2006 05 25 Internet Do's and Dont's 1.31

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. 3 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.

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