ArticleThe patient2022
Patient-Centered Core Impact Sets: What They are and Why We Need Them.
Article in The patient, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 12 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
12 citing papers in PubMed, 32 citations in OpenAlex.
- Characterizing and quantifying disease impacts of generalized myasthenia gravis (gMG) in the United States: insights from patient and caregiver interviews and surveys.Journal of patient-reported outcomes · 2026Article
- Identification of Core Outcome Domains and Design of a Survey Questionnaire to Evaluate Impacts of Digital Health Solutions That Matter to People With Diabetes.Journal of diabetes science and technology · 2025Article
- Using a Patient-Centered Multicriteria Decision Analysis to Assess the Value of Multiple Sclerosis Treatments in the US: A Study Protocol.PharmacoEconomics - open · 2024Article
- Patient-driven research priorities for patient-centered measurement.BMC health services research · 2024Article
- Revisiting the hospital-issued gown in hospitalizations from a locus of control and patient-centered care perspectives: a call for design thinking.Frontiers in public health · 2024Article
- Healthcare Stakeholder Perspectives on a Value Assessment Approach for Duchenne Muscular Dystrophy Therapies.Journal of multidisciplinary healthcare · 2024Article
- Operationalizing the Chronic Care Model with Goal-Oriented Care.The patient · 2023Article
- Co-creation of the Global Patient Experience Data Navigator: a multi-stakeholder initiative to ensure the patient voice is represented in health decision-making.Research involvement and engagement · 2023Article
- Patient-Centered Core Impacts Sets (PC-CIS): What They Are and What They Are Not.Innovations in pharmacy · 2023Article
- QALYs: The Math Doesn't Work.Journal of health economics and outcomes research · 2023Article
- Social Prescribing Outcomes for Trials (SPOT): Protocol for a modified Delphi study on core outcomes.PloS one · 2023Article
- Evidentiary Standards for Patient-Centered Core Impact (PC-CIS) Value Claims.Innovations in pharmacy · 2022Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
6 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
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.
Indexed as
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.