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J Am Med Inform Assoc 1998;5:563-570 doi:10.1136/jamia.1998.0050563
  • Original Investigation
  • Research Paper

Informing Patients

A Guide for Providing Patient Health Information

  1. Paul C Tang,
  2. Carol Newcomb
  1. Affiliation of the authors: Northwestern Memorial Hospital (PCT, CN) and Northwestern University Medical School (PCT), Chicago, Illinois. The research was conducted and the paper written when Dr. Tang was a full-time employee of North-western Memorial Hospital. He is currently Medical Director of Clinical Informatics at the Palo Alto Medical Foundation and is a part-time employee of Epic Systems, the vendor of EpicCare software, in Madison, Wisconsin
  1. Correspondence and reprints: Paul C. Tang, MD, Palo Alto Medical Foundation, 300 Homer Avenue, Palo Alto, CA 94301. e-mail: 〈tang{at}smi.stanford.edu
  • Received 8 April 1998
  • Accepted 8 July 1998

Abstract

Objective To understand and address patients' need for information surrounding ambulatory-care visits.

Design The authors conducted two patient focus groups regarding patient education. The first covered general information needs of patients and the second explored their reactions to a computer-generated patient handout that was developed in response to the results of the first focus group and implemented in a clinic.

Results Participants sought information about their health—generally after the encounter with their caregiver. They wanted a permanent record of personal health data and relevant educational information. Participants recommended that the information be concise, clear, and illustrated with graphics if appropriate. Receiving health-related information from their providers favorably affected the participants' trust in, relationship with, and confidence in their physicians. When given printouts with graphic trends depicting their responses to therapy, participants reported that they were more motivated to adhere to a treatment plan and were more satisfied with their care. Based on the results of the focus groups, we developed a set of attributes (P.A.T.I.E.N.T.) to guide the development of patient and consumer health information.

Conclusions Patients participating in our focus groups felt that providing printed summary information to patients at the end of a clinic visit improves their understanding of their care, enhances their relationships with providers, improves their satisfaction with care, and motivates them to adhere to treatment plans. Further empirical studies are necessary to test their perceptions.

Footnotes

  • This work was supported in part by High Performance Computing and Communications contract N01-LM-43509 from the National Library of Medicine and by Micromedix Corporation.

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