Table 4 Hints for the development of websites with patients’ experiences

1. Ensure and guarantee neutrality and independence: if possible, avoid an industrial or private company funding. If there is such a funding, guarantee that the sponsor(s) do not have an influence with regard to content. In this case, multi-sponsorship is also recommended.

2. Ensure and guarantee neutrality of the Internet server provider hosting your website: users will expect not to be tracked und connected with third parties.

3. Chose for the right equipment and check your technical devices for the interviews: good video and audio quality are important for the acceptability and a convenient use of the website’s content. Use common formats for interoperability.

4. Try to be exhaustive in your topics and balance the views: ensure that relevant dimensions of your topic are not missing by developing a theoretical sampling strategy in the very beginning. Include the views of patients in the development of topics. Take care that negative and positive experiences on one topic are not drifting in one direction only.

5. Avoid comments or interjections while the interview partner is speaking: interviewer’s expressions like “oh”, “wow” and “m-hm” will be perceived as distracting later in the video or audio. Endure to say nothing in that situation and instead nod silently.

6. Be nice and fair with your interview partners: get their agreement and do not use interview sequences, which are compromising them.

7. Keep authenticity: your interview partners may express views, which are contradicting with your professional knowledge. There is a justifiable reason why and how the persons came to these views and attitudes. These should be represented on the website. Obviously false or misleading information can be cut out in the videos and audios or commented in an amendment.

8. Detailed planning and documentation of decided actions is the key to a successful collaboration: when cooperating with team members on the website, precise agreement, and documentation, e.g., how the videos and audios are to be edited, is particularly important to achieve a certain consistency regarding the design.

9. Develop a reasonable website structure and navigation: make it easy for the users to find quickly the information they find relevant. Implement search and filter functions.

10. Help the users to find further information on evidence-based knowledge and possibilities for help and support: provide information about the disease and the indications or implement relevant links to other related websites, e.g., patient organizations. Think about creating online-forums, chat rooms and/or personal exchanges between users or provide a link to other websites with such possibilities.