As the ImproveCareNow program manager, my role is to coordinate and align all the people who tirelessly work to make ImproveCareNow the leading learning health system in the world.
I stumbled across ImproveCareNow in 2009, when I was looking for an opportunity to use my project management and process improvement background to help improve the healthcare system. I quickly became hooked. I’m writing this post to express some of what inspires me about our work and makes me so proud to be a part of ImproveCareNow.
John Wilbanks once said to me “people want to share, the problem is that our systems are set up to restrict and disincentive sharing”. To give an example, two clinicians from different ImproveCareNow centers wanted to collaborate on a handbook to help kids better manage their IBD. However, before they could share their drafts with each other, lawyers from their respective hospitals spent several months going back and forth on copyright and branding issues. This is a classic example of what we call a ‘transactional cost’. These costs make sharing almost ‘not worth it’ and prevent the kind of collaboration that is necessary to change healthcare.
One of the ImproveCareNow Network’s aims is to reduce and eliminate transactional costs by designing systems that reward sharing and more importantly make it easy and convenient. A great example is the ImproveCareNow Exchange (picture Pinterest for healthcare). This internal collaboration platform has been developed by a team of volunteers to make it easy for patients, parents, clinicians and researchers to share and discuss tools and ideas to improve chronic illness care for kids with IBD.
Tools to improve healthcare are almost always ‘non-rivalrous’; meaning just because one person uses a certain tool doesn’t mean it won’t work or be helpful to someone else. Let me paraphrase Peter Gloor who described it nicely in his book “CoolFarming”: Two people walking opposite directions on a path meet and decide to give each other a dollar, as a result they each walk away with a dollar. The next day the same two people meet and this time decide to share with each other an idea they’ve had to improve healthcare, as a result they each walk away with two ideas to test.
At ImproveCareNow we have brought together hundreds of patients, parents, clinicians and researchers and enabled them to share tools and ideas. As a result they are all walking away with many more ideas and tools to transform care. This is the power of sharing. Our collective intelligence and ability is so much greater than our individual intelligence and abilities. It is this kind of power that is necessary to tackle the thorniest of our nation’s challenges: How do we provide our children with the care they deserve?
I recently saw the following tweet: “How do you know you work in healthcare? There’s still a fax machine in the office and moreover it’s used”. It really summed up a lot of the technology challenges healthcare is facing. We are trying to solve today’s problems and improve today’s care using outdated technology. No wonder we’re frustrated! At ImproveCareNow we’re fixing that.
ImproveCareNow has developed a data-in-once registry (called ICN2) to harness clinical data collected routinely by our clinicians at the point of care. These data are enabling us to research which treatments work best so we can feed that information back to our centers and they can improve care for their patients. Additionally, we’re using cell phone apps and SMS messaging to collect patient data which helps patients understand their IBD better and allows clinicians to work with them to customize care. And this is just the beginning. We’re working towards a technology infrastructure that combines clinical data and patient data; a system in which patient health can be monitored remotely and disease flare-ups predicted and prevented. That’s the promise of technology and our future healthcare system.
Learning from Variation:
Fred Trotter writes “when you’ve seen one medical practice, you’ve seen one medical practice”. Each ImproveCareNow center operates differently; each has its own unique culture, processes and systems. While this variation presents challenges, it also presents a huge opportunity. Quality Improvement teaches us to embrace and learn from that variation. What does care center A do that care center B doesn’t? What impact is it having on patient outcomes? Where is the positive deviance (better solution)? How can we spread it? These are the questions that our team asks every day, and embedded in their answers are the reasons we have been so successful at improving clinical outcomes.
I could keep writing. But this post is long enough already. I’ve tried to convey some of the top things that make me so excited to get to work every day. But, the thing that inspires me the most are the stories I hear from our patients and families. They really are heroes – sharing their experiences, ideas, time and energy so that together we can improve the care and outcomes for all kids with IBD.