Background and Needs
In 2006, a consensus for a new paradigm of care for people diagnosed with "intersex" conditions was developed by 50 international experts and patient advocates. Accompanied by a change in nomenclature referring collectively to these conditions as disorders of sex development, or DSD, a new standard of care was proposed focusing on improved quality of life through a patient-centered model of care with an emphasis on an interdisciplinary team approach to health care delivery.
Since no institution has yet to fully implement the new standard of care it falls short of its aim to positively affect the lives of people with DSD and their families. There is a strong need for an organization to assume the role of a convenor of stakeholders across the health care system and DSD communities in order to promote this new standard of care. We want to fill this role at the system-level by becoming the "go-to" organization for resources and information for health care professionals and the community. At the local level, we want to foster this approach by providing consultation and support to interdisciplinary teams striving to deliver the new standard of care to persons with DSD.
We believe the most fruitful way to create a new process is to establish a new organization. During 2007 we engaged in an extensive planning process, resulting in the creation of Accord Alliance in March 2008.
Mission
Our mission is to promote comprehensive and integrated approaches to care that enhance the health and well-being of people and families affected by DSD by fostering collaboration among all stakeholders.
Our Plan
In the two year period ending February 2010, we plan to focus our work in two areas. First, we will assemble information and resources to support understanding and improvements in the care and well-being of persons with DSD and their families. Second, we will partner with a few emerging interdisciplinary healthcare teams and together create the resources they need to successfully implement the new standard of care.
If we are successful, people and families affected by disorders of sex development will consider themselves well informed about DSD, express satisfaction with their participation in health care treatment decisions and their health care experiences, and will be provided with skills and support to promote a positive health-related quality of life and overall well-being.
We'll have solid partnerships with medical and allied health care professional institutions and with community-based (consumer) organizations that share our objectives.
The model of care guiding the interdisciplinary team approach will be refined and revised by working collaboratively with stakeholders and shared in the form of a "manual" or "tool-kit."
Best practices and solutions for barriers to the successful implementation of the model of care will be identified, evaluated, and broadly disseminated.
Over time, interdisciplinary teams will be in place across the country, and recognized as fully operational and successful (as defined by explicit performance evaluation criteria).