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Related Experiment Video

Updated: Mar 9, 2026

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Other Ways of Knowing.

Negin Hajizadeh1, Melissa J Basile2, Andrzej Kozikowski1

  • 1Department of Medicine, Hofstra Northwell School of Medicine, Hofstra University, Hempstead, NY (NH, AK, TL, TM, MAD).

Medical Decision Making : an International Journal of the Society for Medical Decision Making
|January 7, 2017
PubMed
Summary

Patients with advanced chronic obstructive pulmonary disease (COPD) need to make difficult decisions about life-sustaining treatments. The InformedTogether decision aid showed that while most understood the general information, low literacy patients struggled with details and relied on lived experiences, highlighting the need for tailored communication.

Keywords:
decision aidseducationhealth service researchoutcomes researchqualitative methods

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Area of Science:

  • Medical Informatics
  • Patient Decision Aids
  • Health Literacy

Background:

  • Advanced chronic obstructive pulmonary disease (COPD) patients face critical decisions regarding life-sustaining treatments versus comfort care.
  • The InformedTogether decision aid was developed to support these complex choices.

Purpose of the Study:

  • To pilot test the InformedTogether decision aid for usability.
  • To assess participant trust, acceptability, and emotional responses to the decision aid.
  • To gather recommendations for improving the decision aid.

Main Methods:

  • A mixed-methods approach was used with 26 participants (clinicians, patients, surrogates).
  • Usability tasks, interviews, and focus groups evaluated comprehension, trust, bias perception, and acceptability.
  • Qualitative and quantitative data analysis informed the findings.

Main Results:

  • Most participants grasped the core message of the decision aid.
  • Lower literacy participants encountered difficulties with detailed comprehension, particularly icon arrays, and often lacked awareness of misunderstandings.
  • A spectrum of emotional reactions was observed, with some participants utilizing "alternative knowledge" derived from lived experiences.

Conclusions:

  • Lived experiences significantly influence how patients interpret biomedical information in decision aids.
  • Tailoring communication by acknowledging "alternative knowledge," especially for low literacy patients, can enhance prognostic information delivery.
  • Shared decision-making tools should incorporate methods to elicit and integrate patients' unique knowledge frameworks.