The National Center for Interprofessional Practice and Education puts on an annual Nexus Summit in Minneapolis that educates administration and professionals in the health care field using a method called Interprofessional Education or IPE. It has many facets but in short it’s about building team based care with the patient and families being an equal part of the team. Click here to learn more. There are schools from all around the country that come to learn new skills to put into practice. I along with four other patients were invited to be a part of it last year and bring what they called our expert patient perspectives. We spent time in the classrooms listening to the curriculum then gave our feedback as to what we saw and heard from a patient perspective. On the last day of the 2018 Nexus Summit we got up on stage and shared our life stories and what we had experienced at the summit to all the attendees. It was a great success, attendees and presenters appreciated the feedback we offered and it felt empowering to give the patient a voice in this forum. It felt like seeds of change were planted in the hierarchy of the health care system. I was really excited when we, the patients were asked back this year to serve in a larger capacity.
At the 2019 Nexus Summit we were proud to see the seeds that we had planted were starting to grow. There was much more consideration of the patient in all the classes we attended. We all noticed a big difference in how people were talking about the patient and including them at a higher level. One of the first classes I attended the instructor bullet pointed all the things they were doing for the patient. I was sitting there thinking, “How can I help take this to the next level?” So I put out the suggestion, “What if you reframed this a bit and instead of doing all of this “for” the patient you did this “with” that patient?” I felt that little shift could make things more patient inclusive. From the a-ha’s in the room it was clear that the attendees recognized that also. The instructor pointed out that it was just a small difference in wording but it really did shift the whole paradigm. When we moved into doing group exercises I saw how the attendees were consciously using “with” instead of “for” and how much more patient forward the exercise became.
What if you reframed this a bit and instead of doing all of this “for” the patient you did this “with” that patient?” I felt that little shift could make things more patient inclusive.
It reminded me of the experience I had with my amazing spine surgeon, Dr. Siguard Bervin from UCSF. After a long strenuous search I found this phenomenal doctor. I underwent a major spine reconstruction surgery in late 2016. It was so evasive the chances of me making it thru alive were about 50/50. It was my first and only experience in twenty years of dealing with all the complications of being paralyzed where I felt I was made a part of the team. He looked right at me and very seriously told me that my role in the surgery was just as important as his. That I had just as much responsibility as he did for the outcome. He gave me a list of nutritional, emotional and physical goals I needed to accomplish to help increase the chances of success. It really empowered me to take control of the outcome, involved me and gave me a sense of purpose as opposed to the other surgeons I interviewed that wanted me to sit back and take whatever they were giving me. The outcome of the surgery was much better than anyone had predicted and I truly believe it was due to the team mentality. I have not experienced anything like that in the health care system before or since.
But then I had the pleasure of being a judge for the Ideation and Prototyping Workshop which was a new program Nexus added this year. The University of Pittsburgh presented an idea about expanding their orthopedic practice to include ghosting the patients not only in the clinic but after they were discharged and back in their homes. The clinic was already implementing a similar idea to what I had experienced with Dr. Bervin and they named it “Pre-hab.” When they explained it entailed a range of pre-prep for surgery including the patient to produce better outcomes I got chills up my arms. They had a name and a practice for what I had experienced! I truly believe this idea to be one of the keys for better outcomes and for making patient centric health care. Care that involves the patient at the deepest levels and makes us just as responsible for the outcome. Not just handing over the reigns and accepting whatever outcome is given. I was so encouraged to hear that this “Pre-hab” practice was being implemented somewhere in the system. I also found it interesting that the team had told us after the judging that they felt like they had an unfair advantage over the other teams because they had a patient on their team. Unfair I thought was not the right perspective. In my opinion they had the correct and fair perspective by including a patient and they ended up one of the winners of the competition.
I was able to share more of my health care experiences positive and negative again this year. The patient panel was invited back up on stage in front of the attendees to offer up some more observation from the 2019 summit. I left this year with a large sense of hope. After spending so much time in the health care system and being caught up in the dysfunction time after time it can leave you feeling pessimistic. But to see all the attendees there who had open minds, were willing to listen and try to improve on the patient experience gave me encouragement. Several people came up to me to tell me about new ideas they were implementing or going to try and implement and it left me feeling positive and empowered to keep fighting for the patient. I hope to see the seedling grow bigger next year!