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Tokenism in patient engagement.

David L Hahn1, Amanda E Hoffmann1, Maret Felzien2

  • 1Wisconsin Research and Education Network, Department of Family Medicine and Community Health, University of Wisconsin School of Medicine and Public Health, Madison, WI, USA.

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|September 24, 2016
PubMed
Summary

Genuine patient engagement in research requires authentic intent and relationship building, moving beyond superficial efforts. This approach ensures patient priorities are central, facilitating research translation into practice.

Keywords:
Culture and disease/cross-cultural issuesdoctor–patient relationshipfaculty developmenthealth literacyprimary care.

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Area of Science:

  • Patient and Community Engagement
  • Health Services Research
  • Research Methodology

Background:

  • Patient engagement in research aims to improve relevance and facilitate translation into practice.
  • Tokenism involves perfunctory or symbolic efforts to engage patients or communities.

Purpose of the Study:

  • To explore how tokenism impacts patient engagement in research.
  • To guide researchers toward more genuine patient engagement strategies.

Main Methods:

  • A workshop titled 'How Do We Move beyond Tokenism in Patient Engagement?' was held.
  • Patients, clinicians, and researchers shared examples of genuine and token engagement.
  • Data were collated and categorized into domains and items.

Main Results:

  • Genuine and token engagement were categorized into three domains: Methods/Structure, Intent, and Relationship building.
  • Longitudinal engagement was identified as crucial for translating research into practice.
  • Early engagement efforts may appear tokenistic as trust is built.

Conclusions:

  • Genuine intent and relationship building are key to combating tokenism in patient engagement.
  • Seeking and utilizing patient experiences throughout the research process is vital.
  • Developing methods to evaluate engagement on a 'genuine-token' continuum is important.