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Patients as Part of the Diagnostic Team

Posted by on January 25th, 2018 Posted in: Patient Engagement
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This is the second in series of posts on patients, families and librarians in the diagnostic process.

In October 2017, I attended the Patients as Partners in the Diagnostic Process preconference for the Diagnostic Error in Medicine 10th International Conference in Newton, MA. To open the discussion, we watched this video from MedStar Health:

Larry Pennings, Associate Director of the Jefferson Center, facilitated the subsequent discussion about involving patients in the diagnostic process. Pennings stated that this “comes down to relationships.”

From 2014-2017, the Society to Improve Diagnosis in Medicine teamed up with the Jefferson Center and the Maxwell School of Citizenship and Public Affairs in a research project funded by the Agency for Healthcare Research and Quality (AHRQ). This project sought to determine how patient input could reduce diagnostic error.

Through a series of focus groups, these patient recommendations were identified:

  • Present symptoms clearly and completely. Be truthful and be prepared to discuss symptoms.
  • Assert yourself in the relationship. Notify provider if condition doesn’t improve. Seek a second opinion.
  • Coordinate your care. Enlist a patient advocate, if needed. Seek out responsive healthcare.
  • Ensure accurate records and tests. Maintain and update records. Correct errors.
  • Manage your care. Follow through and follow up on treatments, testing and additional appointments.

Healthcare providers were asked to respond, reflecting on patients’ ability and willingness to adhere to these recommendations. They identified many challenges, including lack of trust, mental health issues, inaccurate medical histories, and difficulties with communication.

Participants in a Consumer Feedback group responded that patients have limited choices due to insurance and ability to pay for care. A fragmented system inhibits communication and the complexity of the healthcare system makes it difficult for patients to manage their own care. Healthcare culture focuses on efficiency, so that patients have limited time to interact with doctors.


Supporting Patient and Family Engagement

A librarian’s role in supporting patient and family engagement is manifold. Librarians manage information resources and provide instruction in the use of those resources. Librarians build relationships with and between stakeholders in reducing diagnostic error. Librarians who work with patients and families will witness the struggles of those who lack medical information, or who misunderstand information given to them. Librarians who work in health sciences will understand the need for health literacy resources for clinicians, researchers and students.

AHRQ offers an excellent page of resources on Patient and Family Engagement. The resources are segmented by user population: Hospital Staff, Patients and Families, Medical Office Staff, Long-Term Care Facility Staff, and Ambulatory Surgery Center Staff.

MedlinePlus provides Health Topics pages on Health Literacy and Patient Safety. These MedlinePlus pages are geared toward the consumer, and offer a great opportunity to view a variety of online tools from AHRQ, Joint Commission, FDA, CDC and NIH.


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NNLM New England Region
University of Massachusetts Medical School
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Worcester, MA 01655
(508) 856-5985

This has been funded in whole or in part with Federal funds from the Department of Health and Human Services, National Institutes of Health, National Library of Medicine, under cooperative agreement number UG4LM012347 with the University of Massachusetts Medical School.

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