Preparing this symposium was an excellent way for us to think deeply about who we are and want to be, what we have achieved, and how we will reach our goal to foster resilience in the midst of illness. Our list of short-term goals is well on the way to being accomplished by 2021. These goals are to: 1) complete translation of measures into Japanese; 2) complete and evaluate the RedCap database; 3) complete recruitment and data collection within each country; 4) analyze the RIM psychometric properties and publish findings; 5) evaluate the RIM Measurement and Structural Equation Model for each country and publish outcomes; 6) compare the RIM outcomes across Asian countries and publish outcomes; 7) compare similarities and differences in the ways RIM works in Western and Eastern cultures and publish; 8) let the world know about our work by publishing papers on our research and also on development of the AREA Cooperative Group; 8) obtain funding to support development and maintenance of the web-based data base; 9) establish a quality assurance monitoring system. We know this list is not complete, yet we also know it is important to stay focused. Within our Executive Committee it will be important for us to continue to have time for open dialogue about our current and future work.
Our longer-term research goals for 2021-2024 are to develop and test culturally appropriate interventions for AYA with cancer across collaborating countries and publish. We already have several scientists and clinicians who are interested in developing RIM interventions for children, AYA, and families with other chronic conditions. Because RIM was initially developed with children with a variety of chronic conditions (i.e., cancer, cystic fibrosis, asthma, and cardiac conditions), we already have these measures adapted for each disease in English and plan to extend our work to other chronic illnesses. As the work in each country moves forward, we plan to develop resilience training programs to foster young scientists and clinicians to engage in developing, evaluating, and implementing RIM guided interventions. By the end of 2024, our goal is to be ready to begin globally expanding use of RIM.
In addition to our research goals, we generated a "must-do" list of other goals/activities we know must occur to be successful—some need to occur sooner and some later. We will present our efforts and progress formalizing the AREA Cooperative Group as a sustainable entity. These efforts include documenting our philosophy and mission statement, identifying and attaining sustainable sources of funding within countries and for the ongoing work of the AREA Cooperative Group, deciding on and establishing an organizational structure (e.g. Non-profit Organization, Foundation, Association, a Center for Resilience Enhancement). To sustain our work, we will need to: partner with universities and other entities; establish guidelines, strategies and timelines for adding countries in Asia and then in other parts of our world; extend our membership to include a wider interprofessional network of scientists and clinicians. We are already beginning partnerships with physicians, social workers, psychologists, and others to conduct studies in our four Asian countries. We also will need to obtain legal advice to establish formal agreements (e.g. intellectual property, data use, and copyright agreements) and formalize policies and processes for timely, meaningful and consistent dissemination of AREA Cooperative Group project processes and outcomes (e.g. dissemination and authorship guidelines).
We also recognize we have significant challenges. Some challenges are to establish sustainable resources over time, implement and monitor best practices to assure sustained enthusiasm and effort, assure we keep pace with communication technologies. Lastly and most importantly, we need to assure that we consistently focus on our mission to globally foster resilience in children, adolescents, and young adults with chronic illness by developing efficacious RIM interventions and implementing them into clinical practice.
The opportunity to prepare this a symposium for STTI provided our Executive Committee with a perfect and timely opportunity to think about the current and future work of the AREA Cooperative Group. Our work is just beginning, and we have much to learn. During the last part of this session, we plan to engage our audience in dialogue about this work and seek their own knowledge and expertise on our plans.