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The PIPC Blog

PIPC Patient Blog: Mark Perriello

1/21/2014

 
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The American Association of People with Disabilities is a founding member of the Partnership to Improve Patient Care (PIPC), and continue to support the patient-centered principles that drive PIPC’s work.  We were pleased to see the introduction of “The Patient-Centered Outcomes Research Act of 2009” and even more pleased to see the Institute finally created by Congress.  The AAPD supports the Patient-Centered Outcomes Research Institute’s (PCORI) patient-centered approach to comparative effectiveness research (CER) and the important provisions written into the law which will ensure a continued focus on patient and provider needs and better healthcare quality.  As stated so eloquently by PIPC’s Chairman Tony Coelho, we also recognize that access to treatment options is imperative to fulfill the promise of patient-centered CER to improve the quality of health care.

The American Association of People with Disabilities is the nation's largest disability rights organization. We promote equal opportunity, economic power, independent living, and political participation for people with disabilities. Our members, including people with disabilities and our family, friends, and supporters, represent a powerful force for change. AAPD was founded in 1995 to help unite the diverse community of people with disabilities, including their family, friends and supporters, and to be a national voice for change in implementing the goals of the Americans with Disabilities Act (ADA). 
​
We believe patient-centered research has the potential to ensure that people with disabilities and their doctors will be able to receive the best care and treatment information possible, while guaranteeing that final healthcare decisions continue to rest between the patient and doctor.  As a PIPC Steering Committee member, we remain engaged in PCORI’s work to carry out the vision shared by its stakeholders and Congress, and in the broader landscape of patient-centered research and its implementation into practice. 

On June 10, 2013, we held a roundtable of people with disabilities to develop consensus recommendation for PCORI on how they could best engage our community, and what areas of research are priorities for our community.  We intend to continue that collaboration with PCORI, and see it as a positive model for meaningful engagement that could lead to research that makes a real difference in people’s lives. 

Many of AAPD’s members have been able to make tremendous strides towards independence and improved quality of life thanks to innovation and medical discovery.  While, in terms of dollars, this groundbreaking work can sometimes be considered expensive, the freedom and hope it brings those who benefit – and their loved ones – is of tremendous value.  We cannot allow this key component of America’s healthcare sector to be marginalized.   Therefore, we are proud to serve on the PIPC Steering Committee and look forward to continued application of PIPC’s patient-centered principles in the generation of research, and in the use of that research to improve healthcare decisions. 

Sincerely, 
Mark Perriello
President and CEO
American Association of People with Disabilities (AAPD)

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