Closed ghost closed 1 year ago
GeorgiaHCA
commented
4 years ago Community sources: We had lots of comments from focus group attendees that they would like to see their own data. See the community recommendations folder
Allowing researchers to communicate is also important to ensure dynamic consent is possible
ghost
commented
4 years ago Dashboard Notifications has a number of functions and will show:
The community recommendations folder - focus group attendees - feedback as link above does provide the following reference to the community wanting to see their own data / also indicates concerns around data:
Focus Groups Summary of the 3 Groups related to User Concerns
Users would like to see their own data - ref General User / Caregiver / Moderation / Data Management / Concerns / GDPR Implications
5. Representing others
(a) General
• (R T d): “we want to make the data set as broad as possible and make the process as inclusive as possible, and certainly not exclude anyone because they have challenges, and on the other hand we take consent and agency really seriously, and we think everyone should have a right to express themselves in a way that they want - so these are the two sides of the coin.”
(b) Important to give everyone a voice
• (P d): “I feel quite strongly that we should be able to share a story, because…my son’s non-verbal, so his behaviour displays a lot of how he feels, and as his Mum I feel I understand him pretty well, and I would hate for people’s voices not to be heard because they can’t express it”
(h) Which groups or organisations should learn from the data? • (P d): shops • (A P d): schools • (A d): the NHS • (A d): GP surgeries, waiting areas, hospitals • (A P i): “for my son, in particular trying to go along to the doctors or a hospital appointment is an absolute nightmare” • (A P R A g): “NHS England, in their 10 year plan, have named autism and other disabilities one of 4 clinical priorities…I think there is an opportunity here to actually do something that does make a difference in GP services and hospitals, because at the moment politically, they’re listening”
• (A P d): architects and designers, airports, train stations, libraries
(c) Openness and Transparency
• (A A d): community trust: “I think from a community trust point of view, it’s really good to be transparent about why you want the data, but also why you don’t want the data” • (R T d): “one of the things that a lot of people thought that we might do with the data was sell it, and that’s definitely not what we’re planning to do with the data, but I think it is useful to be really explicit and upfront about the reasons and motivations, and limits of what we would do”
• (R T d): …I think it is unethical to collect really, really valuable datasets and not make them available for future use or potentially for reproducible aspects
• (R T d): having access to data is really important, and having access to the processes and to the things that have been done to that data or with that data are also really important
(i) How should we manage access to the data? • (R T d): a selection committee who could decide which researchers could access the data • (R T d): specific options for individuals to choose where their data goes
(g) Navigation First step (currently) is creating an Open Humans account:
• (R T d): “you do need to consent to Open Humans holding your data, but you can use your Facebook or Google accounts to connect to Open Humans • (A d): “This might be unique to me…I almost never take up the offer to connect users on Facebook, because I’m slightly concerned about big data, and linkages between different repositories”
(e) Concerns About Sharing Information • (A g): Concerns about commercial use: “[put] a ringfence around potential commercial uses, because this is intelligence which commercial interests might want to get their hands on” • (A i): “people might be wary of contributing, because they might think people just want to make money out of my vulnerabilities”
(d) Personal Choice • (T R, g): “…there’s also something really kind of fun and exciting about people being able to upload lots of experiences…whenever they want to, in whatever way they want to”
(b) Helping people more generally • (R T d): “giving people access and management over their own data and the purposes that it’s used for is one of the things that I’m very interested in” • (F d): “I [have] a real passion for responsible business in general, and making a difference to the communities that we serve” • (P g): “it’s empowering to people, to give them something that they do have to contribute”
(f) Creating connections/community *(R, T d): “I’m really excited about…people crossing over between the different groups that they may join the project in, as a member of the [developer] community and as an autistic person” • (R, T d): “building community and support within the autistic community” • (P g): “…sharing with the community…I think that would be particularly attractive”
Who should moderate?
• (A d): option to have multiple people look at a comment without necessarily communicating with each other (but you could see their decisions) - all of the different moderators put their response and then somebody else will collate all those responses (presumably majority sway) • (A d): “I think you’re gonna need a team of moderators especially if this becomes successful otherwise it’s going to get way too much for one person.”
• (A P d): give people specifics of what they could change for their comment to be included, for example if they are using swear words • (A d): have clear feedback which is “sensitive, non-judgemental, and constructive, saying how they would alter things
6. Data Management
(a) Agency • (R T d): “part of the point of the project is that people have agency” • (R T d): “the whole point of the Open Humans project…is to empower people to have control over their own data, and that is essentially what we’re doing here” (b) Changing consent • (R T d): For me…it’s very important for people to be able to change their mind
(c) Which Groups or Organisations Should Learn from the Data?
• (F d): the department of transport…”so they can adjust transport for London with regards to tailoring it and assisting people with autism” • (R T d): the way that we want to design the platform is that you can remove the consent. at any time, and that’s an important point • (R T d): more fine-grained consent checkbox, with more frequent recontact, also possible • (R T d): separate tick-boxes for sharing with research or publicly: “…what’s important here is that you can choose either, or both, so it depends on…the individual person who’s filling in this form – it depends what their motivation for sharing their experience is” • (R T d): “you can delete [your experiences] if you decide in the future you actually don’t want that to be there anymore” • (A d): What happens if you don’t click either option? • (R T d): you would be shown a series of your own experiences, and some researchers could see them, but they would not be made public or used for research • (A g): “…if you use it for research will you get contacted in any way?” • (R T d): “that is an open question – so can you tell us would you like to be contacted, or not be contacted?” • (A d): “I guess it depends on the kind of information that I’m sharing – if it’s not something that I really want to revisit again, then maybe not” • (R T d): consent for future purposes (don’t need to be re-contacted but can withdraw) an option • (R T d): the way that we want to design the platform is that you can remove the consent. at any time, and that’s an important point • (R T d): more fine-grained consent checkbox, with more frequent recontact, also possible
GDPR Implications
Allowing researchers to communicate is also important to ensure dynamic consent is possible
Email Communicator / link to Short Text Submission - comms and communicator app built into Dashboard as wireframe
As a: Designer, I would like to create for the community a wireframe design for the a Dashboard Template which will house a collection of features, whilst focusing on notifications - communications within the system and handle:
So that the community can provide feedback on the wireframe design, which can be taken into the prototype design stage on the project board as a concept to ensure the platform is being developed in the correct way
Acceptance Criteria: Review issue designs, research and wireframes take on board area as required. Define how this user story will close
Notes: Associated pull request: Sprint 5 MVP Structure (File Management Demo) Components to design - wireframe and then share with developers
Current Status: Considerations Design - Design Research Notes, Wireframe