The rippling effect of sharing knowledge: How Project ECHO is helping create better access to resources and supports for individuals with disabilities

By Emily Leclerc | Waisman Science Writer

Accessing services, resources, and knowledgeable physicians can be a challenge for the disability community. It is often the case that the resources and information needed to properly care for individuals with disabilities is not widespread, leaving many families lacking access or needing to travel far distances. Finding ways to break down barriers and improve access is crucial to ensuring that everyone has a way to get the care and support they need. This is where Project ECHO comes into play.

Project ECHO logoProject ECHO (Extension for Community Healthcare Outcomes) is a virtual training model that creates a community space for participants to learn and share knowledge. According to the Project ECHO developers, “we call it ‘all teach, all learn.’ ECHO participants engage in a virtual community with their peers where they share support, guidance, and feedback. As a result, our collective understanding of how to disseminate and implement best practices across diverse disciplines continuously improves and expands.”

This model was designed by Sanjeev Arora, MD, gastroenterologist at The University of New Mexico Hospital after encountering a patient that passed from a curable disease because they did not have a specialist in their area capable of treating them and was unable to travel the eight hours to see Arora until it was too late.

ECHO at its roots was designed to help physicians learn from each other’s expertise to ensure that people would not suffer from treatable conditions. The inspiration was to design a low cost, easily accessible method for sharing knowledge to make best practices available to everyone. Now, Project ECHO has expanded beyond that original intention to encompass all kinds of areas and disciplines that can benefit from knowledge sharing. In 2023, more than one million people attended an ECHO session and more than 1,000 ECHO programs were launched across the globe.

Theresa Cassel, MOTR/L, ATP
Theresa Cassel, MOTR/L, ATP

In 2018, the Waisman Center decided to bring in the ECHO model to help break down barriers to specialized care and therapies related to intellectual and developmental disabilities, increase access to information and resources, and build capacity in healthcare providers across Wisconsin to care for individuals with disabilities. “The potential for ECHO is just so wide. There are effects that we probably aren’t even aware we are having,” Theresa Cassel, MOTR/L, ATP, occupational therapist and assistive technology professional in the Communication Aids and Systems Clinic at the Waisman Center says. “ECHO is helping a lot with changing the narrative around disability.”

Since adopting ECHO, the Waisman Center has offered ECHOs on a wide range of topics including autism, augmentative and alternative communication (AAC), genetics, early childhood education, healthcare transition, and more, with new ECHOS continuing to be developed.

Nicole Brys
Nicole Brys

“ECHO started as a way to use technology to increase access to specialist services. We have found it useful for a lot of topics and issues that we are trying to address having to do with access,” says Nicole Brys, MPH, outreach program evaluation specialist at the Waisman Center and a part of Waisman’s Project ECHO coordination team. “It has been a great fit for us to help increase access to services that people need for their families and children.”

Many of Waisman’s ECHOs are targeted specifically to providers and other groups that care for individuals with disabilities to empower them with the knowledge and expertise to provide care, especially if they are located in an area where services and training in disability care can be hard to come by.

“One of our ECHOs’ biggest goals is to increase provider capacity to provide services to families locally. Many providers may hear about autism or the inclusion of individuals with disabilities and it seems like a huge task that they don’t know how to tackle. Maybe no other providers in their area currently offer those services,” says Maryann Rehani, MPH, ECHO project coordinator at Waisman as well as a behavioral specialist in the Waisman Early Childhood Program. “ECHO can help bridge those gaps.”

The ECHO model can help providers from across the state learn, from the comfort of their own home or office, what the best practices are for including and serving individuals with disabilities so that they can provide that specialized care locally. This then increases access to these types of specialized services.

Maryann Rehani, BS, MPH
Maryann Rehani

Regardless of topic, all ECHO sessions follow a specific formula during each meeting and all of them take place virtually. This ensures that anyone can participate no matter where they are physically located. The ECHO model emphasizes case-based learning similar to the style of training physicians utilize during their residencies. An ECHO session will open with introductions of the expert team leading the session and the participants. A short talk, between fifteen and twenty minutes, usually follows where a member of the expert team or a guest will give information on a topic of interest. But the bulk of the meeting is dedicated to the case study. This is where the All Teach, All Learn really comes into play.

Any member of the ECHO session can volunteer to bring a case study before the group. The person bringing the study will then discuss the case. What the situation was, what the problem being addressed was, and either how they went about solving it or how they are trying to find a solution. As the case is presented, the group weighs in, asks questions, offers their advice, experiences, and perspectives.

“Anybody can share a case. People will ask clarifying questions and then give solutions. We come up with solutions together. And it has been really helpful for people to be able to then apply other people’s suggestions and things you maybe hadn’t thought of,” Cassel says. “It’s like groupthink but positive.”

Martha Walter, PhD
Martha Walter, PhD

Through the case studies, participants learn from the expert team and fellow participants and can bring that knowledge back to their own spaces. The expert team then also has the opportunity to learn from the participants. Project ECHO creates a revolving door of knowledge, every member learning from the others through the lens of a topic and particular case studies. “I have genuinely learned something from every case study I have listened to,” says Martha Walter, PhD, a psychologist at the Waisman Center and facilitator and hub member for a recently wrapped up ECHO on autism diagnosis. “We learn a ton too about individual providers who participate, the work they’re doing, the needs of the families they’re seeing, and what they need in terms of professional development. It has been such a wonderful experience.”

The ECHO model provides the Waisman Center with a research-backed method for distributing the wealth of knowledge and expertise contained at the center. Due to its virtual nature, participants from across Wisconsin and beyond can access the Waisman Center’s information and resources. On the flip side, ECHO sessions give Waisman Center staff the important opportunity to learn from other practitioners and participants. Listening to the needs of the community and understanding the barriers and difficult access points are crucial to improving services and resources across the state.

“The Waisman Center has access to a lot of people who work on evidence-based strategies so we have this nice collection of people who work across the state of Wisconsin helping community members to improve practice,” says Kate Szidon, MS, outreach program manager at Waisman and the coordinator of the Early Childhood Education ECHO. “Waisman is a really nice hub for ECHO. But we also have good relationships with community entities and those partnerships make a difference in the kinds of services we are able to offer.”

Kate Szidon
Kate Szidon

Participants in the ECHO programs offered at the Waisman Center consistently say that the information and experience provided were incredibly influential and helpful. On several occasions, participants reached back out to the expert teams to have them come present at the participants’ places of work so their colleagues could benefit from the information. Walter has been invited to several places to speak and Rehani has had several participants request members of the expert team come to visit. For example, Caitlin Regner, MD, helped to institute systemic changes at the clinic where she works after attending an ECHO Autism at Waisman.

Regner is a family medicine physician who works at Access Community Health Centers. Last year, she received an email from UW-Madison on continuing education opportunities and saw the Waisman Center’s ECHO Autism listed. “I was excited to be able to join. Within my practice I see a very young population and have seen plenty of children where I’ve had a concern about autism or other behavioral or developmental concerns. I thought it would be helpful to get more resources, especially for families,” Regner says.

She found the ECHO to be an excellent experience and specifically appreciated the format of the sessions. Having each meeting be centered on bite-sized topics inside of the larger umbrella of autism helped her learn better and more deeply. It also allowed for continuous reinforcement as the topics were linked together over the course of the ECHO. Regner says the case-based learning aspect was incredibly helpful as well.

Caitlin Regner, MD
Caitlin Regner, MD

“I really appreciated being able to bring my own cases and hearing others’ perspectives, feedback, and ideas about how to help kids and families. There were even a couple of families that I was able to connect more closely to social work or an expert within the Waisman Center as a result of conversations,” Regner says.

After completing the ECHO series, Regner started to notice that there was a disconnect in the referral process for behavioral concerns in the clinic she works in. “People I would refer for testing didn’t always get there. Something in the link of events was broken,” Regner says. She helped bring together a large meeting of the entire clinic to address the issue.

Regner and the clinic were able to better streamline their screening, documentation, and referrals and implement standard processes to ensure that individuals with behavioral concerns were not falling through the cracks. “We optimized the way we managed those referrals to make sure that families with concerns would have extra support to help them navigate the process of seeing specialty care and undergoing a diagnosis. And also to help them receive therapies while they wait for a formal diagnosis,” Regner says.

After having such a positive experience, Regner decided to attend a second ECHO series on healthcare transition that recently finished up.

“I just appreciate that work is being done to spread the word,” Regner says, “and have more professionals feel equipped to meet the needs of individuals with disabilities.”