This spring, Teresa (a self-proclaimed dataphile) led a breakout session at our Live Online Community Conference where she and Dr. Howard Baron (ICN physician leader) talked openly about data entry failure at their center with the hope that others could learn from their experience.

“A smart person learns from his mistakes, but a truly wise person learns from the mistakes of others.” -Walt Disney

Teresa opened the presentation sharing the above quote to illustrate the driving force behind why she and her team wanted to talk about failure with the ImproveCareNow community - because it is wise to learn from the mistakes others have made.

“I was tickled that the presentation got accepted for the meeting because I think it just underscores how important sticking with the process and your data is.” – Howard Baron, MD

Later in the talk, Teresa, who has a dual role as both a nurse practitioner and ICN coordinator at Pediatric Gastroenterology & Nutrition Associates (PGNA) in Las Vegas, recounted the moment when she realized just how bad things had gotten; she had discovered there was a month where her team’s data entry bottomed out at 0%. With a smile on her face, Teresa recalled double-and-triple checking to be sure the figure was correct (it was) and how it felt both embarrassing to share it but also important. It felt important because failing at data entry could easily happen to anyone and if sharing openly helped someone else avoid failure or recover more quickly from one then it would be 100% worth it 💚💙

Why are data & data entry so important?

High quality data, and accurate and timely data entry is a foundation of the work we do in ImproveCareNow. ICN co-founder, Dr. Richard Colletti once said if you don't measure it, you can't manage it. Data is key to ICN teams' ability to monitor and continuously improve outcomes for young people with IBD. Without timely, accurate and quality data entered into the Outcomes registry, some of the value of participating in the ICN Network can be diminished for teams, such as dynamic Pre-Visit Planning and Population Management tools (which enable ICN teams to track and optimize care for their patients with IBD) and the ability to match patients with available research studies.

If data & data entry are so important, how come failures happen?

In a perfect world, there would be total buy-in about the importance of and plenty of time for data collection and entry. The reality is that there are many ways that data can fall by the wayside. Teresa walked us through some things that contributed to the ultimate breakdown of reliable data entry at her center, including staffing changes, increasing IBD population and needs, lack of team awareness and buy-in, a disconnect from network webinars & resources, demands of study recruitment, and a registry transition that changed workflows.

Another reality is that failure is usually not the result of a single, catastrophic event that significantly changes things. In other words, failure can sneak up on us because it is the culmination of many small, incremental changes that can be easily overlooked. 

How do you come back after failure?

Just as small incremental changes can lead to failure, they can also lead to improvement.

"I was really proud of Teresa and Nora, who independently came to this discovery and a way to correct it and really used quality improvement science in the way it's supposed to be used in order to try and improve our process. It made me happy that we are an inclusive team and that we’re all working together on this.” – Dr. Baron

Having shared with the PGNA team the extent of their data disarray, Teresa and Nora began, with support from Dr. Baron, making a plan to fix it. The first step was a complete data overhaul. Teresa shared that this part of the recovery process was the most time-intensive, but it was also essential. With their data set clean and current, they focused on restarting their use of monthly data trackers and hospitalization and registerable population submissions to improve data accountability. It is important to note that while Teresa and Nora were championing this data recovery work, a key to their success was bringing everyone on the PGNA team together to talk about their data and establish buy-in and support. Together, they identified and fixed gaps in their data tools, and used bi-weekly PDSAs to figure out clinic work-flows that engaged everyone in the successful collection of data at every visit and reliable data entry into the registry.

Here are some of the data improvements the PGNA team implemented:

  • Implementing bi-weekly Pre-Visit Planning to identify upcoming patients and attach data collection forms to the front of those charts 
  • Committing to entering data collection forms daily (Teresa does this and she says it takes her 5 minutes at the beginning or end of the work day)
  • Ensuring at least one PGNA team member joins required monthly ICN Learning Lab webinars for peer-to-peer learning and collaboration
  • Engaging on the ICN HUB with colleagues and utilizing the data resources available there
  • Celebrating accomplishments

To err is human. Mistakes and failures are going to happen. Therefore, the goal is not to stop failing. Instead, we should aim to normalize and understand that failure is acceptable and expected. And that we should all try to foster an environment where it feels safe to admit that a failure has occurred and where there are resources and support to help us learn together and find a way forward. 

Thank you for sharing seamlessly, PGNA team! We have learned a lot from you.

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ImproveCareNow exists to transform the health, care and costs for all children and adolescents with Crohn's disease and ulcerative colitis (Inflammatory Bowel Disease or IBD). To do this ICN has created an inclusive, transparent and collaborative community where patients, families, clinicians, researchers, improvers, collaborators and friends are all empowered to learn, share and continuously improve, bringing about more reliable, proactive IBD care and healthier children and youth. We welcome your involvement:
💙 young patients (14+) with IBD can join the Patient Advisory Council - "Being part of the PAC helps me remember that I'm not alone in this journey." - Rhea 
💚 caregivers of young people with IBD can join the Parent/Family Advisory Council "I was astounded by the instant bond established with parents I had never met. Every conversation provided me with strength. It ignited another purpose in my life." - Maria
💙 make a tax-deductible donation to support ImproveCareNow - "As a 501c3 non-profit, ImproveCareNow is proud to use every dollar donated to advance our mission of improving the health and care of children and adolescents with IBD." - Kristin Howe, Executive Director
💚 stay #InTheLOOP with IBD stories on the ICN blog "Sharing stories and experiences is affirming and validating. Our stories reach others and they help, which is the most wonderful part of being involved with ImproveCareNow." - Quint 
💙 download & use free, co-produced IBD resources - "Physical resources provide patients with actions that we can take toward bettering our quality of life, as well as our current and future care." - Quint
💚 join our CIRCLE -"Resources we found in CIRCLE eNews do not just focus on physical health, but also on critical areas like social-emotional needs, nutrition, back-to-school planning and mindfulness. These are valuable tools for my son to remain healthy." - Lisa 

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