As many of you know, I have been volunteering for Children's Hospital for the last 5+ years now. I have been on numerous committees making sure the patient and parent perspective is always part of the process and decision-making. There is always a good feeling when you know you have made it just a little bit better for future families being in the same shoes as you are.
"My baby" over the last two years has been the hospital's Family Advisory Council. I worked hard to move the Council from being led by the hospital to a truly Parent led Council. It took a lot of hours, relationship building, diplomacy, persuasion, and leadership to move the Council around. To lead a group of 40 people in a new direction where all decisions are made by vote was a great, very rewarding challenge. I am still very involved with the Council, but taking a less involved Chair position this year. It is a good change.
I love to fix things. I love to organize chaos. I love change.
I am just about to enter unknown territory once again at Children's. I am getting introduced to PCORI (Patient-Centered Outcomes Research Institute). The mission is to make everything patient-centered, how research is done, how evidence is collected, and how research findings are disseminated. The philosophy is that every patient can contribute to research rather than today's approach of small clinical trials with very defined criteria. Today, the average time to get research to touch patients takes 18 years. There is typically another 12-18 years for the research to widely touch patients. We're talking 30-40 years.
PCORnet (the National Patient-Centered Clinical Research Network) governed by PCORI is a national network conducting clinical outcomes research. Every patient can contribute knowledge right in clinic. This is about wide-large research that can reach patients quicker. The goal is to help patients and caregivers make better-informed decisions while having information more readily available.
To reach this goal, PCORnet has created 29 health data networks, Children's Hospital being one of them. The first phase of the grant is to come up with data models and processes to make this happen. My role is to work with 7 other pediatric national hospitals to create patient engagement processes throughout the whole research process. It is very vague at this point. Nobody has any idea exactly how this cooperation will look like. Nobody has an idea of the time commitment right now, but I am hearing we have a lot of work ahead of us.
And this is the thing. I love this kind of chaos and unknown. I know I am part of something that has never been done before. I am told that FDA and NIH (National Institutes of Health) are watching what we're doing.I know I am going to be challenged. I know there are going to be times I am going to want to quit. I know I am going to have my doubts if this is for me. But I also know that I am ready for the next level of parent involvement. I am excited to start working with parents across the country. I am excited to dive into the research field, which I know very little about. And I am getting paid, which is always a bonus.
Children's Colorado had their kick-off meeting this past week. I am excited to say that I was able to follow along for the full 2 hours. It was all about PCORI and research data models. I am now waiting for my project manager at CHOP (Children's Hospital of Philadelphia) to get us parents together and start work. I am scared, I am excited, and I am ready for a challenge!