AAKP Launches First of Kidney Program for Kidney Community

TAMPA, FLA – The nation’s first awards for excellence in the fields of social media education and advocacy as well as patient engagement and advocacy designed for leaders in the kidney disease community were announced by the American Association of Kidney Patients (AAKP).

Earlier this summer, AAKP announced new national awards designed to recognize the expanded power and impact social media, patient engagement and patient advocacy are having on public policy and health care delivery.  Through these awards, AAKP plans to recognize and expand the number of key influencers working to inform all Americans about kidney disease, individuals and institutions advancing the health interests of kidney patients and patient leaders who mobilize fellow kidney patients to make an impact on future health outcomes.  The awards are an initiative under the AAKP Center for Patient Engagement and Advocacy, a new center dedicated to providing online advocacy tools, social media training, certification for patient advocates and links to federal agency patient engagement opportunities.

“Social media and smart phones have fundamentally transformed communications within American culture, politics and healthcare delivery.  Today, nearly every kidney patient has the technology, via their smart phones and ipads, to share their compelling personal story and to impact law and regulations 24 hours a day, 365 days a year” said Paul T. Conway, president of AAKP and a renal transplant patient. “AAKP was directly involved in the original Congressional authorization of the End Stage Renal Disease program and we are proud of our heritage of elevating the patient voice among decision-makers including providers, Federal regulators or Congressional offices.  We are committed to recognizing the people and institutions that help those who suffer from kidney disease and we will continue to train kidney patients on the issues and social media tactics necessary to ensure their voices are included in the policy process.”  Conway is the former Chief of Staff of the United States Department of Labor and a veteran of multiple national social media and web-based issue campaigns designed to engage and mobilize stakeholders to more actively participate in the policy process.

The awards were presented at the 41st annual AAKP National Patient Meeting held from September 25-27 at the Nashville Marriott Airport Hotel.    Hundreds of patients and care-givers attended the event which featured speakers from the Food & Drug Administration (FDA), the Centers for Medicare and Medicaid Services (CMS), Vanderbilt University Medical School and social media skill training for patients and family.

The Award Winners:

National Social Media Education and Advocacy Awards

• James Myers (www.facebook.com/jamesmyers3) is an AAKP Member and polycystic kidney disease (PKD) patient who was the very first person to be chosen for any of the new AAKP awards.  He was awarded the Social Media Education and Advocacy Award in the category of patient advocate.  Mr. Myers has been a blogger for 10 years, sharing his story and using social media to digitally engage audiences by sharing insights and experiences he hopes will help foster a digital community which supports kidney patients, families and the healthcare professionals who care for them.  He has been actively involved with petition drives through Change.org aimed at increasing national awareness of kidney disease.  Although Mr. Meyers could not attend the AAKP National Patient Conference, his remarks can be found athttps://vimeo.com/140550061.

• The National Kidney Foundation (www.kidney.org) received the first Social Media Education & Advocacy Award in the organization category.  The award recognizes the foundation’s Everybody Pees campaign which is a humorous and educational campaign to encourage people to take care of their kidneys. (www.youtube.com/watch?v=y165Gv_SBd4)

National Patient Engagement and Advocacy Awards:

• Dr. Carolyn Neuland, PhD – Chief of the Renal Devices Branch.  She was awarded the inaugural AAKP Patient Advocate and Engagement award for a public official – awarded for outstanding service to the kidney patient community and for defending patient safety and fully representing the patient voice and desire for independence in decisions regarding life-saving technologies. 
• ESRD National Coordinating Center (NCC) (http://esrdncc.org/) received the Patient Engagement and Advocacy Award in the category of patient centered organization. The award recognized the organization’s dedication and commitment of the patients that work tirelessly through their groups to promote patient engagement, education and empowerment through active involvement in care.
• Sam Pederson (www.asn online.org/about/bio.aspx?ID=1522984&title=KHI+Board+of+Directors) awarded a Patient Engagement and Advocacy Award for individual patient advocate in recognition of his tireless advocacy on behalf of his fellow patients.  As a patient, he has demonstrated the courage to manage kidney disease through dialysis and two kidney transplants, and he did this while simultaneously serving as the President of AAKPand as a founding board member of the Kidney Health Initiative.

AAKP would like to thank its 2015 collaborators for their support and partnership, including Vanderbilt Center for Kidney Disease, the Tennessee Kidney Foundation and End-Stage Renal Disease Network 8, Inc., Home Dialyzors United and TransplantFirst Academy.

AAKP is America’s oldest and largest patient led kidney advocacy organization.  AAKP had a direct role in the 1972 passage of legislative by the United States Congress which led to the creation of the End Stage Renal Disease (ESRD) program. For more than 45 years, AAKP has been dedicated to improving the quality of life of kidney patients through education, advocacy and the fostering of patient communities. The programs offered by AAKP inform and inspire patients and their families to better understand their condition, adjust more readily to their circumstances, and assume more normal, productive lives in their communities.