This past Thursday and Friday, I spent time in Alexandria, VA participating in an amazing meeting called “Promoting and Sustaining the Collaborative Network Model in Pediatrics” that was sponsored by the American Board of Pediatrics Foundation (ABPF), the Children’s Hospital Association, the Cincinnati Children’s Hospital Medical Center (CCHMC) Learning Networks Core, and the Pediatric Center for Education and Research on Therapeutics at CCHMC. The purpose of this was to engage experts to address how to sustain multi-site networks that are so essential to translating evidence into practice, building the scientific foundation for discovery and improving child health. We reviewed lessons learned from successful networks that engage a variety of stakeholders, including patients, parents and family and representatives from academia, government, industry, and philanthropy. In attendance, there were patients and parents, clinicians, network leads, and representatives from a variety of organizations: children’s hospitals, public and private payers, federal research agencies, professional organizations, children’s hospitals, and foundations. The aim of the meeting was to create an action plan for change - find ways to create these networks - and I was there to let them know of my experience with networks and why we need to work together to develop the networks that already exist and to use those learnings to create new ones [with specific and selfish interest in creating one for CF].
I was asked to speak before we broke into our working groups, connecting the points discussed throughout the meeting, and here's what I had to say.
My name is Erin Moore and I have a 3 year old son who has Cystic Fibrosis. He has a 50% chance of living to age 41, and I am here today because I am determined to beat those odds.
Several years ago, shortly after Drew was born, I was invited to be a part of a Facebook group called CF Mamas. It's a group of over 1000 parents of children with Cystic Fibrosis, sharing everything from recipes to heartache. A few weeks ago, someone had shared that they were anxious about their daughters sinus CT scan later than day because she was going to be sedated. I was quick to comment that my son, at age 2, had undergone a sinus CT scan without sedation at that very same hospital, and that she ought to ask about it. Moments before their scheduled procedure, she asked if they could do the scan without sedation and they agreed to try. Thirty minutes later, that woman posted on Facebook that the scan was complete and that she was on her way home with her daughter - not sitting in recovery waiting for her child to wake up, not taking up a room waiting for a doctor evaluation before discharge, she was already in her car driving home. A simple conversation on Facebook that I just happened to stumble upon at exactly the right time saved that family time and stress. It also saved them and the doctor and the hospital and even the insurance company money by not having to sedate that girl...all because of a conversation that I stumbled upon. This mom, like many moms, didn't even think to ask about this as an option. Or perhaps she did, but the doctor who ordered the test was prompted to schedule time for sedation and everyone just assumed that that's what had to happen. No one expected or even fully appreciated the value derived from that innocent post on Facebook to a group that a mom expected nothing more from than perhaps some empathy. While I'm not suggesting that funding isn't important, I think it's a myth to think that the only solution to improving care is to spend a ton of extra money.
On the other side of this, I have seen how harmful information sharing within this vacuum can be. Information often takes on a life of its own and inaccuracy becomes fact. The medical decisions that some of these parents are making without medical evidence or expertise is scary and dangerous. I have seen medications stopped altogether because another parent shared insights from a non-scientific non-medical personal experiment that they had performed, and the results scared others when they believed and held that data as truth. I'm certainly not opposed to personal experiments, I do many myself, but I share that data with my sons doctor and we work together to find insights and value before taking any kind of action. The lack of clinician involvement in these networks is allowing misinformed parents to decide the value of information they are hearing.
I've had the opportunity to see both the positive and negative side of this organic, unstructured, patient-only network. What it has shown me is an opportunity to improve the value by having this data organized and catalogued for future reference and use. Opening this group to other contributors has value - doctors, patients, researchers - using their collective knowledge to create a learning network full of valid and robust data, where question asking and idea sharing is encouraged, finding out what other people are doing that is working, will truly generate "best practices". Patients are creating these networks with or without clinicians, and we're all here today because we see the opportunity to work together to enhance these networks and create learnings. It is both time and cost saving and ultimately holds the promise of improving outcomes.
I am not just "a patient". I am a mother, a wife, a daughter, a sister, a niece, an aunt, a neighbor and 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 jury duty. I am a volunteer, a blogger and an advocate. I suspect that many of you here today are more than just clinicians. My point is that 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 so hard to keep their children healthy and alive, what we have to say should be included and valued.
My son, at age 3, has a multi-drug resistant bacteria growing in his lungs that has had us in and out of the hospital since January. What I need is access to real-time, trusted, reliable information on everything from novel approaches to achromobacter eradication to reasons why having a lizard as a pet could be detrimental to his health. I want to know what other parents know and have tried, and I want a doctor to weigh in on why those options may or may not be good for me. I want to hear about what tracking methods people use and what they use to connect with their doctor between visits, but even more, how its improving their care. I want other patients to feel empowered to ask about alternatives and suggest trying something new to their doctor, no matter how alternative it may be.
And before I close, let me ask you this question: Is it more preposterous to think that the most relevant, valid, useful, action-worthy information about a disease could come from outside the establishment? Or that a life-saving treatment option can't be found published in any journal?
I truly believe that this connected technology, these collaborative networks lower barriers to engagement, empowering and enabling all, and I appreciate your dedication to working together to help in creating them.
- Posted using BlogPress from my iPhone