CONSUMER HEALTH INFORMATICS

Consumer health informatics is a relatively new discipline and has been defined by Eyesnbach as:

“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.” ¹

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Consumer health informatics thus provides patients in their role as consumer of healthy information with the tools, skills and support they need to better manage their health decisions.² There are a variety of sources for health information with the patients being the biggest resource. ³ The explanations of their problems, along with tests and procedures that are carried out, represent the greatest portion of information processed in healthcare.

Healthcare providers with this wealth of information are turning to consumer health informatics to provide patients with not only health advice brought about by the analysis of the information but with an opportunity to manage certain aspects of the being the source of information by building their own patient records.

This can be done using methods ranging from using pen and paper through using the telephone to acquire information to the using of software on a patient’s personal computer that allows them to manage their records and observations through a private website.

In the United Kingdom, one of the goals of the National Health Service (NHS) is to provide patients with access to their records by the year 2004 and pilot studies (as part of the NHS Information Authority ERDIP) already carried out have shown that this has improved the quality of information found in the records. ⁴

Consumer health informatics provides three models, which can be used to distribute health information:

Consumer Health Informatics at the individual level

In this model, health information can be passed on to the patient during consultations with their physicians. The physician can educate the patient about their conditions and the various options open to them, and also give explanations on the decisions taken to manage their condition. This is especially useful with patients with long-term conditions such as diabetes and hypertension.

Leaflets are another good source of information, and they can contain facts about common ailments and clinical scenarios. The leaflets can also contain information about support groups and self help materials. These leaflet are usually handed out during consultations.

Computer Aided Learning (CAL) tools are beginning to play an increasing role in consumer health informatics, as organisations are now producing software programs packaged in compact discs (CDs) as a tool for educating the more sophisticated patients who need to learn more about their condition and how to best manage it.

Consumer Health Informatics at the organisational level

Healthcare organisations have begun to see an increase in the number of health-conscious patient, and this has led to an increase in the demand for health information. While these patients can find health information outside of the traditional healthcare make-up, many still look to their healthcare providers a trustworthy source of information.

Healthcare providers can tailor information for their patients for a number of issues ranging from lifestyle and diet advice to providing information about repeat prescriptions for patient in long term care. Practices can take advantage of the Internet by providing websites where all these information is freely available, or use news groups or email distribution lists to regularly provide their patient with health information.

Consumer Health Informatics at the societal level

This form of consumer health informatics is commonly associated with e-Health and focuses on the communication to the patients as well as the general public. The Internet facilities consumer-to-consumer applications, which are empowering patients in ways previously not seen. In recent years there has been an explosion of health information available on the Internet, through consumer health websites and are some of them being the most visited sites on the Internet. ⁵

The quality of information varies and stemming from this it would be useful to provide a quality-controlled source of healthcare information to the consumer. ⁶

Organisations like Health On The Net Foundation with its HON code and Discern seek to provide a code of conduct that websites aim to adhere to: criteria include ⁷

• Authority
• Complementarity
• Confidentiality
• Attribution
• Justifiability
• Honesty in advertising and editorial policy
• Transparency of authorship
• Transparency of sponsorship

As Consumer Health Informatics becomes more pervasive many returns will be seen notably:

• Large Increase in computer and internet-based electronic communication
  
• Health consumers who are progressively more secure with the electronic transfer of information between them and healthcare professional and organisations.
  
• Patients who are increasingly responsible for their health care decision-making.
  
• The quality of care deliverables will increase; length of admissions as well as their number and frequency will reduce
  
• There will be an improvement in the continuity of care
  
• Guaranteed validity and consistency of the available information
  
• Effective privacy and data protection
  
• A strengthening of the physician-patient relationship in which information flows in both directions.

References

1. Eysenbach G. Recent Advances: Consumer Health Informatics. BMJ 2000; 320: 1713–16
2. National Library of Medicine.; National Institutes of Health. [WWW] 3^RD July 2003. Consumer Health Informatics Research. http://lhncbc.nlm.nih.gov/cgsb/research/chr/ (30^TH July 2003).
3. Simpson, Louise.; Robinson, Paul.; e-Clinical Governance. Radcliffe Medical Press (Oxford). 2002.
4. IT Perspective Ltd. [WWW] 27^TH January 2003. ERDIP Local Evaluation Support: Final Report. http://www.nhsia.nhs.uk/erdip/pages/evaluation
   /docs/localeval/L1finalReportjan03.pdf 30^TH July 2003.
5. BBC News. [WWW] 14^TH September 2003. Health websites gaining popularity. http://news.bbc.co.uk/1/hi/health/2249606.stm (25^TH July 2003).
6. Eysenbach G.; Jadad AR. Evidence-based Patient Choice and Consumer Health Informatics in the Internet Age. Journal of Medical Internet Research 2001;3(2):e19 (URL: http://www.jmir.org/2001/2/e19/)
7. Health On the Net Foundation. [WWW] 23^TH April 2003. HON Code of Conduct (HONcode) for medical and health Web sites : Principles. http://www.hon.ch/HONcode/Conduct.html. (08^TH September 2003).

• NHSDirect Online
  Consumer Health website run by the National Health Service (NHS) in the UK.
  http://www.nhsdirect.nhs.uk/

• WebMD
  Hugely popular consumer health site.
  http://my.webmd.com/webmd_today/home/default

• Health on the Net Foundation
  Non-profit organisation that provides guidance for health information on the Internet.
  http://www.hon.ch/

QUICK LINKS

International Medical Informatics Association

American Medical Informatics Association

UK Health Informatics Society

British Computer Society Health Informatics Committee

European Federation for Medical Informatics

American Nursing Informatics Association

American Telemedicine Association

Last Updated: 10 August 2006.