Above (l-r): Kent Bressler, AAKP Board Member and Ambassador (TX) and David Rodriguez, AAKP Board Member and Ambassador (TX)
A patient-centered strategic capacity initiative, designed to ensure the patient voice impacts every level of policy creation and decision-making in the kidney disease space has exceeded all initial expectations.
When the American Association of Kidney Patients (AAKP) established its Ambassador Program in 2017, the goal was to support its revised national strategy with a new capacity of engaged, knowledgeable volunteers representing the interests of patients in all 50 states by early 2019. AAKP is the oldest and largest independent kidney patient education and advocacy organization and is already in midst of celebrating its 50th Anniversary year in 2019.
But Executive Director Diana Clynes said AAKP now has expanded its sights even higher to meet a growing international demand for trained and effective patient advocates.
“Given how well it has been received among patients and the impact they are having at the local, state and national levels, we believe we will be able to realize our strategic vision of one Ambassador in nearly every Congressional district by 2020,” she said.
“Currently, in addition to the 47 states represented, we also have Ambassadors in Washington, DC and our first international Ambassador in Canada.” As the demand for innovation and access to evolving therapies increases in other countries, kidney patients overseas seek guidance and advice on how to organize from their American counterparts.
The AAKP’s 100 Ambassadors are the group’s “most engaged volunteers” and educators. They are patients and family members who are experts in the diagnosis, treatment and care of kidney disease and who are trained and experienced enough to brief policy-makers on the implications of different issues among the kidney patient community.
“Ambassadors utilize their personal experiences and professional skills to contribute to both the AAKP mission and principles and the larger kidney community based on their desire to serve a cause larger than themselves,” explained Diana.
“They are a substantive and knowledgeable front-line extension of the AAKP team. They attend national kidney meetings and events in their communities, representing AAKP and the larger kidney patient population.”
“If there is a major policy discussion or initiative impacting kidney patients, you can count on the fact that an AAKP Ambassador, along with our leadership, is or will be fully engaged.”
To date, this has included issues considered by federal agencies, Capitol Hill and the White House, and also at a local level.
Said Diana: “Because AAKP is a fully independent, informative and trusted entity among national policy leaders and the kidney community, our Ambassadors are regularly invited to join business and nonprofit advisory groups, federal Technical Expert Panels, and state and national coalitions to ensure the true independent patient and family voice is heard in all research, regulatory, legislative and medical matters.”
“AAKP is a staunch supporter of the principle of patient choice in healthcare and for removal of policy barriers to innovation in the kidney space. Ambassadors provide the patient and family perspective to highlight the importance of patients as intelligent consumers of their own health care and for moving forward and changing the status quo in kidney care, especially dialysis.”
AAKP Ambassadors, whose effectiveness on social media is a part of their selection, are guided by a key AAKP professional staff member and receive a bimonthly newsletter to keep them abreast of the issues. They also take part in periodic webinars on issues such as policy, legislation and upcoming events.
Asked about volunteer recruitment, Diana said patients and family members often approach the organization looking for ways to help. Current Ambassadors are encouraged to spread the word and staff also send recruitment appeals via its database and social media channels.
“Ambassadors are involved with AAKP because we are the oldest and largest independent voice of the kidney patient. Our voice is strong, we are highly regarded in the community, and we are always at the table when decisions that impact kidney patients and their families are made.”
“They know the work they do is not just a benefit for themselves but for those individuals who do not have the ability to advocate for themselves as well as those yet to be diagnosed,” she added.