Patient-Centered Core Impact Sets: What They are and Why We Need Them

A quote attributed to Mark Twain states, “What gets us into trouble is not what we don’t know. It’s what we know for sure that just ain’t so.” The growing focus on patient centricity has revealed a misalignment between what patients report as important to them about their disease and/or treatment, a...

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Bibliographic Details
Published in:The patient : patient-centered outcomes research Vol. 15; no. 6; pp. 619 - 627
Main Authors: Perfetto, Eleanor M., Oehrlein, Elisabeth M., Love, T. Rosie, Schoch, Silke, Kennedy, Annie, Bright, Jennifer
Format: Journal Article
Language:English
Published: Cham Springer International Publishing 01.11.2022
Springer Nature B.V
Subjects:
Biomarkers
Caregivers
Clinical outcomes
Collaboration
Decision making
Disease prevention
Health Administration
Health Economics
Health technology assessment
Leading
Leading Article
Medicine
Medicine & Public Health
Patient-centered care
Patients
Pharmacoeconomics and Health Outcomes
Product development
Public Health
Quality of Life Research
Stroke
Twain, Mark (Samuel Langhorne Clemens) (1835-1910)
Europe
ISSN:1178-1653, 1178-1661, 1178-1661
Online Access:Get full text
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Summary:A quote attributed to Mark Twain states, “What gets us into trouble is not what we don’t know. It’s what we know for sure that just ain’t so.” The growing focus on patient centricity has revealed a misalignment between what patients report as important to them about their disease and/or treatment, and the data collected in research and care. Decisions across healthcare are made using an evidence base most stakeholders acknowledge is inadequate. Patients might report that what is important to them are everyday life impacts, concepts that can be very different from the more typical clinical outcomes we often track. In this paper, we encourage expanding current thinking to all “impacts,” not only health outcomes, but also the other equally (and sometimes more important) concerns patients report as important to them. We propose that a patient-centered core impact set be developed for each disease or condition of interest, and/or subpopulation of patients. A patient-centered core impact set begins with gathering from patients and caregivers an inventory of all impacts disease and treatments have on a patient’s (and carers’ and families’) life. Then, through a formal prioritization process, a core set of impacts is derived, inclusive of but extending beyond relevant health outcomes. We offer several recommendations on how to move the goal of a patient-centered core impact set forward through collaboration, leadership, and establishment of a patient-centered core impact set development blueprint with supporting tools.
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ISSN:1178-1653
1178-1661
1178-1661
DOI:10.1007/s40271-022-00583-x