Loneliness is becoming a problem in times of digitalization. This situation is currently exacerbated by the lack of physical contact caused by the SARS-CoV-2 virus. Chronically ill people and risk groups in particular have an urgent need for exchange with other victims in the form of self-help groups. Our platform for the exchange with like-minded people offers a protected space and a digital contact point for sick people and their relatives. Within the community, like-minded people can speak openly about the same topics and help each other to deal with the disease and give tips.
What it does
During a pandemic, how can chronically ill and at-risk persons
- get to know each other and exchange information, and 2. continue to participate in and operate self-help groups? Our solution approach is a platform that can be adapted to the specific needs of self-help associations. The modular approach allows self-help communities to configure the platform quickly and easily. Affected persons and their relatives can exchange views on disease topics, network and organize events. Thus the important exchange and mutual support can continue without physical contact even in times of a pandemic.
How we built it
In 2018, we have realized a similar platform for MS patients based on Drupal 7. This platform offers a community for exchange in the form of a forum, the possibility of networking with each other and the organisation of events. New features are to be developed through the modular system, so that the platform can be easily configured to meet individual needs. The new features include a controlled disclosure of the members' identity, a filter function according to health and medical criteria and different anonymity levels for members.
Challenges we ran into
Associations often don't see possibilities to get financial support to add this into their digital portfolio. What we try is to find a solution which can be used by the groups and associations by low financial commitment after successful realisation of the platform foundation.
Accomplishments that we're proud of
How the workflow was with the previous team to create individual solutions for the different target members of the platform. And how big the ambition is to let this project grow to a bigger solution for individual groups and associations.
What's next for Digital platform for risk groups and chronically ill people
There are already various platforms for some diseases (e.g. multiple sclerosis). These platforms are operated by pharmaceutical companies for economic interests (marketing purposes, collection of personal data, etc.). Our solution is to be made available to independent associations, so that those affected are provided with security, privacy and the possibility of anonymity.
Our platform is to be made available to various independent self-help associations for their members (chronically ill and persons at risk). Associations for allergy sufferers and asthma, Alzheimer's, autism, depression, glycogenosis, cancer, children with heart disease, kidney disease or rheumatism are interesting. For many of these associations an independent development is financially not feasible. With our modular approach the individual needs (medical specifics, profile settings, anonymity levels, authentication procedures) can be easily adapted and the financial effort can be kept low. The associations should be addressed specifically.
For the prototype, the new features listed below will be developed and integrated into the modular system. From our experience, the following features are essential and have to be developed:
- Step by step, controlled disclosure of the identity of the members among each other
- Member and group search not only according to socio-demographic or general, but also according to precise health and medical criteria
- Different anonymity levels and control options for groups
- Authentication by associations (for association members via their own database, for others via post code procedures)