Creating a successful patient site

Websites can be an important resource for providing patients with information about their disease, whether they are newly diagnosed, or have been living with the condition for some time. You will also be providing support to carers, who often feel that they cannot ask their loved ones the questions about the disease. The information may also be useful for doctors, who can refer patients to it for more information.

Patient associations are encouraged to use these pages as a model for their own site.

This document is designed to give you advice on developing your own patient website. It covers:

• Developing content (including tips on using content from outside sources and creating accessible content)
• Site maintenance
• Designing an accessible site (tips on design and functionality)
• Increasing site visitors (how to get people to visit your site – including tips on submission to search engines, generating links and getting your site known)
• Cost considerations (initial and ongoing)
• Obtaining resources (funding and expertise)

Developing content for a website

Making a website relevant and useful is probably the biggest challenge in developing content. Websites need to be inviting, and present the right level of information for the audience. It is important to decide which information needs to be presented on the screen, and which can be downloaded and read later.

• Making your site relevant
  If you are creating a website for your national organisation, the content should reflect local practices, customs and guidelines. There are several ways you can ensure this:
  
  Translate into your local language
  The content on these pages is appropriate for an English speaking audience. There is some specialised language on these pages. For example, some medical terms are known by many different names throughout Europe and the rest of the world. If you are translating the content, it is important that the most recognisable name for the disease or condition is used in your site. It is also important that the tests used by doctors and the names of the medical devices reflect the words used in your country.
  
  Use local case studies
  Case studies of people with the disease make an immediate impact. If you use locally developed case studies, visitors to your site are more likely to identify with the circumstances and experiences described
  
  Include national statistics where possible
  Statistics on how common the disease is are usually found in national government websites
  
  Provide information on health services in your own country
  Health services vary considerably from country to country. Try to be as specific as possible when writing about potential benefits available to patients
  
  Provide links to local and national sites
  National charities dealing with the disease and other related conditions will be of interest to people visiting your site. If you provide a link to their sites, these charities are likely to provide a reciprocal link back to yours
  
  Consider providing national and local events listings
  
• Finding content for a website
  If you are writing content for a website you are likely to go to several different sources to find information. Useful sources of information include:
  
  Health service providers or government bodies may have information you can use or adapt
  
  Scientific societies can provide information on diseases and treatments
  
  However, if you want to use material from other sources (books, magazines, websites), you may need to obtain permission. It is usual to ask for permission in writing from the publisher or the author. One way of simplifying the process is to link your website to other websites that have useful content. It is ideal for these links to appear in new windows, so people don’t lose the connection to your site. Ask your website administrator for more information on how to do this.
  
  If you are working with a commercial partner, you will need to ensure that the sponsorship follows the regulations in your own country.
  
• On this website, you will find some copyright free sections that may be of interest and which you are welcome to disseminate.
  

• Tests your doctor may perform
• Things to do to avoid exacerbations
• Glossary
• Advice on staying active
• Coping with everyday chores
• Reducing indoor pollution
• Treatments
• Frequently asked questions
  
• Writing your own content
  
  Use clear language and short sentences. Keep the main text simple and provide more detail in pop-up boxes or links. Use subheadings to break up text. Ensure that the subheading summarises the content of the following text. If you have a list, arrange it vertically rather than horizontally.
  
  Also, provide a glossary of medical terms. This can be linked to the main text for easy reference.
  
  Lastly, ask a patient with the condition to look at the content. Make sure they understand everything on the site.
  
• Essential checks for content
  
  Get a general practice doctor and a respiratory physician to check the content for accuracy. They will also be able to check that the content reflects national guidelines and practice.
  
  If you are working with a commercial partner, you will need to ensure that the sponsorship follows the regulations in your own country.
  
  If you are referring to treatments on this website, you may want to check the precise wording of the licence within your own country.

Creating useful listings

Search engines such as Google, AltaVista and Looksmart are helpful to identify useful websites to list as links on your site. The types of links to list include:

• Other patient sites in your country
• National health ministry/department of health patient websites
• Government-sponsored public health sites (such as NHSDirect in the UK)
• Non-governmental organisations (such as the National Institute for Clinical Excellence in the UK and the Food and Drug Administration in the USA)
• General patient information sites (e.g. Netdoctor – various country-specific versions are available, including UK, Germany, Austria, Sweden)
• Related patient information sites (e.g. asthma societies)
• Hospices
  

Don’t forget to include a link to www.efanet.org

Site maintenance

All websites need regular maintenance in order to stay up to date and relevant. Regular updates also:

• Help keep your website prominently ranked in searches (sites that are not updated are deleted from search engine registers altogether).
• Encourage repeat visitors and recommendations.

Timing of updates

It is recommended that the whole site be reviewed every six months or less to ensure the information is updated and accurate. Certain types of content will need more attention. For example, the following types of content may need more frequent checks and updates, perhaps weekly, monthly or quarterly:

• Event listings
• Information on clinical trials
• News pages
• Links
• Contact information for your patient organisation
  

The amount of time that will be needed for maintenance should be considered at the planning stage of a site. It is generally better to have a small amount of clear, accessible information that you are easily able to keep up to date.

Designing an accessible site

Be aware of the age group who will be visiting your website. Older people will not have a high level of technological literacy, which should be considered in the design and functionality of your site. The site should be easy to understand and use, so that it is accessible to as many people as possible.

Design and functionality tips

Website design is most effective when it is simple and easy to read.

Fonts

• Readers generally prefer large, clear, simple fonts (lettering). Verdana, which is the font that this document is written in, can be easier to read rather than a fancy font that is difficult to read
• It is far easier to read text in a dark colour (black, dark blue) on a light background (white, pale yellow, pale blue) – avoid light text on a dark background
• Text in very bright colours is difficult to read and can cause eye-strain
  

Headings

• Headings that are written in all capital letters are difficult to read. Ideally, use capitals only for the first letter of a heading.

Highlighting key issues

• It is often useful to make links obvious to help people navigate your site. Rather than simply having links underlined, include an instruction such as “click here for more information”.

Graphics and animation

• Graphics and animations make your site more visually appealing and help explain concepts, however, they should be used in moderation because they do have some unintended consequences:
  
  They can make the page busy and less simple to read
  
  They make the site slower to upload and navigate
  
  They may make your site unreadable for people with older computers/software
  
  They increase your development costs/resources needed
  
  They increase your maintenance costs – monthly ‘hosting’ costs are based on how much space (memory) your site takes up

Downloads

• Include downloadable files in Word™ as well as PDF versions, so that people can access them even if they don’t have Adobe Reader® or Acrobat™
• Provide a link so that people can download Adobe Reader® for free if they want to (register your details at http://www.adobe.com/products/acrobat/distribute.html).

Increasing site visitors

There are a number of ways to increase awareness of your website and encourage people to visit it. There are three main ways that people will get to your site:

• They search the internet using a search engine
• They click on a link to your site from another site
• They go directly to your site because they heard about it and know the specific URL (website address)
  

This can make it easier to generate publicity, build awareness and “drive traffic” on the site. It is also important, however, to register the site with leading search engines in your country.

Measuring the success of your website

It is good to be able to measure the number of visitors to your site. This information is useful because it can measure the effectiveness of the promotion for your website. Most website technology now includes this feature as standard, however, be sure to raise it with the person who is building the website, so you know how to find this information when you need it.

Some more advanced features of this technology include measuring which pages are visited most often, and which pages are downloaded most often.

Submission to search engines

Search engines are important because when people are diagnosed with a condition, they often first go to the internet to search for information on their disease. By registering your website, they will quickly and easily find your site when they put key words about their condition into their favourite search engine.

Most search engines work by scanning websites for key words using automated programmes called ‘spiders’. The information gleaned by spiders allows the search engine to create a list of ‘relevant’ sites in response to a user query. Some search engines now search for ‘themes’ rather than key words, to reduce the number of low-relevance search results. Even using these search engines, most searches will still produce a large number of ‘hits’ (results). If your site does not rank in the top ten results, or, at the very least, on the first page of results, it is likely to be missed.

There are specialist website optimisation services that work to increase the ranking of your site, so that when people search for ‘COPD patient information’, for example, your site will appear high up on the search results. These services can be costly; however they may be prepared to give free advice to charitable organisations on setting up a site. There are a number of internet sites, such as spider-food.net, that give advice on website search optimisation, but they tend to be quite technical and are more aimed at commercial sites.

Tips on submitting your site to search engines:

• Always include a list of key words. Choose keywords carefully. For example if you are creating a website for COPD, key words could be COPD, chronic obstructive pulmonary disease, respiratory disease, lung disease, emphysema, chronic bronchitis, patient information, patient organisation, support group)
• Automatic submissions are the easiest route – for example, www.dreamsubmit.net provides a free automated submission to around 40 major search engines.
• However, manual submissions are much more likely to be successful www.dreamsubmit.net also has listings for more than 1,000 search engines, including country- and region-specific and specialist health search engines.
• Submit your site more than once to the most important search engines to increase your chance of being registered – particularly if you have updated the site between submissions.

Generating links

Increasing the number of sites that link to your website not only increases the likelihood of patients finding your site by using a link; it can also improve the ranking that search engines give to your site.

Tips on generating links:

• Contact any websites that you have included in your listings by email and ask them to link to your site – this is known as ‘reciprocal linking’ and is considered good practice
• Identify and contact other sites that may be prepared to link to your site, such as:
  - General medical primary care sites for physicians
    (e.g. Doctor’s Guide)
  - Universities/medical schools
  - Specialist medical sites (e.g. respiratory physician  societies, International Primary Care Respiratory Group,   GOLD, European Association of Palliative Care)
  - General and health news sites
• Do a search (e.g. ‘<country> patient organisation listings’) to find websites that provide lists of links to patient sites and submit your details to sites for inclusion consideration
• For English-language sites, a listing on About.com provides some instant credibility
• Put information about your site in all press releases – news websites will often include links to patient information sites in features/news stories

Getting your site known

Publicising your website is often helpful in building awareness and encouraging people to visit the site. For more information on working with the press please visit Tools for working with the press.

Cost considerations

Developing and maintaining a website involves various initial and ongoing maintenance costs:

• Website designers – there are tools online to help you develop your own site in expensively, if you have the expertise available. Also, there are specialist health website design companies in many countries
• Writers/editors – unless you produce all the content yourself
• Registering the domain name
• Server/hosting (usually a monthly fee based on the size of your site)
• Development and upkeep (unless you do all of this yourself)
• Search engine optimization services (if used)
  

Fortunately, as a not-for-profit organisation, various avenues are open to you to help with providing resources and expertise.

Obtaining resources

Useful sources of funding and support (including technical expertise) for patient sites are:

• Government support
  Government departments often have funding schemes and grants available to set up patient information sites. They may also provide computer training for non-profit organisations
• Commercial companies
  Pharmaceutical companies and insurance companies have an interest in public health education. Some of these companies have corporate and social responsibility (CSR) programmes. CSR programmes are a planned effort by a company to have a positive effect on workers, their families, the local community and society
• Other charities
  Other charities that have already set up sites will often be prepared to give advice and support
• Universities or medical schools
  You could approach students to see if they can work on your site. Sometimes students can gain course credits by working with charities