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.
President and CEO
American Association of People with Disabilities (AAPD)