The internet has developed towards one of the most important communication tools in healthcare. Healthcare has always been a key topic on the web, connecting patients, doctors, regulators 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, share personal and medical information with others, and build global coalitions -- or simply, "get connected".

With the uprise of free, open software ("Open Source Software") and near-to-insignificant costs for setting up and maintaining a website, having a web presence can come down to very little investment and operating costs of just 10-30 Euros per month. What matters more is: how do I avoid I am starting something I cannot maintain later? How do I set it up? How do I structure content that visitors find what they are looking for? How do patients find their way to my website?

Jan Geissler, Director ECPC and founder of Leukaemie Online, has developed a number of websites based on free software during his work in cancer patient advocacy. The websites of ECPC (http://www.ecpc-online.org), Leukämie-Online (http://www.leukaemie-online.de) and the global CML Advocates Network (http://www.cmladvocates.net) and are just some of the examples where free software was used and customized to set up a lively communities of cancer patients -- and all of them are run with very little budget.

However, most patient advocates 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 are in the risk of being locked into contracts with  design agencies or web development agencies which might provide a good deal for setting it up, but there are many examples where this resulted in a commercial dependency and heavy follow-on costs. The patient groups might not have enough resources to maintain the website, keep it secure because it would require costly upgrades, or to extend it with new functionality. Many organisations manage to raise enough non-restricted funding for the set-up, but struggle to finance extensions or even updating its current content -- and that's why patient websites often become a neglected online presence.

The rationale behind our guide is basically to share some basic knowledge and practical experience about the do's and don'ts in designing and setting up patient support group websites. Additionally, it will provide some ideas how not to get in dependency of a commercial software solution, which thereafter struggles to be maintained in the lack of sufficient funds.

Guide for Building Websites for Patient Organisations: Do's and Dont's

Leveraging the experience of having developed a number of cancer-specific websites with little efforts like mepsagainstcancer.org, ecpc-online.org, cmladvocates.net, leukaemie-online.de, ECPC has developed a toolbox/guide for setting up a patient support group web site.

Download here: Guide Building Websites for Patient Organisations: Do's and Dont's (Development Guideline to set up a website for patient support groups).

Other helpful information

WordPress, Joomla, Drupal, and Plone are all free and open source systems that can help nonprofit build and manage websites. But how do they compare? Idealware has published a free  60-page report that provides both an introduction to the topic and a very detailed comparison of the four systems. The report also includes a directory of companies who help nonprofit create websites and implement these Content Management Systems. The report can be downloaded here.

If you need further information feel free to contact the author Jan at This e-mail address is being protected from spambots. You need JavaScript enabled to view it .