In the many years that CNF has been working in the child neurology community, one of the main issues that we hear time and again, is that there must be a better way for patients and physicians to connect with each other and make better use of the short time they have together during visits. Parents are often stressed and looking for answers to a long list of questions. Physicians have limited time with each patient and might be trying to protect patients and families from negative or discouraging information. Caregivers, patients, and physicians can have different goals for care, and all this combined leads to frustration.
In 2018, CNF began working with Digital Health Solutions to start addressing this issue. We have an opportunity to use efficient and innovative technology to facilitate communication between patients, care givers, and providers. This is where CHICA comes in.
What is CHICA?
CHICA stands for Child Health Improvement through Computer Automation. It’s a web-based clinical decision support system that works with a physician’s current Electronic Health Record System to help coordinate patient visits. When the patient enters the waiting room, they fill out a normal digital intake form, but CHICA asks additional questions that will then be put into an algorithm. Based on the patient and caregiver responses, the algorithm then populates questions and prompts on the provider’s end, so that both caregiver and provider are on the same page from the moment the patient enters the doctor’s office. CHICA also suggests patient educational handouts based on vetted clinical guidelines and measures. This system provides an efficient and minimally invasive way to prompt physicians about evidence-based processes specifically tailored to each patient’s needs.
In 2018, with the support of Greenwich Biosciences, DHS and CNF put CHICA to the test in child neurology by creating a CHICA-SUDEP module. SUDEP is Sudden Unexpected Death in Epilepsy. When we surveyed families, we learned that, “a majority of families wanted to discuss their child’s risk of SUDEP with their pediatric neurologists, but instead were more likely to go to a peer or the internet. We learned that historically, providers were less willing to discuss these topics due to their worry of causing increased anxiety for the caregiver,” said Amy Brin, CNF Executive Director/CEO. “Clearly, these were missed opportunities.”
In reality this conversation was only happening 20% of the time. With our 2018 pilot project, we saw in increase from 22% to 50% in just a 6-week period. This type of change is unprecedented in SUDEP.
Now we want to bring the CHICA model to the rest of child neurology.
What is CHICA-CN?
The Child Neurology Foundation and Digital Health Solutions (DHS) are working together over the next three years to build a set of child neurology modules to work with CHICA, called CHICA-CN (Child Health Improvement through Computer Automation System – Child Neurology).
Within the healthcare system, physicians work with evidence-based clinical guidelines that provide them with guidance for how to treat specific issues and conditions. For the sets of clinical guidelines that already exist within child neurology, we will build algorithms that work within CHICA to coordinate visits between families and physicians. In clinical areas where a guideline doesn’t already exist; the expert panel will assess if there is enough supporting literature to create a clinical consensus algorithm to address a gap in care.
Why is CHICA-CN being built?
CHICA has been used in primary care clinics in the Indianapolis area for 15 years and has produced incredibly successful results. Based on these results, and the success that we experienced with the CHICA-SUDEP trial in 2018, we can have an incredible impact on patient care in child neurology. The Child Neurology Foundation is uniquely positioned at the intersection between patients and families, physicians, researchers, and industry partners, to bring these groups together and drive a project like this forward. We like to think of CHICA-CN as the child neurology moonshot. It will truly be a gamechanger in the way that physicians and families collaborate on care for our kids.
What is the project timeline?
Over the next three years, CNF will work to build, implement, and evaluate the full collection of CHICA CN modules. Once we’ve evaluated our results, we will begin to explore wider implementation across the larger child neurology community.
- Review literature of all existing guidelines and measures related to child neurology
- An expert panel will be convened to the literature and select content that will help us to build to CHICA-CN modules
- Create patient and family handouts to work together with CHICA-CN system
- Code the CHICA-CN modules with the information that we gathered during our literature review
- Integrate CHICA with Epic and Cerner (the two electronic health records systems most commonly used at large institutions)
- Integrate CHICA health questionnaire into the patient intake process
- Select medical practices to be pilot research sites for CHICA-CN
- Train these practices on how to effectively use CHICA-CN
- Assess results collected via CHICA and get feedback from families and physicians
- Make improvements based on the results from our pilot site research
Who is involved in the project?
The Child Neurology Foundation and the CHICA-CN vendor (DHS) have put together an expert panel to ensure that the product is evidence based. A list of expert panel participants is below.
Anup Patel, MD
Nationwide Children’s Hospital
Ann Tilton, MD
Children’s Hospital New Orleans
Amy Bennett, JD
American Academy of Neurology
AAN Quality Expert
Chris Jackman, MD
Cris Victorio, MD
Akron Children’s Hospital
Lori Billinghurst, MD
Children’s Hospital of Philadelphia
Scott Demarest, MD
University of Colorado
Larry Walsh, MD
CHICA-CN would also not be possible without funding from our generous donors.
Visionary level donors for CHICA-CN received two non-voting spots to be a part of all expert panel activities.
If you would like to talk with CNF about opportunities to partner on our CHICA-CN initiative, please reach out by email to firstname.lastname@example.org