There was a healthcare conference last fall that I desperately wanted to go to. The conference was for healthcare professionals — doctors and researchers and other clinicians — to hear the latest and greatest about what’s going on around this particular disease, my son’s disease. I had to email half a dozen people to find the right one who could tell me what I had to do to gain access to the conference so that I could register and attend. I had a special form that had to be filled out by the director of the clinic that my son attends and then it had to be sent back to the organization hosting the conference and then they had to provide me with login information so that I could register. I saved money for a year. I drove my whole family, including four children ages 4 and under, 1500 miles so that I could go to this conference. I finally got the green light to go and I was pumped.
The conference was targeted toward healthcare professionals and much of the information presented was above our heads. I’d just relearned the Punnet Square 2 years prior and they were talking DNA sequencing or the particle sizes of different nebulized medications. Surprisingly though, I understood a lot more than I had anticipated. I was in awe for most of the 3 days that I was there, reviewing posters on everything from infection control to quality improvement and everything in between. My eyes were opened and I finally had a deeper understanding of why many things are done the way that they are. I asked for clarification when I didn’t understand something. I had paid the fee to be there and had just as much a right to ask the questions that I had as anyone else there. By the end of the conference, I had a book of notes and questions, things I couldn’t wait to talk to our doctor about, a stack of business cards from admirable folks who I had had the opportunity to cross paths with, and a catalog that included every talk and poster and presentation on the disease that my son has. The book, to this day, sits on the end table in my family room and I reference it very regularly.
Toward the end of the 3 days, I found a member of the leadership team that was putting on the conference and I asked him why parents and patients weren’t invited to attend. He responded, without hesitation, that parents and patients at a conference like this are a distraction. He was serious.
I think patients and parents are the focus, or should be if they’re not already. We are focused more than any scientist on finding a cure. We are better investigators of options and alternatives than any doctor ever could be. We create focus when we need another treatment option or need a referral or need to find a better way to perform a process or save time or money. We keep notes and make phone calls and insist on perfection. We are the energy behind QI projects, and often times even the ideas for them. We bring such a unique perspective to the healthcare team, yet most of the time we’re not a part of it. We are on the receiving end of care, and to make the healthcare system better we cannot be viewed as a distraction but rather as the focus. Listen to us. Make your decisions around what we want. Ask us what we want. Make us a equal part of your team.
I’ve been fortunate enough to stumble upon a group at Cincinnati Children’s whose focus is just what it should be — patients. People still think that I speak up because I like the attention or because I’m trying to prove a point or get my way. All of those things are true, but the real reason that I do it is to save my sons life. If I don’t fight for him, who will? There are ways to make the healthcare system better, and I speak up about them. I interject my ideas and provide feedback when I think something may or may not go over so well with others. It’s so interesting to see how different perspectives can be when I’m meeting with clinicians. Most of them do truly have the patients best interest at heart. But more times than I can count, ideas and priorities do not align. We both want to get to the same end point, the change for the better, but the way that we might go about it could be so wildly different. Instead of working in two paths that separate and then come back together, let’s walk together along the same path and learn from one another. We can save time and money while improving the care if we could just work together.
I’m not just a “patient.” I am a mother, a wife, a daughter, a sister, a niece, an aunt, a neighbor, a friend. I have experience as a marketer, a researcher, a photographer. I have sold Tupperware, makeup, knives, grills, linens and Girl Scout cookies. I have served coffee and cosmos and everything in between. I am a volunteer, a blogger, an advocate. I am a chronic pain sufferer, a Starbucks lover, and allergic to many animals. My point is that I have life experience and so does every other person who has ever been a patient. I have perspective to bring that might not always be viewed as relevant, but the collective knowledge of micro-experts, patients, myself and the many other parents that are fighting to find ways to keep their children healthy and alive, what we have to say is what should create the focus.
When I was told that patients are a distraction, I was still relatively new in the world of the empowered patient. Today, if I cross paths with a highly respected healthcare provider who shared the sentiment that patients are a distraction, they should expect an earful and leave our conversation realizing how much they wish they had me on their team fighting for their cause, because I am anything but distracting when it comes to fighting for my son’s life.