Patient Support Websites: Do's and Dont's

Development Guideline to set up a website for patient support groups

Table of Contents 1 The challenge setting up patient support web sites ...... 2 2 The Do's and Dont's...... 2 2.1 Set and state goals of your website...... 2 2.2 Set general design before starting implementation...... 3 2.3 Follow established design guidelines of the web ...... 5 2.4 Provide Disclaimers...... 8 2.5 Provide and moderate discussion forums...... 8 2.6 Provide a print function ...... 9 2.7 Provide a search function ...... 9 3 How to set up an affordable patient support site easily ...... 9 3.1 PostNuke...... 10 3.2 Typo3 ...... 11 3.3 Joomla (Mambo) ...... 12 3.4 Other systems...... 12 4 Resources ...... 12 5 Acknowledgements & Contact Details ...... 13

Author: Jan Geissler, [email protected] European Cancer Patient Coalition (ECPC) Leukämie-Online e.V.

Version 1.3, 25.05.2006

1 1 The challenge setting up patient support web sites

Within the last few years, the internet has developed towards one of the most important mass media Information and communication on healthcare issues are, and have always been, a key topic on the web, connecting patients, healthcare providers, doctors and the industry. As the costs for providing information on the web have basically reduced close to zero, not only well-funded companies and institutions have been able to provide information on the web, but also small patient organisations and even individuals affected by a cancer diseases. Patients have been empowered not only to get well-informed, but also to present themselves on the web, distribute knowledge and share personal and medical information with others - or simply, "get connected".

With the uprise of the free software movement ("Open Source Software") and near-to-insignificant web hosting costs, setting up and running a website can come down to zero investment and operating costs of just 10 Euros per month. What matters more is – how do patients find my website? How do I structure content that they get along well with it? My website http://www.leukaemie-online.de is just one of the living examples where free portal software was used and customized to set up a very vital community of cancer patients – and I can run it with virtually no budget.

However, most of the patient support group carers are far from being technology experts, and at some point in time they will be confronted with offering an easy-to-use and at the same time affordable web site to their members. Patient organisations tend not to have enough resources to contract a design agency and web development agency to develop an individual web site - and even if they have, they might have no resources to maintain it - or even extend it with new functions. Many organisations manage to raise enough non-restricted funding for the set-up, but struggle to finance new functionalities - and that's why they tend not to grow with demand. The rationale of this guide is basically to share some basic knowledge and practical experience about the do's and don'ts in designing and setting up a patient support group website. Additionally, it will provide some hints how not to get in dependency of an individually developed web site solution which thereafter fails to be maintained without significant funds. -- Jan Geissler, [email protected], in May 2005

2 The Do's and Dont's

2.1 Set and state goals of your website

Setting up a website requires to clearly defining what is to be achieved - before implementation starts and before technology has been chosen. When scanning patient support web sites, I have often come across sites which have not been designed well for their audience, and which had features implemented which nobody used. Deserted discussion forums, neglected web sites with outdated information and missing community functions are often the outcome of not setting clear goals and analyzing what the organisation wants to offer as well as what it is able to maintain and update on a long-term perspective.

2 Therefore, before doing anything, clearly articulate the primary goals of the web site before beginning the design process. Identify the goals of the site determining the audience, content, function, and the site's unique look and feel.

Defining your website's goals include: 1. Define overall objective of the site and its sections: Do you want to educate, inform, entertain, stimulate creativity, etc. 2. Define your audience: Are you providing your site just for patients or also for other groups, e.g. healthcare professionals. If more than one group addressed, consider to set up different sections of the web site, as some information which is relevant for patients might keep professionals away. 3. Define content: Depending on your objective, do you want to provide information (information pages, e.g. static information, news, medical texts) or stimulate communication (community services, e.g. chat and forum)? Be sure that you can maintain and update the static content you want to offer in the long-term, as cancer treatment develops quickly, so any static information which is outdated might cause confusion. Just offer the depth of information which your organisation can really handle. 4. Define services, e.g. chats and forums, which are relevant to your audience. Clearly prioritize between "must have" and "nice to have", as implementing everything might exceed budget and time constraints. In which sections will both information and communication be relevant, e.g. where visitors are willing to comment on news articles, or people discussing in forums? 5. Define level of importance: Which content and functions are most relevant for your audience? Establish a high-to-low level of importance for each content category and carry this approach throughout the design. Important categories should appear higher on the page so users can locate them quickly. 6. Define user performance and user preference goals: Define for example which information of the site should be found 80% of the time and in less than one minute, and which information can be set on a lower attendance level. This helps to build better web sites and will make usability testing more effective.

2.2 Set general design before starting implementation

1. Use an iterative, or repeated, design approach to create the most useful and usable web site by developing and testing prototypes of the web site. These iterative designs can be done on papers and not necessarily in software to keep efforts down. Test yours scribbles with somebody not involved in the projects, and then reiterate. The "test and make changes" process should be repeated until the web site meets your usability goals.

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Source: NCI Usability Guidelines, http://usability.gov/guidelines/designprocess.html Do not reinvent the wheel and do try to understand common usability principles in the web. Over the years, web users have got used to a certain way of using the internet. Users, particularly older users, tend to learn and remember locations of information, functions, and controls. Keep in mind that users spend most of their time on other sites, which is where they form their expectations for how the web works - and how they would expect your site to work. Methods to measure web site usability include eye tracking, but running those tests can be very expensive. Institutions like the Software Usability Research Laboratory of the US-based Wichita State University have evaluated where users would expect typical website elements like logo, internal navigation, external links, website search or promotional information. They split an empty browser window in 56 sections and asked their interviewees where they would have expected which information. You can see the result in the following illustration which represents the layout of most popular sites on the web:

Source: c't 03/2002, "Petra Vogt: Dem Surfer auf der Spur" Be consistent in your design. Present information and similar functions consistently throughout the site , including a consistent position for logos, page titles, headers, navigation elements, buttons and graphics. The more consistent a web site is in its design, the easier it will be for users to quickly find the right information.

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Source: NCI Usability Guidelines, http://usability.gov/guidelines/designconsid.html

2.3 Follow established design guidelines of the web

Even at the times of fast internet lines, most people, especially the elderly, still access the web on older computers via a modem. Please have this in mind when designing your site: Do not base your site on a certain display resolution and small font sizes. This is still a big flaw on many sites on the net. Think of the visual impaired users which might have increased the text size in their browser to be even able to read the content. There are also many users with old computers on the net as well. Don't create barriers for access to information where it's not necessary. Additionally, for those with big screens, fill the available design space and do not leave white space on the left or right.

Small fonts may prove unreadable for many elderly users and decrease reading speed. Source: NCI Guidelines, http://usability.gov/guidelines/fonts.html

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Fixed widths of sites will neither be readable on small screens nor make use of large screens. Source: NCI Guidelines, http://usability.gov/guidelines/softhard.html

Avoid animations, e.g. using technologies like Flash and Shockwave. They may look nice, but unless the animation is not really necessary to illustrate e.g. a medical issue, it will bother your visitors by increasing loading time, distracting him from reading, decreasing the speed of the computer, and even render the site unusable - as the browser of your user might not be able to play those animations. For some users with cognitive disabilities, any movement can cause such a distraction that the rest of the page becomes unreadable. Also avoid introductory splash screens ("you will be forwarded in 10 seconds, click here to continue"). They might make people more aware of your organisation's "brand", but will annoy people the more often they come back to your site. Bring them to your homepage and to the content right away. Keep the web page size small for an acceptable downloading time. The maximum allowable page size is 30,000 bytes (30 kilobytes, including text, graphics) in order to achieve a response time of 10 seconds using a modem. Page sizes above that size may increase users' wait time. Depending on their connection, users may not wait for the page to load. If loading takes more than 15 seconds, research has shown most of them lose interest. Put a descriptive and different title on each page and section, as titles are used by search engines to identify pages when users search. Pages without descriptive headings and page titles will not be found on the web. Additionally, page titles are used when users put their page in their bookmarks/favourites. Use many, carefully selected headings, with names that conceptually relate to the information.

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Put descriptive titles in every section Source: NCI Usability Guidelines, http://usability.gov/guidelines/

Visualize links other websites clearly. Even if your design agency might find underlined textual links less appealing, use underlined text for all links when possible. Requiring the users to move the mouse around in the text to see when the mouse pointer changes to a hand is like mine sweeping. Many links are missed by users because the links are not evident. Research has shown that when users were given visual cues to locate links, as opposed to using the pointer to search for links, they were able to find the information seven times faster. For a graphical link, the term "click here" has been shown to increase recognition that the graphic is a link. But if possible, always use text links and not image links, as they load faster and are readable also with specific browsers for visually impaired.

Source: NCI Guidelines, http://usability.gov/guidelines/links.htm l Use navigation aids to ensure that users can use the web site navigation effectively and they know where they are. Navigation aids such as offering an indented vertical navigation or showing a "path" gives the user a visualization of the position of the current document on the web site and helps him to effectively navigate through the site.

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Do not communicate a message with colour and moving text. Ensure that text and graphics are understandable when viewed without colour. Otherwise, colour-blind users and users with devices that have non-colour or non-visual displays cannot receive the information. When foreground and background colours are close to the same hue, they may provide insufficient contrast on monochrome displays and for people with certain types of colour deficits. Allow users to control time-sensitive content changes, so they can pause or stop moving, blinking, scrolling, or auto-updating of objects or pages. Additionally, do not use moving text (e.g. tickers), as users with disabilities may not be able to read quickly or accurately enough to interact with moving text or objects.

2.4 Provide Disclaimers

Be aware of the legal issues in your country. Most countries have strongly regulated what is to be published, no matter if it is a book or a web site. Be sure to provide all information necessary, e.g. your organisation's postal address, contact details, and make sure someone answers if an email is received. Patient web sites tend to be less strict in copyright issues, but if someone feels offended, answering an email quickly can sometimes avoid legal confrontation.

Think about providing a disclaimer for discussion forums, and stating your privacy policy for those visitors wanting to stay anonymous. Be sure to state that your organisation excludes any liability for links to third party websites which your website might offer, as this is absolutely necessary in many European countries.

2.5 Provide and moderate discussion forums

It is seen as a central advantage of online patient communities to the cancer topic that persons affected with a disease are offered an easy possibility of making contact with many different persons in a similar situation. This should be promoted by patient support groups as far as possible, e.g. by providing a discussion forum.

As a central disadvantage of online communication is anonymity and the low inhibition threshold to make strong remarks. A strong dispute can confront your members and render your forum obsolete. You should therefore take concrete measures to save the quality in your discussion forum:

· Name a community manager to avoid wrong, misleading, hostile or even unlawful remarks by moderating the forum. A Community manager should check the forum regularly and remove corresponding entries. Also entries which include advertising should be deleted immediately.

8 · Consider to require registration for posting remarks in the forum. With compulsory registration, negative remarks and unfriendly discussions decrease considerably since the anonymity of the participants is lifted. However, there is the danger that the members feel restricted too much by a permanently intervening of the Community manager, or regard anonymity in forums as essential since e.g. they don't want to be associated with a cancer illness in their professional life.

· Take measures against members who publish consciously wrong, misleading or hostile remarks, e.g. exclusion from the online community.

· Additionally, patient forums are usually less frequented than other web communities. It can be helpful to introduce e-mail notification if someone replies in a forum - so forum members are prompted when someone answers to their question. However, this requires member registration or the provision of email addresses as well. Additionally, email notifications for the community manager can help him to visit the website only when new entries in the forum occur.

2.6 Provide a print function

Many users prefer to read text from a paper copy of a document, also to make notes or archive helpful content. However, web sites are mostly designed horizontally while paper formats are vertical, so often print-outs miss half of the text in the center, as most users don't know how to change orientation of the print-out. Therefore, provide an alternate form of all documents, resources, or files that can be printed in their entirety, without navigational elements of the site.

2.7 Provide a search function

How often do you remember you had read something important on a web site and cannot reproduce where you found it? Hence, carefully consider to including a search engine on your website. Patient websites tend to offer a lot of information which is often overlapping and by the time the amount of content keeps growing. However, search functions often take longer to design, develop, and maintain, and require a very consistent technical design of your web site and the content.

3 How to set up an affordable patient support site easily

Setting up a patient support web site can require minimal to no funds, provided that freely available standard technology is used. There are millions of compassionate software developers world-wide to develop software in their free time and to provide it for free to the web community. This software

9 often matches - or is even superior to - commercial software, despite the attempts of many commercial software companies claiming the opposite. The term "open source software" doesn't just mean giving access to the "programmed" code, but is basically a kind of philosophy in software development. The distribution terms of open source software complies that the software can be freely distributed without any license costs, and everyone else in the world will benefit for free from any improvement or extension that is being developed somewhere else. There are many analogies between the patient networks and the open source community. What is Open Source Software? The open source software license shall not restrict any party from selling or giving away the software as a component of an aggregate software distribution containing programs from several different sources. The license shall not require a royalty or other fee for such sale, that derived works (e.g. updates) must be distributed under the same terms as the license of the original software (meaning, has to be free as well) as well as the software must not discriminate other persons or groups.

This sounds rather complicated, but can basically be summarized in: This software is free - and will be free, even if updated and bug-fixed. And you can share all extensions and developments with anyone else, e.g. other patient groups.

Many commercial companies - including web development agencies - tend to sell mostly commercial solutions as this ensures their future business with their customer - in maintaining and extending the web site or in subsequently selling updated licenses. This is contradictory to the intention of a non-for-profit organisation which has very limited funding.

Hence, envisioning the budget constraints of patient support groups, we strongly recommend evaluating whether open source solutions for providing web site portals or communities would suit the needs of a patient organisation.

There are many very potent open software solutions for providing online web sites and online communities. Like stated in the introduction of this guide, http://www.leukaemie-online.de is just one example of many which has been based on such a solution called "PostNuke", and it featured not only news and static information, but also modules like forums, glossaries, email newsletter, event calendar, FAQs, book reviews, download sections - right away from the installation. For an experienced person, the basic framework of the system is installed on a server within a maximum of one hour - and can then be readily customized and filled just with the use of a web browser and minimal learning time. And it is based on base-level technologies (for those who are technically interested: PHP, mySQL, HTML) which are available on servers at a monthly rate of around 10 EUR.

There are numerous examples of open source systems, so I can just state a few which you can mention to your IT expert:

3.1 PostNuke

As mentioned, the open source portal system "PostNuke" features community and content and collaboration modules, e.g. forums, glossaries, email newsletter, event calendar, FAQs, book reviews, download sections, member registration, private messaging – with many more free modules developed by a community of hundreds of software developers. It is very easy to install, understand, use and administer, it is available in almost every language, and it is free of charge.

10 However, it is limited in terms of screen design – the look and feel can be changed, but not the general screen layout. Official website: http://www.postnuke.com

Requirements: Your servers need to run only PHP and mySQL and a web server (like Apache). Most of the low-cost web hosters can do that as all this is free software. Examples for health-related websites based on Postnuke: http://www.leukaemie-online.de (in German language) http://www.cmlwatch.org http://www.basecamp.org http://www.tracheotomy.info http://www.fitandwell.com http://www.maledepression.com

http://www.leukaemie-online.de

3.2 Typo3

Typo3 is a very sophisticated web content management framework which can help to develop web sites which contain mainly static information, but is less on the communication/community side. This software - which is developed and extended by a large community of developers - can take up with many other commercial systems and allows a tremendous flexibility in defining layout and design. However, it is also requires expert knowledge to set up the initial site. Therefore, there are also professional agencies which can help to set up and maintain a Typo3-based site, but you will still benefit from free updates and free modules. Official web site of the project: http://www.typo3.org

Commercial web site of the project, e.g. for getting professional support: http://typo3.com

Requirements: Your servers need to run only PHP and mySQL and a web server (like Apache). For full functionality, extensions like ImageMagick, GD/FreeType and zlib (which are all free software) should be installed on the server - this is not the case for most €10/month hosters.

11 Examples for health-related websites based on Typo3: http://www.uicc.org (International Union Against Cancer) http://www.auslandshilfe.de http://www.internetspende.org http://www.oeaw.ac.at

3.3 Joomla (Mambo)

Joomla! (http://www.joomla.org) is a very powerful free Content Management Systems and is, like Typo3, supporting easy implementation of everything from simple static websites to complex portals. Joomla is easy to install, simple to manage, and reliable. It is less complicated to install than Typo3 and easier to manage, and features a variety of additional modules (e.g. discussion forums, address books, etc), layouts/skins, and is supported by a large development community. Joomla has been set up by the same team that originally developed the Mambo Content Management System (http://www.mamboserver.com). Joomla was based on Mambo's final stable release 4.5.2.3 and was split from Mambo to secure moving this project forward in the true spirit of open source. Additionally, several small features that were going to be released in Joomla! 1.1 have been brought forward and included already in release 1.0. Joomla also offers a sub-forum which provides a space for all those working in the non-profit, charity, and public sectors to discuss their usage of Joomla. The goal of this sub-forum is to aid the Joomla Core Team in understanding the CMS needs of the non-profit community, and for the non- profit users community to learn more from each other. In addition, this will operate as the working space for advocacy information for the community, i.e. upcoming non-profit conferences, posting of non-profit sites using Joomla, etc., see Joomla Forum "Non-Profit Organizations and Joomla" Joomla! is one of the most powerful Open Source Content Management Systems on the planet. It is used all over the world for everything from simple websites to complex corporate applications.

Requirements: Your servers need to run only PHP and mySQL and a web server (like Apache). Most of the low-cost web hosters can do that as all this is free software. Examples for health-related websites based on Joomla: http://www.mepsagainstcancer.org (developed by Jan, ECPC)

3.4 Other systems

There is about two dozens more sophisticated Open Source Content-Management/Portal systems which I have not reviewed. Please check out http://www.opensourcecms.com for a list of very powerful open source software packages.

4 Resources

This paper has used the following helpful resources: · National Cancer Institute's Research-based Web Design & Usability Guidelines for communication of cancer research, on which most of this guide is based: http://usability.gov/guidelines/

12 · Jakob Nielsen's Usability website useit.com, especially the article "Medical Usability: How to Kill Patients Through Bad Design": http://www.useit.com/alertbox/20050411.html

· UsableNet provides a free service to test your website briefly very technically on usability: http://www.usablenet.com/

· Online Guide to Usability which features quite interesting articles about Design, Writing, Information Architecture, Quality Assurance, Design Link and Bibliography: http://www.usabilityfirst.com/websites/index.txl

· "Dem Surfer auf der Spur, Untersuchungen zur Benutzerfreundlichkeit von Websites", Petra Vogt, c't 14/2002, S.180 (German)

5 Acknowledgements & Contact Details

We would like to thank everyone committed to open source software. Without all those compassionate developers in the open source community, neither my website nor many other health-related patient activities would have been possible. For more information on open source software, see http://www.opensource.org

5.1.1.1 About the Author

This guide was written by Jan Geissler, [email protected]. Jan ist founder and director of Leukämie-Online.de (http://www.leukaemie-online.de). At the time of his leukemia diagnosis at the age of 28, hardly any information on new experimental drugs was available in German language at that time, so he had to inform himself on English websites. Being an IT professional for many years, he started to translate many of English articles and publications into German and published them online on his patient support website Leukämie-Online.de which was newly set-up using the open source portal software PostNuke. His online community – which is now registered as a charitable organisation in Germany – just recently celebrated its fourth anniversary, being one of the most frequented leukemia websites in German speaking countries today.

Jan is also founding member and vice president of the European Cancer Patient Coalition (ECPC, http://www.ecpc-online.org) which was established in 2004 to represent the views of cancer patient organisations in the European healthcare debate and to provide a forum for European patients to exchange information. The focus of Jan's work in the steering group was to get more than 170 ECPC member organisations all across Europe connected via the internet, as well as giving ECPC a voice to make information about clinical trials publicly available to patients.

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5.1.1.2 Contact details European Cancer Patient Coalition (ECPC)

Website: http://www.ecpc-online.org/

E-Mail: [email protected]

Leukämie-Online e.V.

Website: http://www.leukaemie-online.de/

E-Mail: [email protected]

Document Revision History

1.0 13.06.2005 Jan Geissler Initial draft 1.1 13.06.2005 Jan Geisser First release for "New Horizons" Conference 1.2 23.10.2005 Jan Geissler Updated Joomla/Mambo 1.3 25.05.2006 Jan Geissler Updated Joomla section, reformatted, typos removed

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