictures and hear their stories as we explore This Is Pain.

Over the years, the American Chronic Pain Association  has developed many tools to help you better communicate your pain to your health care professional.  They are easy, free, and help you make the most of your time with your health care professional by providing a picture of your pain.  While these pain maps are useful tools for you, several of our ACPA members had the opportunity to go an extra step when describing their pain.

Seven ACPA group facilitators were selected to tell their pain journey to an artist, Trina Merry, who depicted their story on the body of that person.  Once completed, they were made into life size posters and displayed at the Oculus in New York City from December 12 to 15, 2019.  You can hear the participants tell their stories and see it being created on their bodies at www.thisispain.com.

We asked each of them to share what this experience meant to them.  In their own words here are their comments.

The organizers made extra efforts to take care of each of us.  I was amazed at the ease with which my requirements were accommodated.  I was able to get extra leg room for each of my flights and had no problem getting wheelchair accommodating transportation to and from the airports.  The organizers were able to make sure I had the extra day at either end of the trip to recover to “be my best” for the interview and camera. The room at the hotel was handicapped accessible and was great!

Frankly, I was surprised at how “low stress” the interview and painting schedule was for me.  I felt I was part of the team and integral to the production schedule.  I was interviewed on camera by the director and never felt any stress or pressure.  The director was extremely personable and interested in me and my journey with chronic pain.  I felt I found a friend.

When my turn came to get painted, Trina and her associate put me totally at ease.  Although I was a little leery of being in underwear in front of a group of women (I joked that I had been naked in front of only my wife for the last 31 years!), the entire situation was not stressful or strange at all.  Everyone was professional and there to get a job done.  Although I was a little stiff by the time the painting session was finished, the result was worth it.

I was touched by the care with which everyone treated me.  An assistant even offered to help me get the paint off my back after the photography session was complete.

When I had problems with flight on the way home, I was able to reach out and contact the program coordinator to easily resolve the problem.

From start to finish, this was an amazing effort that was well coordinated and organized.  I understand that each of us was treated with respect and courtesy through the effort.

My trip to New York City as part of the “This is Pain” campaign was both exciting and scary at the same time. I was so surprised to get the call about participating and very honored to be chosen. The fact that I had never been on a plane or to a big city did make me question myself but passing on this opportunity was not an option. I have been trying to help give those who suffer with chronic pain a voice for more than 20 years. There was no reason to be afraid because each and every detail was seamlessly coordinated by the Mission team. From car service to and from the airport, and each day to the studio, to the fabulous catered meals each day on set. No stone was left unturned. The on-camera interview was incredible. I received a peek at what it was like to be on TV. The entire production crew was wonderful and made me feel calm and comfortable.

The painting session with Trina Merry was unbelievable. Her vision to bring the pain of each participant to life was  spectacular. Lastly, the “networking” breakfast set for the final day of my journey gave me the chance to meet not only other ACPA group leaders, but also some of the people from BioDelivery Sciences International, Inc. Everyone’s excitement in hearing our stories could only be described as amazing—total respect from each person. Although I was exhausted when I arrived home it was a fantastic voyage that I am extremely proud to be involved with.

The interview served to highlight and describe the facts of how life is for people who live their lives in spite of chronic pain. We are victorious.

The main point is to acknowledge and bring awareness to the public that people in chronic pain; the visible as well as the invisible now has a face and place in pain history.

I would like to sincerely thank the This is Pain staff, Trina Merry, the artist, and  all others who were a part of this great work and the American Chronic Pain Association for this experience and being my beacon of light.

When I received the request to participate in my inbox I thought I was too busy.  But the nagging voice in my head told me:  Pat, you have to do this for everyone with chronic pain.  We need to be heard and understood. This is an ethical/moral decision.  I retrieved the email and entered my data, figuring that would probably be the end of it. When I was subsequently contacted by the person who would interview me, I was impressed with her masterful questioning which built on my responses and prodded me to think deeper.  She, and a second interviewer, were very respectful of my need to pause at times to further reflect on the deep hurt, the feelings of isolation, and of being alone in my suffering.  I was brought to tears and they allowed me those tears.  I was able to be vulnerable with them due to their sensitivity, and I really appreciated it.  Further, it helped me realize I still have feelings which needed to be acknowledged and reconciled.

The artist later interviewed me directly and asked for my description of the pain sensation. She also asked what color it is—something I never thought about. My pain begins in my buttock and continues down one leg. Because of the location I was not comfortable with the artist paining directly onto my skin.  A model was used for the actual painting of my pain, which is neuropathic and variable based on the time of day, activity level and other factors.  At various times it pulls, burns, is sharp, dull, hot, or shock like. There are times when nothing will calm it.  I’ll change position, walk around, etc. and it changes the intensity slightly.

 I also have knee pain on the same side from an injury and have altered pain sensation there, called allodynia, which is actually a decrease in the knee pain intensity.  We stayed in a great hotel in the East Village and were all together only once for a great breakfast.  I believe the others were quite brave for having their bodies painted.  The artist took quite a bit of artistic liberty with her representation of my pain using a reverse blue light technique.  She painted my pain as widespread bodily pain.  I cannot even imagine how I’d cope with that.

I know that the invisible nature of pain is often a barrier.  It is my hope that the This is Pain initiative will make a difference in removing this barrier.  The director of filming was an attentive young man who asked great questions and was quite sensitive and truly interested in what I had to say to his pointed questions.  He later confided that his wife has chronic pain and this experience interviewing people with pain has caused him to feel regret for his prior relative lack of understanding of her true suffering.  He said he called her the first day at a break and each evening has apologized for his lack of understanding before. This tells me something about chipping away at barriers.