Healthcare Digital self-help

People living with health issues or facing a challenging life situation often find understanding, support and an opportunity to exchange experiences with others on an equal footing in self-help groups. However, it is not always possible to find a suitable group locally or it may be difficult to attend in person. In cases like this, digital self-help offers an alternative.

Digital self-help allows people to interact via the internet, for example, by taking part in a video conference with a group. Just as in local self-help groups, the focus is on providing mutual support and exchanging personal experiences. As is the case with conventional self-help groups, digital self-help groups are not usually led by a professional. The knowledge and experiences shared are contributed by the participants themselves.

Typically, digital self-help takes the form of self-help groups that meet online on a regular basis. There are also self-help communities, for example, in the form of online forums.

Digital self-help offerings are, in principle, suitable for anyone who is open to having an exchange with peers on the internet. They are particularly useful for people with limited mobility or who have long distances to travel to attend a group in person. In addition, if you are unable to find a suitable support group locally, it can sometimes be easier to find one online. Digital self-help can be particularly useful for people with rare health conditions, for example, because the number of people affected is often so small that it is difficult to form support groups at a local level. 

People in employment, family carers and others who have little time for regular meetings can often find it easier to integrate digital self-help into their daily lives. In addition, some people want a greater degree of anonymity, which is easier to ensure online. In particular, younger people or those who feel at home in the digital space sometimes prefer online exchanges.

Digital self-help can take various forms – depending on how you want to interact with other people and what best suits your daily routine.

Digital self-help groups

Digital self-help typically takes the form of digital self-help groups. These small groups meet on a regular basis at fixed times, for example, using video conferencing. As in conventional self-help groups, the focus is on exchanging personal experiences within the safe space created by a supportive group. 

Digital self-help communities

Digital self-help communities usually consist of much bigger groups of individuals who interact online – for example, in forums, group chats or other social networks. In contrast to self-help groups, which have scheduled, “live” (synchronous) interactions, the interactions in larger communities are asynchronous. Posts can be written or read at any stage. Compared with self-help groups, anonymity is usually higher and personal connections with other members is usually lower in these communities.

Other types of digital self-help

Other forms of digital self-help are available in addition to groups and communities. These include, for example, apps that allow you to interact with other people in similar situations and podcasts where experts or peers talk about their experiences.

You can join a digital self-help group in just a few steps. First, you need to find a self-help group that meets your needs. Many groups are listed in online directories – for example, on the websites of self-help contact and information points or health insurance funds.
 
Once you find a suitable group, you normally make contact by sending an e-mail, submitting a contact form or sending a message to the group's contact person. This person is available for any questions you may have and will guide you through the process of joining the group. The contact person will explain how meetings are held, which topics are discussed and any technical requirements that may apply. They will usually also give you a brief explanation of the rules for maintaining confidentiality within the group.

You normally participate in the group by clicking on the invitation to join an online meeting via videoconferencing software. In some cases, a password is also required. All you need to join is a computer, tablet or smartphone with a camera, microphone and internet connection.

Digital self-help can make it much easier for people to access self-help. It allows people to exchange experiences with peers if there are no suitable groups in their area or if regular in-person attendance at local group meet-ups is not possible for health reasons or due to family or work commitments. For many people, digital options offer a particularly accessible way to become familiar with the self-help concept and get to know other people in the same situation.

At the same time, digital options bring their own challenges. Interacting with someone behind a screen may feel less personal. Technical issues may make it difficult to participate in a video conference, for example. There are also important questions to consider in relation to the protection of privacy. If you want to talk openly about sensitive topics, you need to trust that your personal data and information won’t be shared beyond the group. Therefore, it is important for the participants, organizers (contact persons), video service providers and community platform operators to all comply with data protection regulations.

Data protection plays a particularly important role in digital self-help groups because these often provide a space in which very personal topics are discussed. For this reason, you should be aware of the following considerations, among others, when searching for and participating in a digital self-help group:

• The offering should be reputable, for example, it should come from a recognized self-help organization or self-help contact and information point.
• The website or platform should have a clear data privacy policy and comply with the requirements of the General Data Protection Regulation (GDPR).
• Secure software that offers effective data protection should be used to host the meetings. End-to-end encryption should ideally be used for this purpose. In other words, only group participants can see or hear what is said or shown. Nobody else, with the exception of the software provider, has access.
• Access details for meetings should not be shared publicly and should only be sent to participants.
• You should only share personal data where absolutely necessary.
• A digital self-help group should have a defined set of rules – for example, taking screenshots is not permitted and no conversations are to be recorded. Anything discussed during the meetings must not be shared with third parties.
• Your own device (computer, tablet or smartphone) should also have a secure setup. This includes using a strong password and installing the latest software updates. Sensitive data should be treated in a responsible manner.

Considerations when using digital community platforms

In larger digital communities, such as forums or social networks, data protection is regulated differently. Some platforms, in particular specialist forums, comply with data protection requirements. In contrast, many social networks fail to meet these requirements. 
In principle, personal data such as your name, address or contact data should not be made public. Before sharing your personal experiences, it is also important to remember that any information made public on a forum or social network often remains visible for a long time.

If you’re looking for a suitable digital self-help group or community, various reliable points of contact are available online. Your own health insurance fund may also be able to help. 

An overview of existing digital self-help groups and communities is provided by the database of digital self-help groups and self-help communities operated by the National Contact and Information Point for Self-Help (NAKOS).