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Eliciting stakeholder preferences for patient-centered research.

Elizabeth Mostofsky1,2,3, Jillian A Dunn3, Sonia Hernández-Díaz3

  • 1Cardiovascular Epidemiology Research Unit, Beth Israel Deaconess Medical Center, Boston, MA, USA, elm225@mail.harvard.edu.

Patient Preference and Adherence
|March 14, 2019
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Summary

Patients and physicians identified key health outcomes, such as medication side effects and hospital-acquired infections, for electronic health record research. This patient-centered approach ensures research aligns with individual preferences and treatment decisions.

Keywords:
clinicalhealth communicationpatient-oriented methods

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Area of Science:

  • Health Services Research
  • Patient-Centered Outcomes Research
  • Health Informatics

Background:

  • There is a growing need to prioritize patient-centered research questions over those solely driven by medical professional interests.
  • Evidence reflecting individual patient preferences is crucial for informed treatment decisions.

Purpose of the Study:

  • To identify patient and physician-important exposures and outcomes relevant for study using electronic health record (EHR) data from inpatient care.
  • To align research priorities with the needs and concerns of those receiving and providing healthcare.

Main Methods:

  • A mixed-methods analysis was conducted using semi-structured interviews with 76 patients and 26 physicians at Beth Israel Deaconess Medical Center.
  • An inductive approach was employed to identify key themes related to the healthcare experience from interview data.
  • Focus was placed on topics amenable to study using electronic health record data from inpatient settings.

Main Results:

  • Patients expressed significant concerns regarding adverse medication effects, drug interactions, and invasive procedures like surgery.
  • Key outcomes of concern included in-hospital mortality and hospital-acquired infections.
  • Participants emphasized the importance of clear communication, information transfer, hospital environment, clinical competence, and patient dignity.

Conclusions:

  • Collaborative research development involving patients and physicians yields crucial insights into significant exposures and outcomes.
  • While this study focused on EHR-data-amenable topics in inpatient care, the methodology can inform research in other healthcare areas.
  • This patient-engaged approach enhances the relevance and applicability of health research.