Systems Change, AYA Program by AYA Program

By Simon Davies, Advocate

“The doctors told me ‘We don’t know how to treat adult organs, we know how to treat kid organs — and you’re not a kid!‘: Anna,18, treated in a pediatric hospital.

“They told me ‘The last person I saw had grey hair and the next person I see will have grey hair. You’re so young!“: Drew, 18, treated in an adult hospital.

Two young people. Same age. Diverse experiences. One thing in common: they didn’t fit in and their professional teams were challenged by having to treat them. Sadly, this is not uncommon.

So how do you go about changing institutional structures, systems and practices that have evolved in silos?

Three years after Teen Cancer America was formed, there are now specialist facilities and programs for teenagers and young adults with cancer in a number of cities. So far, more than 60 hospitals and health systems in almost every state of America have approached us about developing an AYA service. They include academic cancer centers, pediatric hospitals, community hospitals and community health practices. Achieving a comprehensive program is challenging, and Teen Cancer America advises on a wide range of issues, providing self-assessment tools, guidance documents and consultancy support throughout the process.

There are, without a doubt, many challenges to starting an AYA service, not the least of which are fear of change, institutional inertia and overwhelming bureaucracy. Many institutions have to fight a reflexive denial response when told that they could or should do things differently, and it requires champions with passion and open minds to drive change internally.

That said, most of the challenges to starting a service are neither unique nor original, and have been overcome by others. In working with a diverse group of organizations, we have developed some key learnings on how to successfully achieve an AYA program.

First, it all begins with a vision. This may be a single-site model where structure and geography enable it. Or two (in some cases more) sites that focus on teens in pediatric and young people in adult oncology. The vision will determine the direction of travel. There may be phases because of the local challenges, but don’t lose sight of the vision.

On the business end of the deal, leadership will require a business plan before any investment. Be sure to include projected income through new referrals. Stress the marketing appeal of the hospital being at the forefront of a new, innovative program. Plans should address both facilities and programmatic changes. Try to incorporate plans to develop research that can attract funding and enhance reputation.

Other key learnings include:

Communication and collaboration between pediatric and medical oncology is the key. It is essential dialogue and must be sustained with identified champions.

Leadership support is needed to give status to formal planning and to receive internal reports and recommendations.

A review of the data on referral and patient pathways is required to clarify where and by whom these patients are being treated.

Differences and inequalities must be highlighted: between pediatrics and adult oncology; between cancer centers and community hospitals.

Strengths and weaknesses must be identified to build on best practice and improve deficiencies.

Engagement of the hospital’s development teams from the beginning will better equip them for raising external funds if needed.

Last but by no means least, it is critical to involve the ‘Drews’ and the ‘Annas’ — the patients themselves — as advocates throughout.

Support them. Even pay them or, at the very least, remunerate their expenses. You are creating the program for them; so it only makes sense to find out what they want and to appropriately value that input.

One of the most rewarding aspects of our work is making cross-country connections. As we develop more programs, we have the benefit of knowing the variety of structures and systems, as well as the stages and the challenges teams are facing. We are building a library of business plans, scoping documents and job descriptions that we share. This ‘cross pollination’ not only speeds up the process, it reduces the isolation of the teams and enhances the field. We continually learn new and more efficient ways of problem-solving and improving best practices. More recently, we have begun to address professional education, which we hope will continue to advance the field and improve care in these new services cropping up all over.

This ‘movement’ is on a roll — lets keep up the momentum!

Dr. Simon Davies is the Executive Director of Teen Cancer America, based in Los Angeles, California.

Originally published at criticalmass.org on April 8, 2016.