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J R Soc Med. 2002 February; 95(2): 64–67.
PMCID: PMC1279312

A guide to creating your own patient-oriented website

This paper is designed to help clinicians or allied health professionals to construct their own patient-oriented website. Our website for Glaswegian patients, on ear, nose and throat problems [www.glasgowent.com ], was awarded four stars for both content and construction by the Internet Magazine1.

FIRST STEP

We recommend that you begin by deciding the aims and framework of your website. A list of the objectives on one side of A4 paper is helpful. As the website develops you should review this original list. The initial objectives should take account of the following.

  • Standard of information—The information should be free, readable, relevant and reliable
  • Website access—The site should be easy to find and use
  • Style of the pages—The web page services can be either informative or diagnostic, the presentation style didactic or interactive. Remember that video and graphics, if incorporated as teaching aids, may take a long time to download from the Internet
  • E-mail access—Decide whether or not your service will offer e-mail access and how this particular service will work. Will you offer a diagnostic service?
  • Staff structure—Outline roles for individual staff involved in the project. A dedicated faculty member should be identified as project leader or editor. Information technology (IT) staff who take part should have a reasonable understanding of the clinical subject matter. There should be good and regular communications between staff. The medical staff involved should have defined roles and dedicated tasks relating to their specialist interests.

CREATING THE WEBSITE

Access to the World Wide Web is made possible through your web browser, Microsoft Internet Explorer and Netscape Navigator being the most popular. The browser reads a unique type of code called hypertext markup language (HTML) whereby web pages of text and images are viewable by anyone else on the web.

You do not need specialist software to design your web page. A simple text editor or word processor will suffice; but an easier and less time-consuming approach is to use one of the many web page authoring packages available.

Once you have created your pages you will need file transfer protocol (FTP) software to upload your pages. This software provides a link between the files on your own computer and your web space. It can be used both to load and to delete files from the web space.

Many of the Internet service providers now offer free web space to subscribers. Once a website is created and uploaded to web space, it is available permanently on the web to anyone with an Internet connection.

Search engines

A user of the World Wide Web would use a search engine or a directory website to track down information. A search engine utilizes indexing software to survey the web continuously for new or updated pages. For every website visited the indexing agent records the full text of every page. If you submit details of your website to a search engine, this indexing process will be faster. The search engine software will periodically visit each website to update its information.

Websites such as the Yahoo! Directory act as an online guide to the web. Directories create their listings from website descriptions submitted by users. A staff of editors then visit and evaluate these websites and organize them into subject-based categories and subcategories.

Below is some advice for getting your website listed in search engines:

  • When visiting a website, the search engine software will first look at the <TITLE> tag. Use keywords in the <TITLE> of your web page, making it as descriptive as possible
  • <META> tags allow you to provide greater detail about your web pages and therefore influence the way search engines index them. Information entered here controls what appears as the summary of your web page and should convey to the user exactly what to expect when linking to your site. Some search engines will assign greater relevance to information located at the top of a web page.

Information

You now need to decide what information to provide on your website. Box 1 is a list of topics that we considered when designing our site, though not all were included.

Links

Links with other websites are essential to allow patients to view similar information that may approach a problem from a different angle or in more detail and from a source that you would consider reliable. Links can be made to local general practice surgeries, Royal Colleges, associated services and specialties, specialist centres of excellence, evidence-based medicine databases (e.g. Cochrane Library) as well as general health sites. DIPEx2 is a library of patient experiences—interviews on videos or audiotapes and in written transcripts—that has recently gone online. At present this site deals with prostate cancer and hypertension; but coverage will expand to other areas.

Box 1 Types of information for a website

General information about your hospital and travel information

Ward and staff details (who does what)

Services, both general and subspecialized, available in your department

Routine patient information regarding conditions commonly and not commonly treated in your department. Most of this information should be available already in pamphlet form and can be easily posted onto your site

Waiting list times for procedures/operations

Waiting times for clinics

Current updates

Support groups and how to contact them

Patients' charter

Ward/departmental charter

A patients' experiences page

Health promotion page

Ongoing research in your department

Frequently asked questions

Readability

Nearly a quarter of the UK working population have a low level of literacy3. Reviewing Glaswegian otolaryngology outpatients Kubba4 found that 96% had a reading level of a seventh grade student or better (an 11-year-old). This is the reading age to aim for in most patient information. Techniques to assess readability include the Cloze and SMOG scoring techniques, as well as some computer based indices such as the Gunning Fogg index

Most National Health Service trusts now have quality assessment departments which can examine material before it is posted onto the website. Trial and error by patient review and audit will help improve the readability of your website. Remember to tailor your language and content to local factors.

Quality

Increasingly, patients obtain information from the Internet before the consultation and not all this material is of high quality5,6,7,8. In both primary and tertiary healthcare settings, concern has been expressed about the accuracy of such information and the way patients interpret it9,10. Several rating tools have been developed for evaluation of health-related websites11,12, and key criteria include quality, reliability, accuracy, scope and depth of content, design and aesthetics, currency of information, disclosure of authors, sponsors and developers, authority of source, ease of use, accessibility and availability, and attribution and documentation11.

For help in quality development we recommend the websites produced by DISCERN13 and the Health Information Technology Institute, Agency for Health Care Policy and Research14. In refining quality we have been much helped by departmental and interdepartmental peer review, and again patient review and audit is valuable.

Advertisement

Patients need to know about your website. We provide the website address to patients at clinics and there are posters in the waiting area. Posters have also been sent to all general practitioners in our catchment area for display in their surgeries. The website address is to be placed on departmental letterheads.

Audit

Audit is an essential element of the website, with a formal commitment to continual assessment of patients' needs, values and preferences. This can be done via patient or general practitioner surveys, healthcare staff initiatives and regular review of e-mail comments from website readers.

Funding

When setting up a website you need to calculate the staffing and funding requirements. What are the possible sources of funding? Pharmaceutical companies are often keen to participate not only because they can advertise but also because they like to be seen to be involved in patient education. Questions of ethics and conflict of interest can arise. Tench et al.15 note that over 50% of patient-oriented rheumatology websites contain advertising. Provided that conflicts of interest are clearly stated, then it is reasonable to use pharmaceutical funding. A possible alternative is funding from your local NHS trust or a government agency (local, regional, national or European). Lastly, funds might be available from non-profit organizations and patient support groups with special interest in the area of healthcare covered by your website.

E-mail

If you decide that your site should have an e-mail facility then a protocol is required to establish who will review e-mails and who will respond to them. Patients use e-mails to elicit diagnoses, confirm diagnoses, validate treatments, seek further information regarding conditions and seek alternative therapies16.

Initial screening of e-mails can be done by IT or clerical staff, but if so an identified member of the medical staff must be available to deal with queries. One solution to ‘cries for help’ is a standardized reply, and this is effective though impersonal17. The volume of correspondence by e-mail will often determine your departmental response. A statement regarding e-mails must be included in the site disclaimer (see next section). At present our website responds to e-mails individually. Although we did not incorporate a diagnostic service, we receive unsolicited diagnostic inquiries both from general practitioners and from patients. There are two reasons why we do not offer consultations. First, we do not think that this form of consultation adequately replaces a face-to-face encounter; and, secondly, patient confidentiality cannot be guaranteed over the Internet.

Disclaimers

Uploading information to the World Wide Web has legal implications in every country where the web page is available. The content provider should consider limiting these consequences by putting a disclaimer on the page. This disclaimer should describe the limitations, purpose and authority of the information and emphasize that the content is general health information rather than medical advice. The disclaimer should state that only a qualified health professional is able to advise on individual health problems, and this advice is based on personal history and other information revealed in the professional/patient relation-ship. It must also define any relationship and responsibility between the original website content and links to other sites.

CONCLUSION

Our own website was established to complement our continuing commitment to the clinical service. Such a service leads to extra demand and requires additional staffing and financial resources. What are the advantages for patients? They include the following: it acts as a search engine which provides access to information from reliable sources; it may increase patient empowerment and so improve health outcomes; it allows instant patient access to information regarding their condition at any time; it allows patients to play a more active part in their own healthcare; and it allows patients to access information at their own rate as well as to their own level of interest.

The advantages to clinicians of setting up their own website are that they can direct patients to reliable, up-to-date and readable sources of information and thereby decrease confusion and anxiety. Patients will become more knowledgeable.

Although a website should improve certain aspects of patient care there may be drawbacks. Increased information does not seem to reduce the number of consultations and may increase individual consultation times. A website has direct costs in set-up, maintenance and staff. Patient expectations may be raised to a level higher than the service can provide. There is still little known about both short-term and long-term effects of healthcare information on public health.

We believe that the healthcare professions must come to terms with the implications of this information technology for the doctor—patient relationship. For those who aim for clinical excellence, a website will be a help rather than a hindrance.

Notes

Note All three of the authors were involved in planning and setting up [www.glasgowent.com ], which was established with initial funding from Schering Plough.

References

1. Internet Magazine, May 2001, p. 80
2. http://www.dipex.org (accessed 16 October, 2001)
3. Carey S, Low S, Hansbro J. Adult Literacy in Britain. London: Office for National Statistics, 1997
4. Kubba H. The reading skills of otolaryngology outpatients: implications for information provision. J Laryngol Otol 2000;114: 694-6 [PubMed]
5. Impicciatore P, Pandolfini C, Casella N, Bonati M. Reliability of health information for the public on the World Wide Web: a systematic survey of advice on managing fever in children at home. BMJ 1997;314: 1875-8 [PMC free article] [PubMed]
6. Groot D, Riet G, Khan KS, Misso K. Comparison of search strategies and quality of medical information on the internet: a study relating to ankle sprain. Injury 2001;32: 473-6 [PubMed]
7. Latthe PM, Latthe M. Khan KS. Quality of medical information about menorrhagia on the worldwide web. Br J Obstet Gynaecol 2000;107: 39-43 [PubMed]
8. Jones R. Developments in consumer health informatives in the next decade. Health Libraries Rev 2000;17: 26-31
9. Wilson SM. Impact of the internet on primary care staff in Glasgow. J Med Internet Res 1999;1:e7 [htttp://www.jmir.org/1999/2/e7/index.htm ] (accessed 14 November 2001) [PMC free article] [PubMed]
10. Bingham BJ, Wilson SM. Results of survey of Scottish otolaryngologists. ENT News (in press)
11. Kim P, Eng TR, Deering MJ, Maxfield A. Published criteria for evaluating health related web sites: review. BMJ 1999;318: 647-9 [PMC free article] [PubMed]
12. Jadad AR, Gagliardi A. Rating health information on the internet. Navigating to knowledge or to Babel? JAMA 1998;279: 611-14 [PubMed]
13. [http://www.discern.org.uk/discern_instrument.htm ] (accessed 14 October 2001)
14. Ambre J, Guard R, Perveiler FM, Renner J, Rippen H. Criteria for assessing the quality of health information on the internet. Health Information Technology Institute, Agency for Health Care Policy and Research [http://www.hitiweb.mitretek.org/iq/onlycriteria.htm ] (accessed 14 October 2001)
15. Tench CM, Clunie GP, Dacre J, Peacock A. An insight into rheumatology resources available on the World Wide Web. Br J Rheumatol 1998;37: 1233-5 [PubMed]
16. Bader SA, Braude RM. Patient informatics: creating new partnerships in medical decision making. Acad Med 1998;73: 408-11 [PubMed]
17. D'Allesandro DM, D'Allesandro MP, Colbert SI. A proposed solution for addressing the challenge of patient cries for help through analysis of unsolicited electronic mail. Pediatrics 2000;105:1324 [http://www.pediatrics.org/cgi/content/full/105/6/e74 ] (accessed 14 November 2001) [PubMed]

Articles from Journal of the Royal Society of Medicine are provided here courtesy of Royal Society of Medicine Press