 | In a letter to the Patient-Centered Outcomes Research Institute (PCORI), the Partnership to Improve Patient Care (PIPC) offered feedback on PCORI's draft report entitled "Stakeholder Views on Components of 'Patient-Centered Value' in Health and Health Care." |
While the letter applauds PCORI's consistent emphasis on including the patient voice in every step of research, PIPC Chair Tony Coelho expressed concerns that PCORI included disability-adjusted life years (DALYs) as an attribute of life and social impacts per the feedback of some clinicians and payers. As PCORI advances this work, PIPC' urges consideration of the differences among patients based on their condition or disease, age, social determinants of health, etc. so that researchers are prioritizing the collection of data on attributes that matter to the patients in question.
"The disability community has long held concerns about the use of DALYs, similar to the quality-adjusted life year (QALY), due to their use to measure the magnitude, burden, or causes of disability," wrote Chair Coelho. "Like QALYs, the DALY utilizes weights indicating that a condition is perceived as being more equivalent to death than to a state of health," wrote Chair Coelho."
"The disability community has long held concerns about the use of DALYs, similar to the quality-adjusted life year (QALY), due to their use to measure the magnitude, burden, or causes of disability," wrote Chair Coelho. "Like QALYs, the DALY utilizes weights indicating that a condition is perceived as being more equivalent to death than to a state of health," wrote Chair Coelho."
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