Clinical review

Consumer health informatics

Gunther Eysenbach, researcher. 

Unit for Cybermedicine, Department of Clinical Social Medicine, University of Heidelberg, 69115 Heidelberg, Germany

ey{at}yi.com

Medical informatics has expanded rapidly over the past couple of years. After decades of development of information systems designed primarily for physicians and other healthcare managers and professionals, there is an increasing interest in reaching consumers and patients directly through computers and telecommunications systems. Consumer health informatics is the branch of medical informatics that analyses consumers' needs for information; studies and implements methods of making information accessible to consumers; and models and integrates consumers' preferences into medical information systems. Consumer informatics stands at the crossroads of other disciplines, such as nursing informatics, public health, health promotion, health education, library science, and communication science, and is perhaps the most challenging and rapidly expanding field in medical informatics; it is paving the way for health care in the information age.

	Methods

Top Methods Health care in the... Bringing medical knowledge to... Electronic health records... Decision aids to support... Quality control of health... Conclusion References

This non-exhaustive review focuses on topics from the field of consumer health informatics because there has been a markedly increased interest in this field (additional information is available on the BMJ's website). Medline was searched using the terms "consumer" and "informatics." The proceedings of the American Medical Informatics Association's symposiums (1998 and 1999) and the proceedings of the ninth World Congress on Medical Informatics (Medinfo 1998) were hand searched. The AltaVista search engine was used to retrieve information from the internet, using the search string "+definition + consumer health informatics" to find unpublished reports.^1-3

	Health care in the information age

Top Methods Health care in the... Bringing medical knowledge to... Electronic health records... Decision aids to support... Quality control of health... Conclusion References

Medical informatics is "the field that concerns itself with the cognitive, information processing, and communication tasks of medical practice, education, and research."⁴ Until recently medical informatics focused on developing applications for health professionals: medical informaticians looked at medical practice mainly through the eyes of health professionals rather than through the eyes of patients. Ten years ago Greenes and Shortliffe wrote: "After many years of development of information systems to support the infrastructure of medicine, greater focus on the needs of physicians and other health care managers and professionals is occurringto support education, decision making, communication, and many other aspects of professional activity."⁴ This earlier orientation towards providers can also be found in classic medical informatics textbooks, which rarely contain chapters on the information needs of consumers. ^{5 6}

This focus is changing. Driving factors in this change are the emergence of evidence based medicine and the growing awareness of the need to equalise relationships between health professionals and lay people.⁷ These trends can be seen in all developed countries and are partly the result of an effort to cut healthcare costs by improving patients' abilities to help themselves and make informed choices. The increasing availability of interactive information that is accessible to consumers, most notably through the internet and related technologies such as digital television and web television, coincides with the desire of most consumers to assume more responsibility for their health and the pressures of costs on health systems, the emphasis on the health of populations and on prevention, and the growing desire of health professionals to realise the potential of patients and their families. ^{8 9} Information technology and consumerism are synergistic forces that promote an "information age healthcare system" in which consumers can, ideally, use information technology to gain access to information and control their own health care, thereby utilising healthcare resources more efficiently.¹⁰ Today's "cyberdocs" on the internet may tomorrow turn into more trustworthy "cyberlicensed" professionals (who are specially trained and whose practice is monitored for quality) counselling patients online; this development is under way in the United Kingdom with the introduction of services such as NHS Direct, which provides advice to patients both on the web and over the phone.^11-13 Additionally, intelligent informatics applications can channel the floods of health information reaching consumers, can help patients attain a healthy balance between self reliance and seeking professional help, and can also help balance responsiveness to consumers and the management of demand,¹⁴ and virtual and face to face interaction.¹⁵ Information technology and consumer health informatics are becoming an integral part of modern concepts of public health and national healthcare policies in many developed countries (figure).¹⁶

View larger version (24K): [in this window] [in a new window]   The focus of traditional medical informatics is shifting from health professionals to consumers

	Bringing medical knowledge to consumers

Top Methods Health care in the... Bringing medical knowledge to... Electronic health records... Decision aids to support... Quality control of health... Conclusion References

One challenge is to develop or adapt existing computer based decision support systems (expert systems) for use by consumers. Most of these systems were originally developed to provide advice to clinicians about diagnoses or disease management. A recent multisite, randomised controlled trial studied the effect of two decision support systemsIliad (Applied Medical Informatics, Salt Lake City, UT) and Quick Medical Reference (University of Pittsburgh and Camdat, San Bruno, CA)on the decision making process of medical students, medical residents, and faculty. The study showed that the magnitude of effects was related to clinical experience: inexperienced users (students) benefited more from the advice than users who had more medical experience.¹⁸ These results could be extrapolated to lay people (patients) by hypothesising that such systems would provide the greatest benefit to those with the least previous knowledge (provided that the system could be adapted to their specific needs). This is a strong argument for adapting these systems for consumers.

One decision support system that is being adapted and tested for consumers is HouseCall (Applied Medical Informatics), an informatics system derived from the existing physician knowledge base Iliad.¹⁹ HouseCall generates a diagnosis based on the user's symptoms and medical history, allows a personal medical history to be noted, and offers easy to read information on a variety of medical topics. Focus group evaluations of HouseCall have shown that the program is easy to use and that consumers like using technology at home to investigate health issues and like participating in solving their medical problems.

Obviously, such systems "do not and cannot replace visits with physicians; they can, however, make such encounters more productive, for both doctor and patient."³ They may also help to triage patients. For consumers, the aim of such support systems would not be to make definitive diagnoses or to propose treatment but to answer simple questions such as "do I need to see a doctor?" or to alert patients to potential drug interactions or other health risks.

The main challenge in developing comprehensive systems for consumers is that little is known about how patients interact with computer based informatics tools and how they digest and act on information.

	Electronic health records accessible to patients

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Consumer health informatics is designed to empower consumers by putting health information into their hands, including information on their own health, such as diagnoses, lab results, personal risk factors, and prescribed drugs. The European Union's data protection directive (in effect since October 1998) requires all member countries to enact legislation enabling patients to have access to their medical records.

Putting records into patients' hands is not a new idea.²⁰ Baldry et al conducted an early experiment in giving patients in the waiting room their medical records to read,²¹ and patient held records seem to have ethical and practical benefits.²²

One way of facilitating patients' access to their medical records may be through the internet or the adoption of smart cards, or both. The adoption of smart cards was recently announced by the European Union in an initiative which aims to ensure that "all European citizens should have the possibility to have a health smart card to enable secure and confidential access to networked patient information" by 2003.²³ Smart cards can be used as places to store health information directly, or the electronic medical record can be put onto the internet and smart cards can serve as keys by providing access. Just as consumers bank online today, they may in future be able to browse and annotate their health records online.

Tailoring health information to patients
Because an electronic record provides a natural base for individually tailored health messages, online records also open new avenues for health education. On the internet it is possible to link personal information to external resources such as glossaries, websites, and databases such as Medline. For example, if the doctor's list of diagnoses or suggested changes to the patient's lifestyle contains the word "smoking," links can automatically refer the patient to health promotion sites that advise people on how to quit. Future technological advances may bring this kind of information to mobile phones, hand held computers, personal digital assistants, and wearable computers.

	Decision aids to support consumers' choices

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Computer based applications are being developed to help clinicians integrate a patient's preferences (values) with scientific evidence, the patient's history, and local constraints. These systems also help patients make choices for treatment or screening on the basis of their preferences for different outcomes. Such decision aids, which can be used by patients with or without healthcare professionals, are especially desirable when the optimal management strategy depends on the strength of the patient's preferences for the different health outcomes that may result from the decision.²⁷ For example, a decision system for contraceptives choice would not only take into account personal risk factors (such as smoking) to determine the best choice but also determine the values the patient places on different outcomes, such as unwanted pregnancy or venous thrombosis.

Decision aids differ from information aids mainly in that they contain explicit components to help users clarify their values: the patient's personal values and the utility or importance of the risks and benefits of each alternative are elicited. Because of their interactive nature, computer based solutions have clear advantages over traditional media, and a number of applications already exist.¹ The medical informatics community is increasingly working towards integrating patients' preferences with electronic health records.²⁸

	Quality control of health information on the internet

Top Methods Health care in the... Bringing medical knowledge to... Electronic health records... Decision aids to support... Quality control of health... Conclusion References

The internet is a vast resource, but to realise its full potential it is necessary to direct consumers to high quality information and to teach them how to assess the quality of information.

The quality control of health information on the internet rests on four pillars: educating the consumer, encouraging the self regulation of providers of health information, having third parties evaluate the information, and enforcing sanctions in cases of dissemination of fraudulent or harmful information.

Considerable progress has been made in all four fields. An ongoing European Union project, the MedPICS Certification and Rating of Trustworthy Health Information on the Net (medCERTAIN; www.medpics.org/medcertain/), is based on the idea that the quality of health information and interactive applications on the internet should not be controlled by a central body or authority but instead must be evaluated and labelled (associated with meta-information) by medical societies, professionals, or consumer organisations.^29-32 The project is developing a technical infrastructure to allow individuals, organisations, associations, societies, and other entities to rate the published health information found online by using a standardised vocabulary. The medCERTAIN consortium will also create different levels of certification for those who publish health information on the internet; these will range from a simple rating of "good standing" to "gold seals" indicating that the site has been externally peer reviewed.

Several groups have developed interactive internet tools to educate consumers; these tools help users to manually filter information and to assess the quality themselves (www.quick.org.uk, www.discern.org.uk, http://hitiweb.mitretek.org/).³³ However, none of these tools has been validated. Discern, a tool for assessing the quality of written patient information, is being adapted for use on the internet.³⁴

A professional code of ethics for stakeholders who have an interest in providing health resources online (such as health portals, academics, and public health experts) has been drafted. In January 2000, about 50 experts in providing health information online attended the "e-health" summit on the ethics of providing information on the internet in Washington, DC; they drew up a code of ethics that addresses issues of quality; commercial behaviour; privacy, security, and confidentiality; and the use of the internet in practising health care.³⁵

	Conclusion

Top Methods Health care in the... Bringing medical knowledge to... Electronic health records... Decision aids to support... Quality control of health... Conclusion References

Although the information society offers tremendous potential for reducing the knowledge gap between professionals and patients, it also brings a risk of a widening of the gap between those who have access to new technology and those who have been excluded.³⁶ Bridging this digital divide and bringing consumer health informatics to groups that have the greatest need will be particularly challenging. In the industrial age, the inverse care law described the idea that the availability of good medical care tends to vary inversely with the need for medical care in the population served.³⁷ In the information age, we face an analogous "inverse information law"that is, access to appropriate information is particularly difficult for those who need it most. The vicious circle of low education and low health literacy and low income, poor health, and the inaccessibility of information technology, can only be broken if the field is not left to market forces alone but if public health policy actively brings information technology to those who are underserved.

In 1990, Shortliffe and Perrault wrote that for health professionals "it is increasingly difficult to practice modern medicine without information technologies"a statement that is more true than ever today.⁵ However, these days there is an additional trend: it is also increasingly unlikely that health professionals will encounter patients who have not used information technology to influence their health knowledge, health behaviour, perception of symptoms, and illness behaviour. Health professionals should, therefore, not only understand consumer health applications but also ensure that these applications are developed, applied, and evaluated properly.

The greatest contribution of consumer health informatics research to the healthcare sector may eventually be found in its attempts to systematise and codify consumers' needs, values, and preferences; in its research into how information is digested and is best presented to consumers; and in its research into how these variables influence outcome measures. Thus, current health informatics research may have greater implications for the practice of medicine than medical informatics ever did before.

	Acknowledgments

The author benefited from discussions about the definition of "consumer health informatics" with members of the American Medical Informatics Association Working Group on Consumer Health Informatics at the their autumn symposium, in 1999 in Washington, DC, most notably Alex Jadad and Betty L Chang.

	Footnotes

Competing interests: GE receives fees from consumer health websites for speaking and consultant work.

Additional information about the emergence of consumer informatics is available on the BMJ's website

	References

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1.	Hersey JC, Matheson J, Lohr KN. Consumer health informatics and patient decision-making. Rockville, MD: Agency for Health Care Policy and Research, 1997. (AHCPR research report No 98-N001.)
2.	Patrick K, Koss S. Consumer health information: white paper. http://nii.nist.gov/pubs/chi.html (accessed 12 June 2000). (Working draft 15 May 1995.)
3.	United States General Accounting Office. Consumer health informatics: emerging issues. Washington, DC: US Government Printing Office, 1996. (No T-AIMD-96-134.)
4.	Greenes RA, Shortliffe EH. Medical informatics. An emerging academic discipline and institutional priority. JAMA 1990; 263: 1114-1120[Abstract].
5.	Shortliffe EH, Perrault L. Medical informatics: computer applications in health care. Reading, MA: Addison-Wesley, 1990.
6.	Van Bemmel JH, Musen MA. Handbook of medical informatics. Heidelberg: Springer, 1997.
7.	Coulter A. Paternalism or partnership? Patients have grown upand there's no going back. BMJ 1999; 319: 719-720[Free Full Text].
8.	Eysenbach G, Sa ER, Diepgen TL. Shopping around the internet today and tomorrow: towards the millennium of cybermedicine. BMJ 1999;319 (13 Nov). Full version: www.bmj.com/cgi/content/full/319/7220/1294 (accessed 31 May 2000).
9.	Jadad AR. Promoting partnerships: challenges for the internet age. BMJ 1999; 319: 761-764[Free Full Text].
10.	Smith R. The future of healthcare systems. BMJ 1997; 314: 1495-1496[Free Full Text].
11.	Eysenbach G, Diepgen TL. Evaluation of cyberdocs. Lancet 1998; 352: 1526[CrossRef][Medline].
12.	Pies R. Cybermedicine [letter]. N Engl J Med 1998; 339: 638-639[Free Full Text].
13.	Pencheon D. NHS direct: evaluate, integrate, or bust. BMJ 1998; 317: 1026-1027[Free Full Text].
14.	Pencheon D. Matching demand and supply fairly and efficiently. BMJ 1998; 316: 1665-1667[Free Full Text].
15.	Jadad AR, Gagliardi A. Rating health information on the Internet: navigating to knowledge or to Babel? JAMA 1998; 279: 611-614[Abstract/Free Full Text].
16.	Wyatt J, Keen J. The NHS's new information strategy. BMJ 1998; 317: 900[Free Full Text].
17.	Ferguson T. Health online and the empowered medical consumer. Jt Comm J Qual Improv 1997; 23: 251-257[Medline].
18.	Friedman CP, Elstein AS, Wolf FM, Murphy GC, Franz TM, Heckerling PS, et al. Enhancement of clinicians' diagnostic reasoning by computer-based consultation: a multisite study of 2 systems. JAMA 1999; 282: 1851-1856[Abstract/Free Full Text].
19.	Bouhaddou O, Lambert JG, Miller S. Consumer health informatics: knowledge engineering and evaluation studies of medical HouseCall. Proc AMIA Symp 1998:612-6.
20.	Coleman V. Why patients should keep their own records. J Med Ethics 1984; 10: 27-28[Abstract].
21.	Baldry M, Cheal C, Fisher B, Gillett M, Huet V. Giving patients their own records in general practice: experience of patients and staff. BMJ 1986; 292: 596-598.
22.	Gilhooly ML, McGhee SM. Medical records: practicalities and principles of patient possession. J Med Ethics 1991; 17: 138-143[Abstract].
23.	eEurope: an information society for all. Communication on a commission initiative for the special European Council of Lisbon, 23 and 24 March 2000. http://europe.eu.int/comm/information_society/eeurope/pdf/com081299_en.pdf (accessed 30 March 2000).
24.	Jones R, Pearson J, McGregor S, Gilmour WH, Atkinson JM, Barrett A, et al. Randomised trial of personalised computer based information for cancer patients. BMJ 1999; 319: 1241-1247[Abstract/Free Full Text].
25.	Kreuter M, Farrell D, Olevitch L, Brennan L. Tailoring health messages. Customizing communication with computer technology. London: Lawrence Earlbaum Associates, 2000.
26.	Rind DM, Kim JH, Sturges EA. SeniorMed: connecting patients to their medication records. Proc AMIA Symp 1999:1147.
27.	Barry MJ. Involving patients in medical decisions: how can physicians do better? JAMA 1999; 282: 2356-2357[Free Full Text].
28.	Brennan PF, Strombom I. Improving health care by understanding patient preferences: the role of computer technology. J Am Med Inform Assoc 1998; 5: 257-262[Abstract/Free Full Text].
29.	Eysenbach G, Diepgen TL. Towards quality management of medical information on the internet: evaluation, labelling, and filtering of information. BMJ. 1998; 317: 1496-1500[Free Full Text].
30.	Patrick K, Robinson TN, Alemi F, Eng TR. Policy issues relevant to evaluation of interactive health communication applications. Am J Prev Med 1999; 16: 35-42[Medline]. (Science Panel on Interactive Communication and Health.)
31.	Gustafson DH, Robinson TN, Ansley D, Adler L, Brennan PF. Consumers and evaluation of interactive health communication applications. Am J Prev Med 1999; 16: 23-29[Medline]. (Science Panel on Interactive Communication and Health.)
32.	Eysenbach G, Diepgen TL. Labeling and filtering of medical information on the Internet. Methods Inf Med 1999; 38: 80-88[Medline].
33.	Shepperd S, Charnock D, Gann B. Helping patients access high quality health information. BMJ 1999; 319: 764-766[Free Full Text].
34.	Charnock D, Shepperd S, Needham G, Gann R. DISCERN: an instrument for judging the quality of written consumer health information on treatment choices. J Epidemiol Community Health 1999; 53: 105-111[Abstract].
35.	Rippen H, Risk A. e-Health ethics draft code. J Med Internet Res 2000;2:e2. www.symposion.com/jmir/2000/1/e2/ (accessed 2 Apr 2000).
36.	Irving L, Klegar-Levy K, Everette DW, Reynolds T, Lader W. Falling through the net: defining the digital divide. A report on the telecommunications and information technology gap in America. Washington, DC: National Telecommunications and Information Administration, US Dept of Commerce, 1999.
37.	Hart JT. The inverse care law. Lancet 1971; i: 405-412.