Perspectives on illness-related stigma and electronically sharing psychiatric health information by people with multiple sclerosis

Eileen Yu, Alexis Adams-Clark, Alison Riehm, Caroline Franke, Ryoko Susukida, Melissa Pinto, Steven Arenberg, Dominique Tosi, Abbey Hughes, Amanda Montague, Anu Kumar, Kay Jamison, Adam Kaplin

Research output: Contribution to journalArticlepeer-review


Background: Electronic medical records (EMRs) facilitate more integrated and comprehensive care. Despite this, EMRs are used less frequently in psychiatry compared to other medical disciplines, in part due to concerns regarding stigma surrounding mental health. This paper explores the willingness to share medical information among patients with multiple sclerosis (MS), who experience higher rates of psychiatric comorbidities compared to the general population, and the role that stigma plays in patient preferences. Methods: MS patients were surveyed about their co-occurring psychiatric and non-psychiatric diagnoses, willingness to share their health information electronically among their treating doctors, and levels of self and societal stigma associated with their diagnoses. Results: Participants were slightly more willing to share their non-psychiatric medical information vs. psychiatric information. Despite the presence of stigma decreasing patient willingness to share medical records, those with psychiatric co-occurring disorders, compared to those without, endorsed significantly greater willingness to electronically share their health records. The majority of diagnoses for which participants experienced the greatest difference in self vs. societal stigmas were psychiatric ones, including substance use, eating and mood disorders. Societal stigma strongly correlated with decreased non-psychiatric medication sharing, while self stigma was strongly correlated with decreased psychiatric medications sharing. Limitations: Standardized scales were not used to assess patient stigma and there is a potential lack of generalizability of results beyond patients with MS. Conclusions: These insights into patient preferences toward sharing their medical information should inform decisions to implement EMRs, particularly for patient populations experiencing higher than average levels of psychiatric comorbidities.

Original languageEnglish (US)
Pages (from-to)840-845
Number of pages6
JournalJournal of Affective Disorders
StatePublished - Mar 1 2021


  • Electronic medical records
  • Multiple sclerosis
  • Stigma

ASJC Scopus subject areas

  • Psychiatry and Mental health
  • Clinical Psychology


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