Accord Alliance’s 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.
Standard of Care
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 collectively referring to these conditions as “disorders of sex development” (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.
There are a number of institutions that now follow this team-based approach, but there remains a strong need for an organization like Accord Alliance to assume the role of a convener of stakeholders across the health care system and DSD communities in order to continue to promote and perfect this standard of care. We continue to fill this role by serving as the “go-to” organization for resources and information for health care providers, patients and families, other stakeholder communities, and the general public. At the local level, we are fostering this approach by providing consultation and support to interdisciplinary teams striving to deliver the standard of care to persons with DSD.
*The term “disorders of sex development” (DSD) is used to refer exclusively to a category of medical conditions described in the 2006 Consensus Statement; in this context, DSD carries no implications for the identity of the person. Some people with these conditions apply “intersex” to themselves as an identity label. In general, we adopt the principle of “people-first” language, which refers to the person first, and the associated medical condition second, for example “a person with a DSD.” Nevertheless, some believe the first “D” (disorder) in “DSD” necessarily implies the need for medical or surgical intervention. For this reason, we adopt the more neutral term “differences of sex development” which “avoids equating biology with identity, and replaces a word that offends and worries some with one that is more neutral.”1
1 Hollenbach AD, Eckstrand KL, Dreger A, editors. Implementing Curricular and Institutional Climate Changes to Improve Health Care for Individuals Who Are LGBT, Gender Nonconforming, or Born with DSD: A Resource for Medical Educators. Washington, DC: Association of American Medical Colleges; 2014.
During our initial two years, we focused our efforts in two important areas. First, we created an on-line repository of information and resources to support understanding and improvements in the care and well-being of persons with DSD and their families. Second, we partnered with emerging interdisciplinary healthcare teams and worked together to create the resources they need to successfully implement the standard of care.
As we move forward and grow, for us to be successful:
- People and families affected by DSD will consider themselves well informed about DSD; they will have the skills and support they require to promote a positive health-related quality of life and overall well-being; and they will express satisfaction with their participation in treatment decisions and their overall healthcare experience.
- Accord Alliance will have forged solid partnerships with medical and allied healthcare professional institutions and with community-based (consumer) organizations that share our objectives.
- A model of care to guide the interdisciplinary team approach and family-centered decision making will be developed by working collaboratively with stakeholders and will be widely shared in the form of a “decision-support tool.”
- 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, effective, and successful.
We are a hosted project of the Tides Center, which partners with individuals, groups, and funders to implement programs that accelerate positive social change. Tides Center is a tax-exempt 501c3 organization; donations to Accord Alliance are tax deductible.
We received a generous start-up grant ($305,000 for 2008-2009) from The California Endowment, whose mission is to expand access to affordable, quality health care for under-served individuals and communities, and to promote fundamental improvements in the health status of all Californians.
We are also grateful for more than one hundred of you who have generously given to support our programs.