Trusted Patients Communities
Description
I would like to connect to people that have my same condition ( symptoms or diagnosed disease), however I do not know where to find them or I do not trust existing communication platforms (e.g. mainstream social media). I want to be able to access a community of people with my same condition, but in a trusted way. Such a platform and access to such a network would allow me to develop a greater understanding about my situation, discuss my ideas giving me confidence to take them up with my doctors (comment: in an optimum case, doctors should trust them as well because its coming from this specific platform)I would prefer if this platform access is sanctioned/trusted by doctors and or a national patient association, for example as soon as I am diagnosed - the access is enabled by my doctor ( but not as a necessary gatekeeper, more like a coach/adviser service). Any exchanges of information in such a network should be confidential and not accessible for other purposes unless specifically consented.The challenge is to demonstrate how such a system could work, including for example access to the platform after an official medical diagnosis and or symptom spectra. Protection mechanism for platform users should be implemented (e.g. to avoid online trolling), as well as traceability of the contacts. Platform should be accessible and easy to use on both mobile and desktop devices, via all common browsers (or in an app). Preferably platform should support multiple languages and translation. and enable direct personal (spoken)communication between individuals, if both sites agree
Thematic Area
3-Sharing with Patient Community
Patient Champion
Team Composition would benefit from
Web/Mobile App developer, bot/chat developer, UX Expert, Patient interaction design, Social media dev. Certification/security (block chain?)
References/Resources
example : https://www.patientslikeme.com/https://www.sciencedirect.com/science/article/pii/S2210832717300753
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3. Sharing within patient communities
This topic is all about information and support. After an important meeting with the doctor, patients are frequently left with a diagnosis while being unable to remember anything else. What follows is a moment of shock and a feeling of loneliness and frustration. Uncertain where to look for information and support, they often find themselves on the internet with contradictory information or unreliable sources. In sum, patients would like to have an easily discoverable and accessible platform, where they can: •Find more experienced patients with the same diagnosis, •Find reliable and trustworthy information written in understandable language, •Tell stories, share feelings and receive support in decision making processes and everyday issues.
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