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Pages 1-6

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From page 1...
... As part of its information-gathering activities, the committee organized three workshops to collect input from stakeholders on the PCOR data infrastructure. This report, the first in a series of three interim reports, summarizes the discussion and committee conclusions from the first workshop, focused on looking ahead at data user needs over the next decade.
From page 2...
... Opportunities exist for increasing the utility of the data infrastructure by carefully considering the multiple uses to which the data might be applied. Researchers experience barriers that limit their ability to access data available in databases, which range from databases that can be considered a part of the PCOR data infrastructure to those owned by private companies.
From page 3...
... The workshop also made it clear that the data available do not capture complexities that are necessary to understand how people's characteristics and experiences influence health outcomes. Speakers at the workshop identified several potential ways of capturing data that reflect these complexities, emphasizing the need to build flexibility into the data collection systems to allow them to adapt to evolving terminologies and technologies
From page 4...
... A robust data infrastructure builds on the strengths of what is available today and has the flexibility to adapt, both as measures and terminologies become obsolete and as new technologies emerge. PATIENT DATA NEEDS AND ENGAGEMENT Too often, the data available for PCOR are not focused on the issues that are truly important to patients and that would enable them to find answers to their questions about treatment options and potential outcomes.
From page 5...
... FOCUS ON THE PERSON AS A WHOLE The input received from workshop participants made it clear that limiting the focus to the patient limits not only thinking about the data but also the outcomes and impacts that matter to people in general. CONCLUSION 4-1: Broadening the focus from the patient to the person more generally would enable a more comprehensive approach to the data infrastructure and a better understanding of the outcomes and impacts that matter to people.


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