Consumer informatics supporting patients as co-producers of quality

Learning points from paper

A three-way partnership is developing between patients, providers, and information systems, with synergistic interrelationships among the three.

Several key themes:

• Changes in roles of consumers and providers
• Support for a patient–provider–information technology partnership
• Virtual, not physical, structure for health care and health care information delivery
• Health care as an integrated part of each person's life

Patients must take control of their health (See: Greenfield S, Kaplan SH, Ware JE. Expanding patient involvement in care: effects on patient outcomes. Ann Intern Med. 1985;102:520–8; Greenfield S, Kaplan SH, Ware JE, Yano EM, Frank HJL. Patients' participation in medical care: effects on blood sugar control and quality of life in diabetes. J Gen Intern Med. 1988;3:448–57.)

Major trends what consumers want and how it is being provided:

• Consumers want personalized relationships with their clinicians, more than with a hospital, so that they get information that addresses their individual concerns and conditions.
• Consumers also interactive tools to manage their health and diseases, e.g., in the CHESS project, patients can use a decision aide to determine the treatment choice most consistent with their personal values. (See: Gustafson DH, Robinson TN, Ansley D, Adler L, Brennan PF. Consumers and evaluation of interactive health communication applications. The Science Panel on Interactive Communication and Health. Am J Prev Med. 1999;16:(1):23–9.)
• Growth of wireless technology, making it possible for people to monitor their diseases in much the same way that physicians do. The Telephone-Linked Care system, which has been used in this way to monitor patients with chronic diseases like hypertension, is one example. (See: Friedman RH, Kazis LE, Jette A, et al. A telecommunications system for monitoring and counseling patients with hypertension: impact on medication adherence and blood pressure control. Am J Hypertens. 1996;9:285–92.)
• Decline of megaportals that provide information on a wide range of topics, from health to entertainment, and the rise of vertical portals that integrate information around a single theme, such as the prevention and treatment of cancer. People want, and benefit from, highly personalized, customized, targeted, tailored information and, ultimately, care delivery and case management. (See: Kreuter MW, Strecher VJ, Glassman B. One size does not fit all: the case for tailoring print materials. Ann Behav Med. 1999;1:(4):276–83.)

Critique of paper

Other comments

Citation and Abstract

J Am Med Inform Assoc. 2001 Jul-Aug;8(4):309-16. Consumer informatics supporting patients as co-producers of quality. Kaplan B, Brennan PF.

Yale University, New Haven, Connecticut, USA. bonnie.kaplan@yale.edu

The track entitled "Consumer Informatics Supporting Patients as Co-Producers of Quality" at the AMIA Spring 2000 Congress was devoted to examining the new field of consumer health informatics. This area is developing rapidly, as worldwide changes are occurring in the organization and delivery of health care and in the traditional roles of patient and provider. This paper describes the key themes of the track; implications of the growing area of consumer health informatics; and recommendations for informatics research, design, and policy. Key themes that emerged from the panels and discussions involved changes in roles of consumers and providers; supporting a patient-provider-information technology partnership; virtual, not physical, structure for health care and health care information delivery; and health care as an integrated part of one's life. Panelists and participants at the Congress developed recommendations for informatics research, design, and policy, with an overarching focus on how to support the patient-provider-information technology partnership to provide more patient-centered health care. They recommended that AMIA take an active leadership role in consumer health informatics. Specific recommendations were made concerning research, new patient record systems, provider support, information access and evaluation, and policy and regulation.

PMID: 11418537 [PubMed - indexed for MEDLINE]

PMCID: PMC130075

Related Links

• Developing health website quality assessment guidelines for the voluntary sector: outcomes from the Judge Project. [Health Info Libr J. 2004]
• ReviewThe potential of consumer health informatics. [Semin Oncol Nurs. 2001]
• Bridging the digital divide: reaching vulnerable populations. [J Am Med Inform Assoc. 2004]
• Consumer health informatics: a consensus description and commentary from American Medical Informatics Association members. [Proc AMIA Symp. 2001]
• ReviewConsumer health information seeking on the Internet: the state of the art. [Health Educ Res. 2001]