Health information appraised for quality.

Abstract

This article examines key issues around the quality and availability of health information, and introduces a range of initiatives in the UK which support the quality agenda. These initiatives share aims both to assure the quality of heath information and to make this information available to the public. A long-running and wide-ranging investigation into medical standards in the UK culminated in the publication of the Bristol Inquiry report.1 Close to 200 recommendations were made. Many of these relate to the means through which information is communicated, including the following recommendations. Information about treatment and care should be given in a variety of forms, be given in stages and be reinforce over time (recommendation 4). Information should be tailored to the needs, circumstances and wishes of the individual (recommendation 5). Information should be based on the current available evidence and include a summary of the evidence and data, in a form which is comprehensible to patients (recommendation 6). Various modes of conveying information, whether leaflets, tapes, videos or CDs, should be regularly updated, and developed and piloted with the help of patients (recommendation 7). The public should receive guidance on those sources of information about health and healthcare on the Internet which are reliable and of good quality: a kitemarking system should be developed (recommendation 9). Before the Bristol Inquiry was published, the UK's Centre for Health Information Quality (CHIQ)2, 3 was established in 1997 through funding from the Department of Health. The centre acts as a clearing house for the NHS and others,4 with a lead role in accrediting health information for the public.5 CHIQ considers three key elements to the quality of information, relating to relevance, accuracy and clarity. These quality criteria are directly concerned with the skills and make-up of those involved in the production of health information. They are: Where members of the target audience have been involved, the information is more likely to demonstrate relevance. Where experts in the topic area have been involved, the information is more likely to demonstrate accuracy. Where a skilled health communicator has been involved, the information is more likely to demonstrate clarity. Additional indicators of quality can be measured through appraisal, once a piece of information has been produced. A combined assessment of the above provides a comprehensive appraisal of the quality of any health information resource. CHIQ is currently exploring additional quality issues which should be considered to ensure that health information is developed to support consumer choices in healthcare, in terms of both choice of provider and choice of treatment. Increasingly, producers of health-related websites display an image such as the HON Code logo (see http://www.hon.ch) or the blue CHIQ TriangleMark logo. Such an image conveys the message that a quality assurance process has been adopted by the producer. The CHIQ TriangleMark, for example, indicates that information has been tested by a skilled appraiser in the manner described above, and that it meets minimum criteria for quality. Two major initiatives promoting quality assured resources are the CHIQ Partners scheme and the National Knowledge Service (NKS). A number of organizations work with CHIQ to ensure information produced is independently reviewed. Discovery Health was the first organization to be awarded the ‘partner’ status, in January 2002. In the process of becoming a partner, an expert appraiser makes an initial assessment of the producer's editorial processes. The next stop is a review the resource, from which the appraiser makes a report indicating which quality criteria are met, and which need further attention to meet minimum standards. The producer makes any alterations required and re-submits the resource. Producers of resources which meet the minimum requirements are immediately confirmed as CHIQ Partners. Some of the partners’ services are described below. Macmillan Cancer Relief, together with CHIQ have recently produced the 4th edition of a ‘Directory of Information Materials for People with Cancer’. All entries to the directory have been tested using an assortment of appraisal tools (see http://www.chiq.org/macmillan). Discovery Health provides a range of services, including games and features, news headlines, and a TV guide which complements an interactive TV service. There are different sections, including those for men's health, and women's health (see http://www.discoveryhealth.co.uk). StartHere is a system which provides a range of health and social care information. Of particular note is a user-friendly interface, where text on the screen is kept to a minimum, and navigation is assisted with large icons representing buttons (see http://www.starthere.co.uk). Patient.co.uk– this website has more than 500 leaflets available online, covering a range of health and disease topic areas. Most general practitioners in the UK have access to these same leaflets to print out for patients and carers (see http://www.patient.co.uk). Brain & Spine Foundation has published 27 booklets on a variety of neurological conditions and procedures. A related helpline service was launched in 1998 and has since responded to more than 18 000 calls, and a website receives more than 3000 users per month (see http://www.brainandspine.org.uk). Midirs (Midwives Information and Resource Service) series of leaflets ‘Informed Choice’ provide fully referenced content for consumers and health professionals on a range of health issues around pregnancy and birth (see http://www.midirs.org). EIDO Healthcare produce procedure-specific, medico-legal documents, to support the consent process. Recent research indicates that patients find these very easy to understand (see http://www.eidohealthcare.com). BUPA (British United Provident Association) produces a range of health information resources, including factsheets, healthy living articles and news items (see http://www.bupa.co.uk). With many databases supporting healthcare in the UK produced nationally, the Department of Health is developing the NKS to co-ordinate development and provide access to these through one website. The NKS is piloting quality assurance techniques broadly similar to the CHIQ Partners concept (see below). Probably the best known component of NKS is NHS Direct Online, which provides a range of online health services, including a health encyclopaedia. CHIQ has recently undertaken projects on behalf of NHS Direct Online, identifying those consumer health materials which are most widely used in the fields of cancer, and presently, children's and maternity healthcare. Once information has been appraised, it should be made available widely to the public. Identifying networks of communicators is the key to this. It is important to guide health professionals to high quality health information services. Details of the presence of quality assured resources are sent out to clinical networks, both hospital and community-based. In the UK, Patient Advice and Liaison Services (PALS) are key services where information is sought by the public. CHIQ provides centralized administrative support for these services, creating a direct link between producers and consumers of quality assured information. With the Internet available to an increasingly global audience, messages about the quality of resources not only need to be shared locally, but also nationally and internationally. The media is extremely influential in communicating health messages directly to the public. Working with journalists specializing in health, whether in TV, radio or print media, helps ensure the details of the quality assured resources reach the widest audience. In the UK, CHIQ's annual conference provides an opportunity for health service users, producers and providers of health information to meet to hear the latest developments in the field of consumer health information. The 2004 event takes place in London, 4–5 February. MedNet,6 the 8th World Congress on the Internet in Medicine took place in December 2003 in Geneva. At this and similar events, experts meet to share ideas around improving the quality of health information, including representatives from the World Health Organisation and the European Commission. Patient organizations and self-help groups have a rich history of providing combined information services for specific target audiences. For example, people with cancer can use specialist telephone advice services provided by CancerBACUP (http://www.cancerbacup.org.uk) or Macmillan Cancer Relief (http://www.macmillan.org.uk). Through such services, users can access further information in leaflet format, or through the Internet. While organizations mentioned here are recognized as leaders in their field, the quality of similar services can be variable. With the ever-increasing volume of health information available to the public, it is important that quality assurance processes develop, particularly to ensure relevance, accuracy and clarity of information are always maintained. Once quality is demonstrated, mechanisms need to be employed to ensure such information is widely available to the public. This can be achieved through linking directly to consumers through the media and professional networks. NB. The Centre for Health Information Quality is part of the Help for Health Trust, a registered charity.