What is opencare ?
opencare is not a source of instruction for care, or substitute to education, and medical and legal advice
opencare is a research project funded under the action “Collective Awareness Platforms for Sustainability and Social Innovation” (CAPS) of the European Commission Horizon 2020 framework programme.
opencare is a social innovation project at heart. It brings a diverse community together to rethink care provision: citizens, activists, makers, experts on health care, social care, service design, digital fabrication, collective intelligence and public policy evaluation.
Most of the conversation aroune ched care in the project will happen online under the opencare challenges pages - we expect it the participation to be large, diverse, and rich.
The conversation related to opencare is hosted on the edgeryders website.
opencare and your data
Some of opencare activities will be to develop a software stack to monitor and assist collective intelligence social dynamics in online communities. We indeed employ software to help the community discuss, design, test and evaluate care provision services.
To do so, we analyse the content of the conversations through softwares which help bringing participants together by identifying points of consensus and controversy, summarizing and structuring arguments.
For the means of the opencare research project, Edgeryders shares via secured and encrypted means access to research data, marked up for ethnographic study, after pseudonymization.
##Get to know what we do with the data,read our Data Management Plan!
Q&A : about participating to the opencare project
Could I start a conversation about my last experience with the National Health Service?
This platform is explicitly meant to host and facilitate conversations on topics akin to this. While you are of course free to avoid engaging in this kind of discourse, we encourage you to reflect on the purpose of your joining this community.
Can I look for contacts sharing experiences about a procedure I may undergo in the next future?
One of the goals of this platform and its community is to nurture a network of people whose experiences can inform others’ way of dealing with events / issues, or to detail unsolved needs for volunteers who might commit some time to help.
Can I accept to connect to a user outside of the platform to continue the conversation away?
Whilst we do our best to ensure that everyone here is authentic, please bear in mind that everyone else followed just the same procedure as you to access this community, and we have no seal of guarantee. Keeping your conversation on the platform, while offering us the possibility to work on your data, also helps all of you playing your conversation of safe ground.
How is sharing my data here different from sharing them on a commercial social platform (e.g.: Facebook, Instagram …)?
opencare will not sell, or disclose your data to third parties. All the information contained on this platform is only accessible to registered users, and to the consortium members http://edgeryders.eu/en/opencare/partners. These are committed to analyse the data on this platform solely with the purpose of studying how community dynamics influence cooperation.
“Other social platform gain from advertising, surely you will profile me to match me with some offers”
While matchmaking for solutions would be a very cool feature, we are not there yet. Any data shared will be used to study the conversation around care, and won’t be repurposed for profiling or anything like that. Any new use intended for data on the platform will be rolled out only after updating all the users about the change of scope.
“All these platforms could conduct small social experiments by modulating exposure to information of certain groups”
As in the famous 2014 Facebook experiment :
http://www.theguardian.com/technology/2014/jun/29/facebook-users-emotions-news-feeds opencare may steer some conversation to explore the impact of certain information, or the reaction of public to certain scenarios. However, UNLIKE Facebook, opencare will be supervised by an ethical advisory and will undergo ethical review, and will be very transparent later about the scopes and results of its experience
Is opencare offering health care or social care advice?
No - opencare is a platform for users to freely share their experiences with health- and social- care, or their ideas to solve related problems. It is by no means a substitution for your doctor, nurse, or social worker… although we would love if they could join us too ;)
Can you modify or delete your data once you have started using this platform?
It is important that you know: yes, you have a right to delete your profile in full, by contacting this person (Ms. Noemi Salantiu, email@example.com), who will be responsible of removing your profile data and conversation from the servers, and from the datasets shared with the research groups. Should you want a copy of these data, make your request clear, or they may be lost forever.
What does contributing to a conversation on opencare imply?
- I share my opinion with a closed community of experts
No - While there will be “experts” starting/joining conversations at times, and definitely we hope “experts” to take note of the shared information and opinions available on the platform, by contributing to an OpenCare conversation you are really publishing your thoughts, making them available to read for everyone interested in the topic.
- I am sure that no ill-intending person/entity will ever discover what I shared
No - In opencare publishing is intended in its fundamental meaning, and anyone can read everything, unless specifically stated at the beginning of a thread. We believe the community has a competitive advantage in joining the conversation, which is that of creating meaning, over any exploitative attempt at just reading/analysing the conversations. However, as it is for culture, nobody will play gatekeeper with what is published in opencare
- I will be involved in interesting new initiatives
It is not possible to promise that this will happen, but there is good reasons based on past experiences that participating actively in conversations that are “close to home” can lead to spinning off interesting initiatives. The opencare consortium hopes to see this happening, and is there to advice and support when this is sought by the community
Whose responsibility is it if I try something read on opencare and fail?
Yours - While this platform invites you to share and discuss problems and workarounds to health and social care needs, its moderation is not indeed to judge the validity of the exchanged informations. We invite you to complete-and-compare any information sourced from opencare with external authoritative sources (e.g.: GP, consultant, nurse …). Should the nature of the suggestion be extremely novel, please do raise a flag of uncertainty inviting the attention of one of our consortium members to try and assist you, if possible.
Does opencare need my health data, or information about my beliefs?
No - OpenCare does not need any specific “data”, the analyses will focus on conversations and their networks. We invite you to avoid disclosing health data or other sensitive/personal data when not strictly needed, and to use analogies or other means to describe the information you want to share. Should you still want to share them, be reminded that any registered user may read them?
Does opencare have my consent to analyse my data? How can I be more informed about the scopes of your research?
opencare will study the conversation on health and social care, and whether this can inform new bottom up workarounds to scale, with ethnographic methods.
If you want to know more, we have openaccess-ed our full proposal, or you can just participate to one of our hangouts before deciding to give your consent and join in !
##Pick a challenge and share your story on Edgeryders!
Legal information on data protection and privacy
Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and on the free movement of such data, and repealing Directive 95/46/EC (General Data Protection Regulation) (Text with EEA relevance)
Directive 95/46/EC of the European Parliament and of the Council of 24 October 1995 on the protection of individuals with regard to the processing of personal data and on the free movement of such data
Handbook on European Data Protection directive
European Commission website - Protection of personal data
This project has received funding from the European Union’s Horizon 2020 research and innovation programme under grant agreement No 688670